ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Derek on June 19, 2007, 03:37:20 am
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Hi all...
Just thought it might be useful to learn what activities or regimes we tend to engage in to hopefully assist in prolonging our precious 'watch and wait' status!
I will start the ball rolling with my 'Top Ten Tips' albeit this is my personal routine and is in no way intended to have any scientific basis with regard to treatment of the AN condition...
1. Annual MRI scan & neuro consultation (regular monitoring is essential..look upon it as part of your routine such as a visit to the dentist or optician)
2. Sensible balanced diet with plenty fresh fruit, veg and oily fish (good for all aspects of keeping healthy)
3. Drink at least 2 litres of water each day (essential part of maintaining good health)
4. Brisk 4 miles daily walk over varied terrain (assists in maintaining good balance)
5. Daily cycling / motor cycling (assists with balance and coordination)
6. No smoking (a MUST for assisting with overall good health)
7. Alcohol in moderation (within acceptible approved guidelines)
8. Complete rest of 10 - 20 minutes during the day with eyes closed and feet raised (Assists in reducing stress)
9. Regular check on ears ( build up of wax can have a marked affect upon hearing impairment...syringing may be required to maintain maximum performance (particularly in the unaffected ear) and per Dr Medbery on the CKPSG 'site, it is a completely safe procedure for those with AN)
10. Engage in a passtime or hobby (keeps the mind off the 'little bugger')
There may well be an element of psychology involved but this regime has certainly worked for me over the 5+ years since diagnosis. My last MRI scan indicated a reduction in the size of my AN and whilst it was only by an insignificant 1mm it was nevertheless a tremendous morale booster and incentive to continue with the 'watch and wait' routine.
Derek
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Well done, Derek
I will add, hopefully without controversy, Prayer & meditation - which, one believes, directs us on the path to acceptance, tolerance, happiness, joy, faith, hope, and even Love.
After all, if we are to be shining lights, we must let our light show, and not hide them.
Frank
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I think on top of the excellent list, I would add Humor.
It helps with the ringing in my ears, when I joke about it. It helps when I am always startled at work when some one walks in my office because I now have no sense of direction. It helps when I can't make out the right words and give some goofy, off-the-wall answer. It helps others relax around me when they know it is ok to laugh. It keeps me feeling in control of the situation and putting the whole thing in perspective. It is scary, but, today, I can laugh at my foibles.
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I totally agree with the observations of 'Frank' and 'Maude'.
Determination, strength of character, will power, self belief and inspiration from your religious conviction will all undoubtedly greatly assist in dealing with the AN situation particularly so with regard to the 'watch and wait' mode.
A good and 'warped' sense of humour is also an essential attribute. I have lost count of the occasions that my AN has managed to get me out of a domestic 'hole' particularly with regard to birthdays and anniversaries where I am sure divorce would have been threatened if I were not able to blame my moment of forgetfulness etc upon my AN pal!
Derek
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My personal Kudo's to those of you patient enought to watch and wait.....auuughhh. I dont think I could have taken it. Although it probably would have influenced my decision some if my little growth could have at least been positively identified..but there were a lot of ifs in my particular case.....
I loved your list, and will have to follow it for the 6mos and 1yr follow up from CK..so even though I am not on watch and wait..I will still have to wait.....so I will abide by your list to keep my sanity.
Great post!!
Ceeceek
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Glad you liked the list Ceeceek..... the regime very quickly becomes the acceptable 'norm' once you get into it. I found the most difficult one to maintain in the early stages was drinking 2 litres of water per day....certainly plays havoc with the bladder (well certainly so at my age) until you get used to the increased volume intake!...but well worth persevering with for the long term health benefit.
Derek
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An excellent post today in the thread 'When is it the right time to watch / wait....' by Dave (Madshackle) who after a year in 'Watch and Wait' mode has realised that it is not a state of denial but in fact is doing something positive about the AN condition.
I think that the aspect of rationalising and accepting 'Watch and Wait' as a positive step in the treatment options (when acting upon professional medical advice) can rightfully be included as a 'Top Tip'.
Derek
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Derek: you are AWESOME! what a great list (even for us who have had procedures done).. Thanks for being such a great leader and inspiration for all of us. Annie :P
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Hello:
This is for all of you who are waiting and watching...I recently had my surgery for a 1.3 by 1.9 by 1.5 an at House and could not have been happier with the outcome.
I know the anxiety is terrible but had I waited and watched, I think the tumor would have attached to my facial nerves ( surgery showed it already was beginning but I had zero symptoms) ...as they discovered I already had no balance nerve on that side...yet I was walking normally without any vertigo or real symptoms but a full ear feeling.
I thought I was fine and was considering waiting, or gamma, as I feared surgery too....I was soooo wrong.
I travelled alone, stayed at New Otani Hotel, on Tuesday evening, which provides a free shuttle to House, enjoyed the hotel, Chinese restaurant, and spa there (even had a facial and oriental massage)...then went for all my appointments on Wednesday and had the surgery on Thursday, intensive care Thursday evening, Friday up and trying to walk with a walker successfully, rested Saturday through Tuesday in the hospital, and got out Wednesday morning...
stitches out on Thursday morning back at House, and Fri and Sat visited the LA area as mentioned in next paragraphs....
Drs. were wonderful, I awoke without vertigo, felt a little woozy and was up by the 2nd day....by the 5th, left the hospital, went back to the hotel, ordered room service and stayed there until time to go home.
I recommend ordering chocolate ice cream via room service in the evening....watched movies , had cable, took my shower, hair was barely shaved...did just fine...so do not be frightened...
Hotel provides a free shuttle both to House and St. Vincent's Medical Center. Fly direct thru American and request a wheel chair in advance...they board you first and take you off first that way...do not take luggage...just an overnight bag (skip check in that way) and mail it home from the hotel for $25.00...very easy....throught their business center...they also have free internet...
rooms were beautiful....no problems...I used room service for ice cream (you can tell I enjoyed that) at night and ordered a big American breakfast for 17.00...my treat to me......and I did this trip alone as my kids were in school.
I was determined to take a tour of Hollywood and was able to book it at the hotel. I even visited the Ole Henrikson Spa in Beverly Hills and did a half day of beauty as it is the only location for his services... , could not resist....also got to see Rodeo drive on the tour and actually walked it.
I left my home town on Monday, had the House appointments on Tuesday (stayed Tuesday night at guest house, thinking I would be almost at House the next morning) but you cannot stay alone there after surgery, so after being hospitalized 5 nights, was discharged Wednesday, and just went back to the hotel, on Thursday visited the Henrikson Spa in Beverly Hills, Friday took my Hollywood tour, and by Saturday flew home.
Make sure it is a direct flight and prebook your shuttles from LAX round trip...$15.00 one way...
Also, Take prime time to the airport and prebook that too...round trip....about $100.00.
Hotel was around $95.00 per night and worth it...Seton is kind of hot and depressing....no tv, phones, or people around either.
When you are discharged you receive 5 prescriptions and need to get those filled....be prepared for that..no pharmacy at the hospital
I had to get a cab to a pharmacy from the hotel...recommend Walgreens or CVS...hotel can help on that too....but concierge cannot deliver because one is a potent pain killer you have to sign for in person. ( I never took it either).
My point is don't be so afraid as keeping this thing is a constant stress which does not leave you.
I returned to work 10 days later, was driving by 2 weeks, and now feel ok...just don't push bending over and coming up too quickly. Don't lift either.
You tire easily but now one month out am fine. Keep eye drops with you at all times in case eyes feel dry....that get better with in two weeks....but was annoying. It is because nerve to tear duct gets bruised during surgery I am told.
My point is do not fear the surgery as it was well worth getting rid of the problem.
Best of all, I feel 20 years younger, as things look brighter, no head pressure or what they call foggy brain...morning headaches, mild tinnitus went away, and I did not know how lousey I felt until I got rid of the an...
Now I know know I had thoses symptoms but could not tell until after surgery which took it all away.
I was actually really dragging and did not know it.
I thought I was stressed or over tired from work, now I feel I got a real life back and that is no exageration at all
Prior to surgery I felt lethargic with low energy....so my brain was on over drive to keep me balanced. I now see the difference and can't believe how much better I feel.
My advice is to leave it to House and whatever they recommend just go with it as you are in wonderful hands and they will not hurt you in any way. Right up until the end they left the decision up to me. No pressure at all.
Just get better and on with your life and best of luck to all of you!
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Irish,
What an inspiration! You are the bravest person, and your suggestions for travel are very helpful.
mhs
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Hi there 'Irish'...
Congratulations upon the initial success relevant to the recent surgical removal of your AN. You are obviously aware that you will require regular MRI scans and expert medical advice which, as has already been stated, is in itself a form of 'watch and wait'.
You have indeed been very fortunate that to date you have not had any adverse post-surgery problems and I do hope that the situation continues for you to an eventual total recovery.
Of course any form of medical intervention has attendant risks be it microsurgery or radiosurgery which is the main reason why those who choose to 'watch and wait' do so acting upon professional medical advice and regular MRI scanning in order to avoid any remote possibility of such adverse and often permanent problems from occurring.
One aspect of your post that shines like a beacon is your positive decision to decide upon microsurgery which you obviously elected following extensive research and I believe we can rightly include the undertaking of 'thorough and extensive research prior to any ultimate treatment decision being finalised' as a 'Top Tip'.
Derek
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Irish211:
Thanks for your positive, detailed, informative post.
Like you, I had microsurgery (+ FSR) for a large AN (4.5 cm) last year (see my signature) and have experienced an excellent outcome, for which I'm truly thankful. However, to be totally honest, had my AN been small enough to treat without surgery, I would have. Had it been small and not growing, I would have been happy to 'watch-and-wait'. While, as you learned, surgery is not always traumatic and can produce a non-problematic outcome, as yours and mine did, surgical AN patients can, as Brucifer mentioned, have problems, post-treatment. Those problems may be mild - or severe. A lot depends on the doctors skill, location of the tumor and it's size. Frankly, no surgeon or radiation oncologist can guarantee the outcome of either approach - or both, in my case. This makes AN patients wary and willing to closely monitor their small AN with annual MRI scans, even if that means an MRI every year for ten years or more. Frankly, I would do the same thing in their place. As it is, even with surgery and radiation and a clearly shrinking AN showing definite necrosis, I'll still have to undergo MRI scans every year for many years. I don't mind, it's certainly the prudent thing to do, but I see little difference between this mild inconvenience and expense to monitor a dying (and hopefully dead) tumor and watching-and-waiting a tumor that may not grow or may even die on it's own some day.
I celebrate all good surgical and/or radiation outcomes for AN patients like us but what approach to take in dealing with our AN is strictly a personal decision made by the patient, one hopes, with knowledge, caution and a physicians supervision. Surgery may not always be as scary as some assume but 'watch-and-wait' is not an unreasonable approach to take, when feasible. I respect the AN patients decision to do so and don't feel as if they need to be 'talked out of it' or viewed as wimps for not undergoing surgery that may not be medically necessary - for them. As we are all individuals with a different 'story', our individual decisions on how to deal with our condition should always be respected. I'm sure you do and are only attempting to be encouraging. However, I feel that we have to allow for other folks individuality and their medical decisions, made sensibly, as most are - even to 'do nothing' - must always be respected, as they respect ours. I'm just sayin'. :)
Jim
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I am a fairly strong willed character, with rational thought processes and who is well able to apply common sense and logic to most of lifes challenging situations. I also appreciate the important significance of self belief and where applicable, the application of religious faith in furtherance of dealing with the aspects of extreme physical and emotional situations such as dealing with the AN problem.
I would be interested to learn of any other positive therapies that others practice and which might be of ultimate benefit to the rest of us who cope on a daily basis with the acoustic neuroma condition and with other similar traumatic situations and problems.
Derek
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Maybe I just have my head in the clouds, but once my neurosurgeon advised the "watch and wait" approach, I rarely even think about my AN until January, when I have my yearly MRI. So far it hasn't grown in 4 years, though after my next MRI I'm going to have them compare it with the first one to see if the change from year 1 to year 5 will show something. If the change has been almost imperceptible each year, perhaps the accumulated growth will show something different. Anyhow, I'm almost 65 and have been doing most of the suggestions for a long time just to maintain my health as long as possible. Many years ago, when it was the fashion, I learned Transcendental Meditation, and when I'm stressed I use it.......and it works! At least it helps.
My doc said that since I have no symptoms other than tinnitus (and I have it in my non AN ear too!) and diminished hearing in the affected ear that watch and wait was appropriate. He said that any surgery option would take a minimum of 15% of the hearing in my affected ear, which would effectively make it almost useless. So I hope I never have to do it.
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Great post Sharon and worthy of a 'Top Tip'
I have to say that I have never previously considered the aspect of Transcendental Meditation but having looked it up on Google it has generated my interest and I intend to carry out further research.
Derek
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Upon diagnosis it is usual and normal to initially experience a multitude of emotions such as shock and fear of the unknown etc. Then at a later stage when composure and a desire to fully understand the AN condition sets in, it is usual to spend many hours accessing the countless internet websiites and hopefully eventually access the ANA Discussion Forum which to my mind is the ultimate source of practical information and advice.
Whilst it is an extremely comprehensive data base for information relevant to the AN condition it is of course totally dependant upon inputs from those whose advice and experience is invaluable to others who are newly diagnosed and often in desperate need of reassurance and guidance.
However, from a personal perspective having constantly accessed this 'site on a daily basis and provided regular inputs, I have recently reached the conclusion within my 'watch and wait' mode that the less I think about my AN condition (which fortunately has only minor side-effects re SSD) the easier it is for me to accept it. Therefore I no longer access AN related websites on a robotic daily basis and my now infrequent access has produced a theraputic reaction in that my AN is no longer the main feature in my daily routine.
I think that excessive use of the internet 'sites can be counter productive but used sensibly they are indeed a most useful tool in the AN chest.
Derek
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Here's another tried and tested tip that has worked for me and I recommend that you give it a try.
Set yourself a personal challenge which you are determined to achieve and be totally committed to the task that you have set.
Having regularly undertaken brisk daily walks and motorcycling in order to assist with my balance, I have recently acquired sufficient confidence to use an extending ladder to carry out DIY tasks some 20 feet from ground level.
A relatively unremarkable and simple task in normal circumstances but it was my personal challenge that I had set for myself and having succeeded, it has been a great boost to my morale.
Derek
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Just recently ascertained from a reliable medical source that adrenaline may act as a tumor stimulant and therefore whenever possible it is adviseable to minimise undue stress.
Derek
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Hey Derek! That's an interesting factoid! What is the source of that so I can read up more? I'm sure my CB would like to know as well since I'm constantly running high on adreneline and have/had many growths.
thanks!
Phyl
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Hi Phyl...
The source is no other than our tried and trusted friend Dr Medbery on the CKPSG 'site.
I raised a topic with him yesterday under the thread 'Theme Park Scary Rides' requesting his opinion as to whether riding on super-fast theme park rides could have any adverse effects upon someone diagnosed with an acoustic neuroma. He suggested that it should not but he qualified his opinion with the caveat that "adrenaline may be a tumor stimulant."
Regards
Derek
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As an initial goal in furtherance of achieving good balance, aim to put your socks / undergarments on / off without leaning agaiinst anything for support.
It might be adviseable to be adjacent to your bed when practiciing this routine in the early stages as it makes for a softer landing!
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I do a brisk daily walk of 5 miles over varied terrain as part of my regime to maintain good balance. In furtherance I personally have found it beneficial whilst continuing to walk forwards, to occasionally look up at the highest point of a building and to also glance over my shoulder. I constantly aim to increase the time that I can maintain my eye contact whilst undertaking these tasks....whilst making sure that I avoid bumping into trees etc!! (lol)
Derek
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Hi Derek,
Thanks for the TopTen list, it is similar to mine but I have a few more. I was always counting on mine choosing "involution" and ending with just a shadowy trace of a dead AN, I was so upset to find every MRI proving no change in that direction. I know of only one patient whose AN shrunk to half the size. It was such a hit for us (the previous ANA list before the forum). Apparently involution may occur to up to 17% of patients but since 90 % or more of them are having treatments before the shrinking has a chance to happen, it is difficult to assess and make statistic. I still expect mine to (at least) not grow significantly enough to force me into surgery. The present size would forbid radiation anyway.
I will write my list soon and send it to you.
Best regards, antoinette
AN since 1990/92 - dx 97 - no treatments 2cm.9
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Hi all...
Another tip primarily intended for the newly diagnosed...
If you have any AN queries including matters relevant to the 'watch & wait' mode and you would prefer a professional medical response and guidance, I can unreservedly recommend access to the Cyberknife Support Group at www.cyberknifesupport.org/forum
Just click onto 'Brain' and you can send a question to the Doctors who will normally respond on the same day...and it will not cost you anything!
Regards
Derek
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A brain training tip which may assist with improving matters relevant to single-sided deafness...
For the past few months I have increased my visits on foot to busy city / town centre locations where there is a high volume of vehicle and pedestrian use. This exercise requires constant concentration, awareness and turning of the head in coping with the many and varied noises and sound levels applicable to busy urban areas with particular emphasis on learning to identify the all important aspect of direction of the various noises.
I have personally gained benefit from the exercise in that my ability to identify the direction of sound,particularly when at social functions etc, has vastly improved and I now find that the hitherto necessity to constantly assess sound direction has greatly diminished.
Give it a try...but take care in that traffic!
Regards
Derek
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Great list it reminds me of Letterman's top 10. I think I would add time with Family.
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Hi Derek,
Thanks for the TopTen list, it is similar to mine but I have a few more....I will write my list soon and send it to you.
Best regards, antoinette
AN since 1990/92 - dx 97 - no treatments 2cm.9
Hi Antoinette...
Eagerly awaiting your additional list of Top Tips!
Regards
Derek
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Hi all...
Another 'tip' when you decide to watch & wait is to have lots of self-belief and to acquire an abundance of PATIENCE!
I developed total hearing loss on my affected right side within weeks of diagnosis 6 years ago. I initially found that aspect very frustrating and considered the possibility of being fitted with an aid such as the BAHA but decided that such a deviice was not suitable for my personal lifestyle. However, gradually over time, nature has kindly assisted in compensating the effect of single-sided hearing loss and I now firmly believe that the natural compensating process together with the regime of 'tips' (as per my original post) that I have religiously stuck to has enabled me to function socially on a daily basis with absolutely no problems. It has certainly worked for me.
Regards
Derek
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My wife usually retires to bed before me and being a considerate husband and in furtherance of not waking her by switching on the light (if I did she would murder me!), I tend to undress and visit the bathroom etc in total darkness. This habitual performance has in fact had considerable theraputic benefits from the AN perspective in that it has been a very successful exercise with regard to assisting in improving and maintaining good balance. Give it a try...but you are not allowed to yell when you stub your toe!!
Regards
Derek
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Hi all...
Just wondered what the motivating factors were in influencing your decision to go the 'watch and wait' way which could be useful tips / advice for those fortunate enough to have a choice of treatment options and who are contemplating 'watch and wait'.
For me, now into my 7th year since diagnosis, it was the fact that I did not want to involve myself in any unnecessary morbidity risks, however minimal, that are associated with any form of AN treatment and postponing any non-essential treatment until such time that I am advised that intervention is required allows me to take advantage of ongoing new developments and techniques associated with with the various treatment options.
Derek
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My husband and I find this forum very useful, but can I just point out - some of us have not had a choice regarding the "watch and wait" status. This has not been an option for my husband who was diagnosed with a recurrence of his AN in January of 2007. We don't understand why this has been forced on him as we are both of the opinion that taking into account the size of the tumour, treatment would be referrable sooner rather than later.
We are actually considering moving to a different part of the country so that we could be referred to a different hospital as my husband has been told he can't have a second opinion.
followinghim
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Hi there 'FollowingHim'...
Just wondered whether the aspects that I raised in my 2 x PM comprehensive responses to you on 12th February relevant to these same matters were progressed as I cannot envisage any alternative strategies being viable within the UK?
The fact that you are having to contemplate moving to another part of the UK in order to enhance treatment opportunities for your husband is most concerning. If I can be of any further assistance please do not hesitate to contact me.
Best Regards
Derek
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(Derek, off topic, CB and I will be in the UK end December -- tix already booked. Will be based in Dorset and some time in Central London. I know it's holiday time but any UK AN'ers I can meet would be fab. JeWeL also noted to me she lives approx 10 miles from where we will be staying in Shaftesbury, FYI. Phyl)
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Hi again Derek,
My husband wrote a letter to his neurosurgeon explaining that he doesn't want the micro-surgery and would like to be referred with a view to possibly following the radiotherapy route but we still haven't heard anything from him.
Thank you for your kind response and we will keep you posted.
Kind regards
followinghim
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(Derek, off topic, CB and I will be in the UK end December -- tix already booked. Will be based in Dorset and some time in Central London. I know it's holiday time but any UK AN'ers I can meet would be fab. JeWeL also noted to me she lives approx 10 miles from where we will be staying in Shaftesbury, FYI. Phyl)
Hi Phyl...
There is a probability that me and my 'better half' will be visiting our son in CA this Christmas but I would love the opportunity to meet up one of these days. As an aside...congrats on the great news that the little bugger has continued to shrivel and I am of course referring to your AN!!!
Regards
Derek
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Hi again Derek,
My husband wrote a letter to his neurosurgeon explaining that he doesn't want the micro-surgery and would like to be referred with a view to possibly following the radiotherapy route but we still haven't heard anything from him.
Thank you for your kind response and we will keep you posted.
Kind regards
followinghim
This sounds typical of NHS inaction...please do not be fobbed off. I am not aware how long it is since your husband sent his letter but as a starting point you could consider telephoning the relevant neuro's secretary indicating that you require an urgent response to the correspondence prior to considering your further action. From personal experience in dealing with the NHS you will have to fight long and hard to get the required result and as previously discussed there are a number of non-cost options available to you which can be used in furtherance of effecting a successful conclusion.
Best Regards
Derek
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Hello
I am new to this list. I was diagnosed with AN about 4 years ago, I wait and watch. I feel lightheaded 24/7, but my Dr. at the House (Dr. Derald Breckman) is not recommending surgery, as the tumor is very small. Sometimes I get very discouraged about my symptoms, also feel very tired and as if I was drunk, head heavy. Do many of you experience such symptoms? How do you cope?
Yona
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Hi there 'Yona'...
A warm welcome to the forum and sorry that you qualified to join us albeit you were diagnosed some 4 years ago.
It is most unfortunate that you have such adverse symptoms with a 'very small' AN and one would hope that your neuro is aware and has discussed and advised on your situation.
Irrespective of the size of the AN it is an accepted fact that the exact location of the tumour can produce a variety of symptoms which can differ markedly from person to person. For example my AN is 1.9cm and I consider myself most fortunate that currently my symptoms are confined to single-sided total hearing loss and very minor occasional tinnitus.
A search of the various threads on this forum may well produce the answers and advice that you require and hopefully someone who has your symptoms will respond.
Best Wishes
Derek
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Hi all...
Just had the good news from my neuro that my recent MRI scan result indicates no changes and that I can continue with the 'watch and wait' routine.
An interesting aspect is that upon diagnosis in 2002 the max dimension of my AN was verified as 2.5cm yet the latest neuroradiologist report lists the max dimension as 1.8cm. Even allowing for discrepencies in the calculations re different radiologists and equipment etc I am pleased that the experts have the 7mm differential in my favour! Now I am wondering whether there might just be an element of truth in the 'myth' that as you get older the growth rate of the AN diminishes or perhaps....regresses!
Regards
Derek
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Derek, you terrific bloke! Congrats on this news..... hanging tough and doing ok... me likes to hear that! :)
Cheers!
Phyl
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Derek,
I calculate that as roughly 1 mm per year, so if you can make it to 82, it should disappear entirely!
It is not everyone that can report shrinkage even after treatment, so reporting it without any treatment is a double bonus.
Congratulations on a fine result.
Steve
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Phyl / Steve...
Thanks for your good wishes.
I am rather sceptical that my AN has actually had a 7mm recession of growth rate over the past 6 years and tend to think that the original estimated dimension was somewhat exaggerated. However the fact that there has not been any meaningful increase in the 6+ years since diagnosis is indeed very welcome. Whether or not there is any correlation with the 'top tips' regime (as per my OP) that I strictly follow is also debateable but I remain optimistic that the routine is personally of benefit to me and I certainly intend to continue with it albeit I accept that it is probably more psychological than of actual physical benefit from the AN perspective.
I like your analogy theory Steve and never thought that I would actually look forward to being 82 years old...bring it on!
Regards
Derek
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Just a wee point of interest relevant to private insurance cover, particularly with regard to those of us in the UK.
I have had private medical care cover for a number of years by courtesy of my former employers who operate a scheme controlled by a board of trustees who are also employees of the relevant organisation so therefore it is not a typical insurance company arrangement. When I originally joined the scheme (a few years prior to my retirement in 2004) I was assured that cover would remain constant without an upper age limit.
Surprise...surprise...they have just decided to change the rules and will not now cover former employees upon reaching their 65th birthday... which includes me next year!
Having regard to the salient fact that since my AN diagnosis in 2002 they have been paying the costs of my annual MRI scans; consultation fees with my neurosurgeon and agreed to pay for all costs relevant to any proposed private microsurgery or stereotactic radiosurgery, this news was initially very concerning from a financial perspective as no other insurer would provide cover for a previously diagnosed AN condition.
Fear not though...as my GK neurosurgeon, in whom I have total trust, has informed me that he will ensure that I will still be monitored by him personally; that he will arrange for annual MRI scans / consultations as per the usual format and ensure that any future GK treatment will be administered by him personally, all at no cost to me courtesy of the the good old UK NHS ( National Health Service)!!
There may well be other ANers with a similar dilemma in the future who can now be assured that the NHS can provide the same treatment faciilities in the event that the private medical care arrangement is no longer an available option.
Regards
Derek
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I have recently found benefit from brain training exercises such as crossword puzzles and similar activities. Anything that assists in keeping the old 'grey matter' in good nick is worth trying...give it a go!
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Hi Derek! What is it that your doing if anything that may cause the reduction in your AN? Thanks Mickey wait +watch
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Hi there Mickey...
As per my post in this thread on April 23rd...I tend to think that my AN has stabilised in size rather than reduced albeit I am a very happy chappie that it has not increased to any significant degree since diagnosis in early 2002.
I consider myself fortunate that to date, my only symptoms are total single-sided hearing loss with very minor occasional tinnitus neither of which cause me any problems whatsoever.
Whether or not the regime I rigidly adhere to (as per my original post in this thread) has any significance or whether my age is a factor in the stabilisation process are debateable points. However, I decided very early post diagnosis to adopt a psychological approach whereby the AN was not going to take control of my life and that I would control 'it'. So far that arrangement has worked well for me to the extent that there are days when I completely forget that I have an acoustic neuroma and tend to treat the annual MRI scan as akin to a visit to the optician or dentist.
Until such time that my symptoms increase or the AN decides to flex its muscles (if ever) I intend to remain in the 'watch and wait' routine rather than risk any side-effects, however minimal, that may arise from any unneccessary treatment intervention at this stage.
Regards
Derek
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Hi Derek, Went back and read your posts. Very interesting and inspirational. I`m hoping to follow your footsteps. I`m starting at 59 with one mri follow up coming in stable 12mmx06mm. Next due in Sept. and if stable again dr. say may go to yearly. My hearing is a little off in high pitched area and have tinnitus in AN ear. Found out this all by accident because I`ve had these symptoms for years. Just recently had a bit of clog in ear which I am now trying a short stay of predisone. It`s been three days and I feel great now. I really think my hearing improved and its agreeing with me. Four more days to go! I know a few other watch and waiters two, ten years and one close to twenty. All seem to have the healthy lifestyle. I`m also doing neuromonics which has relieved my tinnitus. Keep in touch! Youv`e been very helpful and informative. Thankyou, Mickey
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Just read a post over on the CK Patient Support Group site 'Brain' forum re a lady who had CK in 2002 for her AN which unfortunately has left her with total hearing loss on the affected side; constant loud tinnitus and facial numbness none of which pre-existed prior to treatment. Further, a recent MRI scan has indicated that the size of her AN has increased and further radiosurgery or microsurgery treatment is now being contemplated.
Whilst such failure of CK / GK treatment is extremely rare, it nevertheless illustrates that there are risks, however remote, applicable to the treatment of acoustic neuromas and my personal tip is that due caution and careful consideration should be exercised before leaving the approved safer 'watch and wait' mode and opting for treatment before it becomes absolutely necessary.
Regards
Derek
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Hey guys I'm on watch and wait as well. I just really like the MRI tube what can I say, those little plastic coffins are so much fun.
Anyways, Derek my question is for you specifically, and anyone else who can answer. You have on your list riding a motorcycle, I'm seriously considering purchasing one, but I'm totally reliant on vision for balance, do you have balance problems, and if you do, do you have problems riding?
Ethan
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Hii Ethan...
I perused your earlier posts in order to familiarise myself with your antecedents and if I understand correctly, I note that when you last posted on this website in 2007 you were only 17 years of age and had been diagnosed with your AN some months earler.
Your present post indicates to me that for one so young and diagnosed with such a health problem, you have a very mature outlook and a grand sense of humour both of which will hold you in good stead during your AN 'journey'.
With regard to your query on balance issues, I did experience some difficulty in the early stages pre and post diagnosis which diminished over the ensuing months by virtue of a dedicated daily routine and exercise including regular walking over variable terrain, all of which is outlined in my posts under the thread 'Top Tips For The 'Watch & Wait' Brigade'. Nature also compensated to a large extent in that within a year or so of diagnosis I had no balance problems whatsoever which fortunately remains the situation to date.
Prior to getting my motor cycle I did lots of practice on a pedal cycle in a safe environment which I would strongly advise that you do in the first instance. For obvious reasons of personal safety please do NOT ride a motor cycle before you are 100% satisfied that your balance problems have completely abated.
Best Regards
Derek
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Hi all...
A tip particularly for the newly diagnosed....do not get overly concerned (as I did) if your MRI report indicates seemiingly unnerving technical jargon. My intilal MRI report stated that I had 'prominent mucosal disease'. My consultant put it in layman terms stating " it means you have the ability to self-manufacture a lot of nasal mucus...SNOT" much to my relief!
Regards
Derek
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Ethan,
I have rode a Harley for 8 years but I have to say the past 2 years is less and less. I have to be having a good day with the balance and dizziness to have a good ride. I don't feel so bad about the less riding this year as we New Englanders have had rain almost every day and I am not one to be dizzy on wet roads. I would suggest trying out a small easily handled bike and see how you are and or get a trike that may work too. Whatever you decide, wear a helmet and don't do it if your balance is off.
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Just read a great post today in this Sub Forum by Katherine (km5) headed 'Yippee...and post script from mom of 23 yr old son with 4mm AN' which aptly outlines the importance of seeking as many professional opinions as possible prior to opting for early and often unnecessary treatment. In the circs quoted by Katherine, a microsurgeon and radiosurgeon apparently both recommended early respective treatment for her son's 4mm AN whereas a third AN specialist queried the length of time associated to his single-sided diminished hearing which ultimately identified that his hearing problem was apparent from early childhood and therefore at only 4mm it was thought that his AN had been present for a considerable number of years and that he was a suitable candidate for 'watch and wait' monitoring which is his present preferred option.
I would personally never advocate early treatment intervention unless initial diagnosis indicates the AN is of a size requiring early treatment or regular MRI scans indicate that the tumour is enlarging and / or symptoms are escalating.
I cannot see any valid purpose in opting for unnecessary early treatment and running the potential risks associated with either aspect of the treatment options until such time that it is an essential requirement...if ever!
One of our contributors uses the following quote within their signature...'It can stay as long as it behaves itself' which I think is very apt and worthy of including as a 'Top Tip'.
Derek
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This tip is specifically for UK based 'ANers' but could apply elsewhere if the criterion applies...
My medical insurers recently declared that they would adopt an upper age limit for clients which instantly precluded me from cover and because of my pre-existing AN condition I have been unable to find an alternative insurer who is prepared to cover me albeit my hitherto privately consulted GK neurosurgeon has fortunately for me, agreed to personally continue monitoring my AN and offer ultimate future GK treatment as an NHS patient should future intervention become necessary.
I now have to enter the UK National Health Service (NHS) system for my future annual MRI scans in furtherance of my 'watch and wait' routine and whilst the NHS organisation is basically a good system and is cost free to patients, unfortunately, unlike the instant service you enjoy with private medical insurance, with the NHS you usually have to go onto a waiting list for treatment and procedures such as MRI scans which could mean a wait of several weeks or months. My main concern was that the NHS MRI scanners and radiographers etc would perhaps be inferior to those in the private sector?
I checked with the private hospital which has carried out my annual MRI scans since diagnosis in 2002 and ascertained that the current cost of the scan and corresponding neuro report is £450 GBP ($664 US ). On enquiring further re any perceived differences between the private sector and NHS MRI scanning system I was surprisingly informed that the MRI scanners were identical and in fact in my area the private hospital actually sent the images to the NHS for preperation of the relevant neuro report!
I was intending to personally finance the £450 / $664 to 'guarantee' a high quality MRI scan and neuro report but my simple query has saved me a considerable and totally unnecessary financial outlay. Only thing to do now is book my scan EARLY to ensure my due date in April is met!
Merry Christmas & a Healthy and Happy 2009 to all members of our exclusive AN Club!
Derek
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Hello Derek and my other fellow "Watch and Wait" Brigade,
After almost 2 years of MRI's and cat-scan, and MRA, and the discovery of one Acoustic Neuroma, one meningioma and one Aneurysm, I have decided to accept these intruders as long as they remain stable. It's been a very long process, but I am so very much at peace with this and to just continue the monitoring. I totally agree with Derek and his philosophy! My symptoms of 60% hearing loss, and Tinnitis are all I suffer with and are manageable. I read everyones posts and admire all of you and the courage and determination so many of you display. I will continue to be a part of things, and wish you all heartfelt love and prayers.
Jackie
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Derek - As you and I are running neck and neck as the longest "wait and watcher", I was wondering if any of your doctors have mentioned being able to go to MRI's every two years? After my five-year mark, I was told I could wait till year seven but did ask to have one for my peace of mind at year six. When I go to see my neurologist this year, she will determine at the appt. via symptoms (a few minor but liveable ones) if I should wait another year. Also, hopefully as I read somewhere, our age (I am 62) may be a factor in slow growth.
Happy Holidays and a HEALTHY New Year,
Sheryl
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Hi there Sheryl...good to hear from my main 'competitor' again!
Since diagnosis in February 2002 I have had annual MRI scans in accordance with the advice of both my consultant micro and GK neurosurgeons. There has never been any discussion relevant to extending the periods beyond annually and I personally would not wish to extend the period. ANs are notoriously unpredictable and it is not unknown for an AN which has been dormant for a number of years to suddenly 'flex its muscles' and increase in size beyond the accepted 2mm per year growth rate. For that reason alone I would never contemplate going beyond the 12 months period between scans. Imagine going for 2 or 3 years then finding that the AN size has increased to the extent that your ultimately preferred non-invasive radiosurgery treatment is no longer an option...unthinkable! Irrespective of whether I have to eventually undergo microsurgery or radiosurgery I would still opt for annual scans for the rest of my life...just in case!
As I have said in previous posts, I have no problem undergoing scans and I have developed my mind set to accept them in much the same way as an annual visit to the dentist or optician...over and done with for another year. Just my way of coping with the situation I guess but I find that it works fine for me.
Sheryl, I am also a great believer in the speculative theory that the growth rate of ANs diminishes and hopefully eventually ceases commensurate with age. Whilst not particularly looking forward to the inevitable ageing process, such a theory if proved correct would be a very welcome compensating factor!
Best Regards
Derek
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Hi Derek - actually my tumor is not an AN but right next door on the 9th cranial nerve. I have heard that everything is so close between the cranial nerves that mine could imitate an AN in some respects.
Here is my interesting theory and I was hoping for a Nobel Prize but a few researchers I've been in touch with say there is no proof.
My tumor was incidentally found in November of 2001 measuring in at 9 mm (although another neuroradiologist thought it was a tad larger). Each MRI for the next three years showed a 1 mm or less pattern of growth at which point in 2004 it became stable at approximately 12 mm. Ironically in that year I had breast cancer surgery and started on an anti-estrogen drug called Arimidex. Since being on the Arimidex for the past four years, I have had NO growth or change in the tumor. I had tried to research and tie the estrogen theory to the first three years of growth and now being on the Arimidex to the four years of non-growth. Dr. Medbery on the CK board said there was no correlation and a well-known researcher in Boston for brain tumors (specifically meningiomas) said there was no proof. I do get to go off my Arimidex next summer as the breast cancer studies show no benefit to continue Arimidex after five years. Hopefully, after that, we'll still be in first and second place as competitors for a long time.
Take care,
Sheryl
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Sheryl...
Interesting theory you have re the Arimidex aspect and of course only time will tell on that one. Sure hope that when you come off it your little pal on the 9th cranial nerve will offer no objection!
My next personal goal is for you and I to celebrate 10 years in the 'watch & wait' mode and thats only 35 / 38 months away respectively...my goodness doesn't time fly by when your enjoying yourself!
Derek
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Hi all...
You may recall that in the past 12 months I have had to switch from private medical insurance to the UK National Health Service (NHS) system re my insurers having unexpectedly introduced an upper age limit for cover.
Just thought I would document my experience to date by way of a tip or two particularly for those who are UK based.
Unlike private medical insurance whereby appointments for MRI scans and with consultants is normally achieved with minimum delay, the NHS system can be a very frustrating experience. The current waiting period for an MRI scan in my area is about 3 months and in excess of 4 months to see a consultant.
Whilst I am fortunate in having been able to retain the services of the same micro and GK neurosurgeons who previously saw me as a private patient, my problem re early access to MRI scans and the consultants has been compounded by the fact that my GK consultant is located in a different health authority area some 200 miles away from where my microsurgery consultant is based in my home area. Whilst I am not contemplating microsurgey in the future (if I can avoid it) I nevertheless have to use that consultant's services to arrange my local MRI scans. I have therefore found it useful to personally contact the microsurgeon's secretary on a number of occasions to ensure that my MRI appointments are being processed at the earliest possible opportunity. This has proved to be an effective strategy for me.
I had my current MRI scan in March of this year and the present waiting list to obtain the results from my GK neurosurgeon means that I will not be able to get an appointment with him until August / September time!
Utilising the legislation contained within the Data Protection Act 1998 and for the modest total cost of £12GBP ($18USD) my local NHS Trust has agreed to provide me with a CD copy of my recent MRI scan together with a copy of the relevant neuroradiologist report which will be posted to me within the next few days. This will undoubtedly eliminate the unnecessary stress that I would have had to endure if I had had to wait until September for my results. There may well exist similar legislation for those outside of the UK.
Fingers crossed that my results will show no increase in growth now that I am into my 8th year since diagnosis. If the results indicate any problems then I will have obtained the information 5 months in advance which will allow me to take appropriate early action.
I will give you an update in due course.
Regards
Derek
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Wow, Derek! 8 years from your diagnosis! You are one patient guy! I couldn't have survived (emotionally, that is) watching and waiting for two months, much less 8 years.
I'm glad things are working out so well for you.
The information about insurance in the UK will be very helpful to many.
Good luck with your MRI results - and yes, please keep us updated.
Hoping for the best,
Jan
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Hi Derek! As a fellow W+W I admire your course of action. I`m hoping that your MRI`s come back stable. I guess every insurance plan has its ups and downs. I also have to go thru the system here in USA which has so many different types of insurance. Some Doctors take what you have some don`t and when your trying to coordinate everything it can get a little tricky. How are you feeling? Best wishes, Mickey
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Hi there Mickey...
Still maintaining my very positive and optimistic outlook combined with my daily diet, exercise regime and other 'idiosyncrasies' which are of course outlined in my original posts. Celebrating my 65th birthday today... healthwise I am tip-top except for this damn AN which I am determined will never get the better of me..so far - so good! Hoping you are also in good fettle Mickey.
Regards
Derek
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Happy birthday, Derek!
If you put your birthdate in your user profile when you registered for the forum, and you look at your profile today, you should see a little slice of cake with a candle on it. It only appears on your birthday.
I thought that was very cool 8)
Jan
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Hi Jan...
I wasn't aware of that feature...I input my birthdate and got my slice! Nice touch...thanks.
Derek
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Love your tips and suggestions. I am a cancer-survivor(metastatic papillary Thyroid CA) and a W&W AN gal (1.5 cm AN "mini"). After my cancer experience, I made even more healthy changes to my lifestyle - including alot of what you recommend. THen my AN came along requiring more of an emotional attitude adjustment. My AN has not changed for two years - and my cancer has not returned either. The positive benefit of having any illness or challenge in life is to assess what is important and take a stand on how things will be in the future. I do believe that attitude and positive lifestyle has a big impact on overall health. Something that has been VERY helpful to me is Mindful Meditation based on the work of Jon Kabat-Zinn. Google him, too. All meditation is good - especially when living with a chronic condition. We need to stay "balanced" - not just on our feet but emotionally as well.
Laughter is also very healing for me. I have been working on the "top ten funny things about having a brain tumor" and will post that as soon as it is complete. Not sure that anyone but this group can appreciate the humor in this!
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Happy Birthday Derek! I like your outlook and take alot of what you say into my regiment of doing things. Lets keep it going and hope for the best. Mickey P.S. Suz your very inspirational!
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I wasn't aware of that feature...I input my birthdate and got my slice! Nice touch...thanks.
I just happened to come across it on my last birthday and thought it was cute - so now I tell everyone about it ;D
Suz -
glad you like laughter - you'll find that lots of us (me, Lori, Kaybo, Ernie, etc, etc, etc,) love to joke around on the forum. Sometimes one of the moderators (hi, Phyl) likes to reign us in - but we still have a good time.
While I do have a serious side, laughter is the way I cope with a lot of things - mostly those that scare me - IMO it sure beats crying :D
Welcome to the forum. I think you'll like it here.
Jan
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Hi Derek - I'm still following right behind you in W&W - 7 years, 5 months. Happy Birthday to you ;D. I'm still behind you there too but not by much. Remember my theory on the Arimidex (posted in this link on December 10, 2008)? I went for my six-month breast cancer checkup and mentioned it to my oncologist especially since he told me to stop the Arimidex in June which will be five years that I've been on it - he said, "HHMM interesting - guess we'll see". Good news is that I'm still cancer free and graduated to checkups every year.
Please keep us informed about your results - I'll be looking for an update.
Sheryl (Packing and ready to leave Florida to spend the summer on Cape Cod!!! Yippee)
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Hi Derek,
Happy Birthday, and thank you for making my day yesterday. I was recently diagnosed and on W and W and have been going through a lot emotionally. Yesterday at work, close to lunch hour I started to have some anxiety again and I thought let me see what is happening on the forum and I found your story. After reading it, I went out for lunch to the mall, tried on some clothes and felt great and positive again. This morning back at work, some anxiety, shaking off a cold, and thought about your story again and starting to feel better again. Thanks again for sharing. Good luck!
Vivian
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Suz...
Great to hear that your AN has stabilised and terrific to know that you are clear of cancer. I'm certain that your very positive outlook and cheerful dsiposition have been a major contribution to your present situation. I will certainly take your advice and do some research on Mindful Meditation. Looking forward to seeing your post re ' top ten funny things about having a brain tumor'.
Sheryl...
Congrats on your super news that you are also cancer-free and have graduated from 6 monthly to annual check-ups.
Vivian...
Many thanks for your encouraging comments...it is very pleasing to know that my contributions may have helped in some small way.
Thanks also for your birthday wishes. Don't know about elsewhere but here in the UK your 65th birthday is synonymous with official recognition as an 'Old Age Pensioner' commonly referred to as an OAP as it is the age when all men are allowed to draw weekly statutory government pension payment which is also paid to women from the age of 60 years.
Derek
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Derek, how the heck I missed your burpday... I am so mad at myself! I hope you enjoyed your special day!
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Hi there Phyl...
Many thanks for your belated good wishes...my 65th 'milestone' wasn't one that I was particularly looking forward to so I've decided that from next year I'm going in reverse order each birthday so when I'm 109 I will be 21 again!
Good to hear from you again Phyl...I see that this 'Top Tips' topic has now had in excess of 7000 views. Can you please consider it being a 'sticky' in the Watch & Wait sub forum?
Derek
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well, m'dear "other" bloke... a very happy, belated to you and yes, you are only as young as you feel.. unless you are overindulging in Scottish bacon, Jaffa Cakes and Cadbury! :)
I've put in a good word to the "powers that be" re: making this a sticky topic in this forum.... so, I've gone to bat for you.... no guarantees but will see what they say :)
Again, happy belated "21st" birthday!
Cheers!
Phyl
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Hi all...
Here's my update re the results of my recent annual (the 7th!) MRI scan whereby you will recall that under UK legislation I requested from my local Health Authority a copy CD of my scanned images and the relevant neuroradiologist report as without this info I would have had to wait some months for an appointment with my consultant to obtain the results which creates an undesireable element of mental stress.
Well, having viewed the images everything looked to be OK from my 'layperson' perspective and I am delighted to say that the report also supports my opinion PLUS, the AN is now documented as being 1.5cm which is a reduction of 3mm since my last scan in March 2008! You may recall from my previous inputs that upon diagnosis in 2002 my (then) micro consultant informed me that the AN was 2.5cm and recommended 'early' surgical removal which prompted me on my very extensive research mission which eventually led me to this amazing website and resulting invaluable advice and empathy from others who had experienced the AN 'journey'.
Even allowing for discrepencies in the imaging process, it therefore appears that my annual MRI scans have indicated a gradual reduction in the size of my AN over the past 7 + years whereby it is now showing an overall reduction of 1cm since original diagnosis!
I am optimistic that my GK consultant will be in full agreement when I eventually get to see him and I will update you accordingly.
In the interim I consider myself to be most fortunate with my current circumstances and truly believe that the following described aspects or 'top-tips' which I have strictly adhered to have been of invaluable assistance to me and which you may consider worthy of consideration:-
Total self-belief / faith
In-depth knowledge of all aspects of AN's via thorough research
Maintaining a healthy diet / lifestyle including daily recommended water intake
Regular moderate daily exercise regime to include brisk walking for at least 1 hour on varied terrain urban / country
Complete rest with feet up for 10 - 15 minutes during the day - vital to relax and eliminate physical / mental stress
Engage regularly in an activity which requires an above average application of balance / coordination (e.g. I ride a motorcycle)
Best Regards
Derek
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Derek:
Congratulations on the attenuation of your AN. This is relatively rare, but obviously, it does happen....and I'm glad it's happening for you. Thanks, too, for the addition to the 'tips'. All good. :)
Jim
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Hi Derek! WOW! That is fantastic! I`m hoping to follow in your footsteps. Have been going on two years with this coming AUG. MRI. So far everything is stable. I`m following all that you have said +. Want to thank you for inspiration and wish you well going into the future. Mickey
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Hey Derek,
Fantastic news! Wow, I am impressed and as others have said I love hearing from you, with again such good positive input! I passed the two year mark in Feb. and will have my next MRI in July and am hopeful for great news also! It is a challenge doing the "Watch and Wait" but I have definitely come to a calm peaceful place in that regard. Bless everyone where-ever you are on your AN journey!
Jackie
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Hi Derek,
As I mentioned before, I found your input very comforting and inspirational. I am so glad for your results. It looks like some day it may shrink for good. Keep doing what your doing.
Vivian
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WOWEE :o What absolutely great news!! I'll be happy to stay right behind you hoping to get news just as good at my eight-year MRI in November. Keep in touch.
Sheryl
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Hi all...
Here's my update re the results of my recent annual (the 7th!) MRI scan whereby you will recall that under UK legislation I requested from my local Health Authority a copy CD of my scanned images and the relevant neuroradiologist report as without this info I would have had to wait some months for an appointment with my consultant to obtain the results which creates an undesireable element of mental stress.
Well, having viewed the images everything looked to be OK from my 'layperson' perspective and I am delighted to say that the report also supports my opinion PLUS, the AN is now documented as being 1.5cm which is a reduction of 3mm since my last scan in March 2008! You may recall from my previous inputs that upon diagnosis in 2002 my (then) micro consultant informed me that the AN was 2.5cm and recommended 'early' surgical removal which prompted me on my very extensive research mission which eventually led me to this amazing website and resulting invaluable advice and empathy from others who had experienced the AN 'journey'.
Even allowing for discrepencies in the imaging process, it therefore appears that my annual MRI scans have indicated a gradual reduction in the size of my AN over the past 7 + years whereby it is now showing an overall reduction of 1cm since original diagnosis!
I am optimistic that my GK consultant will be in full agreement when I eventually get to see him and I will update you accordingly...etc
Best Regards
Derek
Hi all...
Herewith my update as promised....I am very pleased...and relieved...to report that my consultant has only today informed me that he is in total agreement with my 'DIY' assessment of my recent MRI images and has given me his 'ok' to carry on with the 'watch & wait' for another year..so well into my eighth year now since original diagnosis and long may it continue that way!
Regards
Derek
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This is great news Derek! I do have to ask you something. What would you attribute in your lifestyle if anything which has brought about these amazing results? As I said before I`m trying to follow your footsteps (2 years W+W stable). I do have some of my own ideas and need all the imput I can get. Thankyou! Best wishes, Mickey
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;D YIPPEE from one of your "wait and watch buddies" heading up right behind you!!!
Stay Well,
Sheryl
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Mickey / Sheryl
Thanks for your encouraging comments and best wishes with your respective 'battles'.
Mickey... For what it is worth...the following is my personal perspective on dealing with the AN condition.
I strongly believe that if you are 'fortunate enough' to be diagnosed with an acoustic neuroma that is of a size suitable for conservative management (watch & wait) then subject to suitable advice from your neuro consultant together with annual MRI scans which hopefully indicate no increase in the size and on the proviso that there is no escalation in the symptoms, then I passionately believe that 'watch & wait' is the way to go. I cannot see any advantage in taking unnecessay risks, however minimal, which are applicable to microsurgery or radiosurgery if there is no immediate necessity for medical intervention particularly so if, as in my case, you are of senior citizen status!
I would like to think that my general lifestyle, diet and exercise regime that are well documented in my OP and subsequent posts in this topic have been fundamental in controlling my AN. Unfortunately I cannot substantiate that claim with any scientific or other specific evidence but I am a very strong willed individual with total self belief. I have rigidly adhered daily to every 'top tip' that I have mentioned since my diagnosis almost 8 years ago and I believe that therein lies the secret...total commitment and self belief.
Other than my immediate family, I have never disclosed my AN condition to any other relatives, friends, associates or work colleagues prior to my retirement 5 years ago notwithstanding the balance problems and hearing difficulties that I experienced in the early stages of my diagnosis when I was then a senior police officer in a major UK force leading homicide investigations. Indeed I cannot recall the last occasion that I openly discussed my condition with my immediate family, preferring that they remain free of any unnecessary worries or concerns so the aspect of support and understanding from family and friends has never been a requirement for me albeit I fully accept that such a strategy may not be a viable option for others diagnosed with the AN condition.
Further, and remaining on a positive vein, I have never accepted that I have a BRAIN TUMOUR nor that I am part DEAF... the words in capitals are expressions that I never use relevant to myself. I am more than happy to accept that I have a malfunction of an acoustic nerve resulting in diminished hearing on one side. Pause a while and consider the aforementioned two descriptions of the same condition....I know which one I would choose!!
Just my take on the situation and my own personal positive methodology of dealing with it... I accept that it may not be suitable for others to adopt but hey...as far as I am concerned it is tried and tested and works for me!.
Best Regards
Derek
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Hi Derek! I`m just letting you know that I`m following your footsteps and actually feel pretty good. I`m 61 years old and pretty much feel the same way you describe yourself going into the future. I also have made a coupe of adjustments supplement wise which I will mention only when I`m certain that progress has been made thru MRI`s. Thankyou for yor positivness and I will be checking out more of your posts, Best Wishes, Mickey
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Hi all..
Here's another 'Top Tip' for fellow 'watch & waiters' as we head into the festive season...
Firstly...Congratulate yourself that you are extremely fortunate to be able to 'watch & wait'
Next...Give your AN a vacation and have a determined mindset not to think about it over the holiday period
Finally...Do have a great Christmas and a fantastic New Year celebration
Very best wishes for a happy, healthy and prosperous 2010
Derek
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Hi Derek,
Thank you for another GREAT 'TOP TIP' for those of us in W &W.
AN vacation - sounds wonderful to me!
Happy holidays to you to and continued good health in the New Year!
Sincerely,
Sue
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Hey Derek!
ya know... I follow this thread... gain insight from it and watch how you keep adding wonderful info here! I commend you... wish you the happiest of holiday seasons.... and yes, will try to take an AN vaca... lordy knows I need one! ;)
Happy, HEALTHY prosperous holidays to you!
Phyl
Hi all..
Here's another 'Top Tip' for fellow 'watch & waiters' as we head into the festive season...
Firstly...Congratulate yourself that you are extremely fortunate to be able to 'watch & wait'
Next...Give your AN a vacation and have a determined mindset not to think about it over the holiday period
Finally...Do have a great Christmas and a fantastic New Year celebration
Very best wishes for a happy, healthy and prosperous 2010
Derek
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Derek,
Great news on you maintaining W&W status. I must say though that unless you have a magic potion, these AN's don't shrink without cause. I would dare say that the measurement process made by your initial doc was probably different to the measurement process made now. Some docs include the growth inside the bone structure, others don't.
Anyway, being able to stay W&W for so long is fantastic.
cheers
Laz
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Hi there Larry...
Thanks for your comments and hope all is well with you.
The only 'magic potion' that I am aware of is the excellent advice and guidance of my neuro together with the daily diet and exercise regime that I have adopted since diagnosis and which is well documented in this thread PLUS, my single minded belief and determined mindset that I am the one who is in control of the AN and not the other way round!
This philosophy works for me and that is the way it is going to remain...there is only going to be one winner in this contest and that will be me!
Best Regards
Derek
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Way to go DEREK! Your the General in this brigade! Right now I`m in officers candidate training hoping to be a 1st lieutenant by New Years. (3rd year) haha. Lets keep on keeping the enemy ANs where they belong. Happy Holidays, Mickey
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Derek,
I think I'll revisit your life style and grab some pointers.
cheers
Larry
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Sue / Phyl / Larry / Mickey...
Your respective comments are greatly appreciated and will certainly add to my resolve in the ongoing battle with the enemy!
Best wishes
Derek
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A Merry Christmas and happy holidays to all! Lets take this beautiful holiday season with love, prayers, and positiveness and apply it to our AN community and everywhere else needed. God Bless, Mickey
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Hi again fellow W&W's...
Just a brief update as I await my annual MRI due next month. Fortunately I have had no additional AN problems over the past year and I remain optimistic (as always) that I will get a 'pass' for another year which would bring me into my 9th year since diagnosis.
Here's another tip that you might like to consider. Singing is well documented for its therapeutic and physical health benefits so I have recently joined a group of fellow enthusiastic beginners in my area. I have already benefitted from the added confidence and sense of personal achievement that I have gained from the challenge of singing in a group and I am pleased to report that my single-sided total hearing impairment (note that I still refuse to use the 'deaf' word) has caused me no difficulties whatsoever...indeed I have even had compliments relevant to my singing ability albeit (as is my choice) I have not disclosed any aspects of my AN condition to my fellow songsters...just my way of coping with the AN problem as I prefer not to make it a public issue.
I will post my MRI results just as soon as I have them albeit I will again have to do an initial DIY analysis of the images as the UK National Health Service (NHS) can take quite some time to channel the official results.
Regards...and get 'singing'!!
Derek
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Hey Derek! Glad all is going well with you. Looking for some good news for you this MRI. Singing sounds like a great idea to help us ANers get along. May well have some thereputic overtones. haha! I`m going for my 3 year MRI in a few months. Like you looking for no intervention unless necessary. As for now I`ll be singing in the shower. Talk soon, Mickey
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Hello Derek,
Good for you that you have found singing so therapeutic! Unfortunately for those around me, if I were to sing they would all wish for double-sided deafness! Hahahaha! The good Lord didn't bless me with good vocals, probably because He knew I'd be a showoff! Anyway, looking forward to you "Pass" to next year also! My next one is also in a few months, I just passed the 3 year mark! Hopefully we can all keep going!!! Blessings to you and the rest of our W and W buddies.
Jackie in Oregon
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Mickey / Jackie..
Thanks for your comments. Just to mention further that in addition to the obvious social benefits gained from learning to sing in a choral group, I have also found that implementing the important aspects of correct posture and breathing in furtherance of good voice production, particularly when standing for extended periods, has been great exercise for the compensating balance nerve. Also...in having total hearing loss on my right side, my 'good' ear has had to work twice as hard to identify the correct pitch, tone, key etc of the notes being sung in order that I remain in tune thus I do believe that the hearing on my left side is more acute than hitherto. No scientific basis for this of course...just another aspect of self belief that works for me.
Regards
Derek
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Just had my 9th annual MRI scan and awaiting the result. For info my last three scans have been in diifferent hospitals who each use different types of MRI machine and diifferent neuro radiologists. My most recent scan was carried out on a newly installed latest model Siemens unit which reduces the time that the patient is in the scanner and when contrast enhancement is used, allegedly produces superior images with better differentiation between the brain and the tumour resulting in greater definition of the tumour environment.
You will be aware from my previous posts and from my signature, that upon diagnosis in 2002 the dimension of my AN was assessed at 2.5cm and that over the ensuing years the AN has apparently reduced to 1.5cm as per my last scan in March 2009. It will be most interesting to see what dimension my AN is now given using the latest Siemens technology etc and if it is still assessed at 1.5cm or less and with no problems being indicated, I will be a very happy man indeed.
I am dependent upon the UK National Health Service (NHS) with this process and the official results will not be made available to me for at least 2 - 3 months therefore, as per the same procedure whch I adopted last year, I will have to make application under the UK law Data Protection Act whereupon I will be provided with a CD copy of my scan images together with a copy of the neuro radiologist report then carry out an initial DIY assessment prior to the consultation with my neuro specialist for the official verdict.
I will of course initially post you with my own DIY assessment just as soon as I have the info which should be mid / late April.
Regards
Derek
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Hi Derek,
I am a newbie to the Watch & Wait Brigade. Your story has been inspirtational. My AN was just diagnosed in February. It is small; 6mm (x3mm x2 mm??). I've had a lot of anxiety about what I will do if the next MRI comes back that it has grown. There's insurance issues, employment issues, childcare issues, along with my own fears. Reading this thread has helped me to calm down and realize that I may very well be waiting and watching for a long time. (One day at a time) Your news is great, Congratulations! I'll be saying an extra prayer that your new MRI results are even better. Thank you for all of your helpful hints and tips. Thanks to everyone on this thread for putting a positive spin on this watch and wait status.
Lauren
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Hi there Lauren...
Sorry to learn of your recent diagnosis but a very warm welcome to this wonderful forum where you are among knowledgeable friends who can empathise with your your situation and who will always be ready to offer advice and support throughout your AN journey. Many thanks for your kind remarks and encouraging comments relevant to my posts on this particular thread.
I reviewed your previous posts to enable me to fully understand your circumstances relevant to your diagnosis and I note that your AN has dimensions that are rightly classified as 'small'. That salient point is a major positive factor for you in that you are very fortunate in having time to fully research all available treatment options including 'watch and wait' conservative management. Your ongoing thorough research together with the advice from consultants whom you fully trust and who have extensive experience in microsurgery and stereotactic radiosurgery relevant to the treatment and management of acoustic neuromas together with your own 'gut feeling' will ultimately lead you to the right decision.
I also noted that you have total hearing loss on your non AN side and that the aspect of total hearing loss on both sides would not be the major factor effecting your ultimate treatment decision re you already having the ability to communicate by sign language. Having due regard to that aspect I would be inclined to monitor the situation via regular MRI scans and act upon the advice of your consultant(s) relevant to being able to continue in the 'watch and wait' mode. Do not be alarmed if your next scan indicates a very marginal increase in the size of your AN as the MRI apparatus can produce inaccuracies and further scans may well indicate that the dimensions of your AN have not increased. The 'average' rate of growth is about 1 to 2mm per year so if your ongoing MRI scans all indicate that the AN is increasing in size then that is when treatment intervention should be your major consideration particularly if you have experienced an escalation in your symptoms.
Remember that irrespective of whether you have microsurgery, stereotactic radiosurgery or remain in the 'watch and wait' mode you will always require regular MRI scans in order that you can take immediate action in the event of re-growth occurring so you may as well remain in 'watch and wait' for as long as it is considered safe for you to do so.
Very best wishes with your ultimate decision....which will be the right one!
Derek
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Hi Derek - It's me - your fellow runner up wait and watcher. I'm at 8-1/2 years and glad to still be waiting. Sorry you have to wait so long for your results but it sounds like you have learned how to deal with that. At my last MRI in November of 2009 (after waiting two years), I was at first dismayed when told I had a 1 mm growth but then remembered the rule of "technical differences" plus the neuroradiologist informed me that their machines had been upgraded. I will return to MRI's every year for the next one but without any overt increase in symptoms, I have largely gone on with my life. My both parents have been diagnosed with Alzheimer's and have shown a decline plus my hubby (in the past 6 years) has undergone two craniotomies and Cyberknife treatment for a meningioma that keeps regrowing. The pathology showed it to be benign but a grade 2 which is more atypical. So I have had challenges to keep me otherwise busy :o
I am hoping that you get good results and please keep us posted. I want to keep racing after you for a long time or are you racing after me ;)
Sheryl
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Hello! Here is hoping that all our next your next mri`s come in good. Keeping the faith, Mickey
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Sheryl / Mickey...
Thanks for your posts and good wishes.
Sheryl, great to know that you are still my long-term sparring partner in the W & W routine....incredible that we are now into our 9th year since diagnosis and hopefully we will both be able to celebrate that 10th anniversary milestone! I feel sure that your next MRI result will indicate that the alleged 1mm increase was a mere technical blip and that 'normal service' has been restored. You sure deserve some good fortune with all the health problems that you and your better half have had to contend with not least the awful diagnosis of both your parents which I know from personal experience, will be extremely stressful for both of you in the caring role. My thoughts and best wishes to you and your hubby.
Derek
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Re my earlier post relevant to the therapeuitic benefits of singing... you may find the following research studies are of interest with regard to maintaining a good standard of physical and mental health, particularly so when in the long-term 'watch and wait' mode conservative management of the acoustic neuroma condition:
Gus Cohen of George Washington University, tracked a senior singers chorale in Arlington, Virginia and found that the singers suffered less depression, made fewer doctors visits and took less medications compared with non-singers.
Further research by Prof. Graham Welch of the International Music Education Research Centre established that people who sing are healthier than those who don't based upon the following criteria:
* Singing releases endorphins into your system and makes you feel energised and uplifted
* Singing gives the lungs a workout
* Singing tones abdominal and intercostal muscles, tones the diaphragm and stimulates circulation
* Singing makes us breathe more deeply than many forms of strenuous exercise so we take in more oxygen, improve aerobatic capacity and experience a release of muscle tension
*Most importantly, long-term health benefits of regular singing are well established and include the offset of dementia and Alzheimer's disease.
I have recently completed a beginners singing course and intend to join a choral group in my area as I have already experienced an improvement in my overall physical and mental health. This has to be a great way of taking your mind off the AN whilst providing a high degree of personal satisfaction particularly so when performing an activity requiring an acute sense of pitch and tone with only one fully functioning ear!
I can highly recommend it...go on give it a try.
Perhaps there other ANers who obtain similar health benefits from other activities and which may be of interest to us and worthy of adopting?
Regards
Derek
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Just had my 9th annual MRI scan and awaiting the result. For info my last three scans have been in diifferent hospitals who each use different types of MRI machine and diifferent neuro radiologists. My most recent scan was carried out on a newly installed latest model Siemens unit which reduces the time that the patient is in the scanner and when contrast enhancement is used, allegedly produces superior images with better differentiation between the brain and the tumour resulting in greater definition of the tumour environment.
You will be aware from my previous posts and from my signature, that upon diagnosis in 2002 the dimension of my AN was assessed at 2.5cm and that over the ensuing years the AN has apparently reduced to 1.5cm as per my last scan in March 2009. It will be most interesting to see what dimension my AN is now given using the latest Siemens technology etc and if it is still assessed at 1.5cm or less and with no problems being indicated, I will be a very happy man indeed.
I am dependent upon the UK National Health Service (NHS) with this process and the official results will not be made available to me for at least 2 - 3 months therefore, as per the same procedure whch I adopted last year, I will have to make application under the UK law Data Protection Act whereupon I will be provided with a CD copy of my scan images together with a copy of the neuro radiologist report then carry out an initial DIY assessment prior to the consultation with my neuro specialist for the official verdict.
I will of course initially post you with my own DIY assessment just as soon as I have the info which should be mid / late April.
Regards
Derek
Hi all...
I have now received a copy CD of my recent annual MRI scan results together with a copy of the relevant neuroradiology report and the indications are that the size of the AN remains the same with no problems being identified.
Regards
Derek
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Hi Derek - YIPPEE!! Glad you're keeping up with the longevity group - seems we've got at least one more ahead of us!!
Take care,
Sheryl
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Hey Derek,
Great report, again, may it continue that way for you and the rest of us W and W! I just hit the 3 year mark, and hope to continue!
Blessings to you,
Jackie in oregon
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Sheryl / Jackie...
Thanks for your good wishes and very best of luck with your respective future MRI scans.
Derek
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Hi all...
Another 'tip' re caution that should be exercised in furtherance of protecting your existing hearing when riding the extreme roller-coaster type rides at amusement / theme parks...
Recently a group of physicians at Henry Ford Hospital, Detroit, MI, referred to the case study of a 24 year old male who whilst riding on a roller-coaster, turned his head to the side just as the ride plummeted resulting in ear damage known as barotrauma. This is apparently caused by hard and fast changes in external air pressure relative to the pressure inside the ear equivalent to striking the ear drum with a force of 0.6 psi or 180 decibels. The faster the ride and the greater the change in altitude, the higher the resulting force that is applied.
Therefore the golden rule when engaging in such an activity is to ensure that the head is held back and not to turn the head to the side.
Regards
Derek
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I am so very appreciative of all of the wonderful tips, insights and caring apparent both on this particular thread and on this entire board. I have been in the "W&W" status for a long time, but don't have any particular insight beyond luck and perhaps a bit of stubborness. Upon diagnosis, I was immediately told to have surgery and decided to get more opinions and options. I just wish *this* wonderful resource had been available when I first received my diagnosis in 1996!
Regards and Warm Thoughts for All!
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Wow - 1996 - that's great - keep up the good work. How often do you have MRI's? There's a bunch of us that are ongoing with W&W - when I think I'm almost at a "decade" it's hard to believe.
Sheryl
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Wow - 1996 - that's great - keep up the good work. How often do you have MRI's? There's a bunch of us that are ongoing with W&W - when I think I'm almost at a "decade" it's hard to believe.
Sheryl
I keep thinking the technology is going to change tremendously so it ends up being a simple procedure...but so far that seems to be wishful thinking! As it stands now, I go every 3 years. I had been yearly, but at the 10 year mark, we decided that as long as I am relatively asymptomatic, to go with three years. Sort of feels like an oil change at this point! I am actually due for one and need to make that appointment.
How often do you go for an MRI>
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I had been yearly but then they switched me to every two years. This past December, '09 showed a 1 mm increase after two years. They are pretty sure it is a technical difference or due to the fact that their MRI machines were recently updated so, for now, I am back to yearly.
I do have a theory - because of breast cancer six years ago (no relation to this head tumor), I was put on Arimidex for five years which is an estrogen suppressor. I was able to stop the Arimidex in June of 2009 and now this 1 mm change shows up. There was actually no change/growth the five years I was on the medication. I've been trying to research whether these schwannomas are fueled by estrogen or if it could be possible that this is a meningioma that has been shown to enjoy dining on estrogen!! Actually my tumor is on the 9th cranial nerve rather than the acoustic (8th).
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Fellow W & Ws'...
Particularly so for those of us who have hearing loss on the affected side, it is vitally important that we take good care of the 'good' ear. Aside from the obvious precautions we can take applicable to theme park rides etc as previously discussed in this thread and avoiding noisy environments where decibel outputs can be harmful it is essential that we carry out regular maintenance.
In furtherance, with regard to the problem of ear wax which tends to accumulate more readily as we age resulting in diminished hearing levels, I regularly apply olive oil based ear drops thereby ensuring that the ear canal is always free of excess ear wax. I personally find that ear drops containing olive oil are prefereable being a more gentle lubricant that does not irritate the skin.
Derek
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I always try to apply something to at least muffle the sound coming into my ears on any occasion where excess noise is around. If I forget I pay the price of a higher degree of tinnitus for a while. I have never tried olive oil but have been swabbing my ears with a cotton stick which was recommended sometimes with alcohol every week. A few more days before my yearly MRI and I`m feeling pretty good. 3+ years since diognosis but I`m sure I have had this long before. Keeping the faith, long live W+W brigade! Best Wishes, Mickey
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Hi Mickey - make sure you keep us posted and good luck.
Re: ear wax - hubby was told to mix peroxide with warm water (about half and half) and use a dropper to put solution in each ear. After it sits for about a minute, tilt head the other way to drain and put solution in other ear and let it sit and then tip head to drain. Supposed to do this a couple of times a week, but we never remember and when we do, he notices much less wax on his hearing aids. So, I guess, it works.
Sheryl
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Yet another tip guaranteed to increase your overall fitness level...REDUCE YOUR USE OF THE CAR!
My daughter recently announced her engagement and her wedding is set for August 2011.
This has spurred me to increase my fitness level and in furtherance, over the last few weeks, I have ceased using my car or any other form of transport for any journey which is less than 6 miles. I have also increased my normal 1 hour daily brisk walking regime to 1.5 hours and have reduced my weakness for biscuits and chocolate bars! This has resulted in a welcome weight loss and a marked increase in stamina whereby I have reduced my waist size and best of all... my wife likes her new man! Believe me...you do not need to incur any financial outlay by joining a gym or taking up golf etc to keep fit as a good brisk walk and healthy lifestyle is all that you require but the walking has to be brisk in that you actually work up a sweat....walking the dog to the nearest lamp post etc will not suffice.
Most importantly, I have also been aware of a gradual reduction in my tinnitus which is no longer apparent and I have therefore edited it from my signature. Not sure whether there is any correlation with my revised fitness regime but I am convinced that a sensible diet, whereby I personally do not take any additional vitamins, supplements or additives, combined with regular exercise which also assists in obtaining a good night's sleep, are a contributory factor and 'key' to maintaining a good standard of physical and mental health which I firmly believe greatly assists with the ability to cope with the AN condition on a daily basis.
Regards
Derek
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CONGRATULATIONS on the good news from your daughter - what a wonderful incentive. Your new habits are good for everyone to follow - not only those with AN's. I've been having trouble with my knees and the orthopedic doc I went to told me that exercise and weight loss may help me avoid surgery. Did you know that for every pound you lose, it is equal to 4 pounds off your knees, i.e., a 20 pound weight loss is equivalent to 80 pounds!!
Sheryl
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Hi Sheryl...
Thanks for your good wishes re my daughter's forthcoming wedding. She is my youngest and the last to 'fly the nest'! You may like to view the ceremony venue at www.holysaviours.org.uk and the reception venue at www.lumleycastle.com
Your comments re every pound of weight loss equalling 4 pounds of pressure off the knee joints is an amazing statistic and a great incentive to anyone contemplating reviewing their level of fitness.
Hoping you and your hubby are both well.
Best Regards
Derek
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Hi all...
I have just been reading an article which reported that large dozes of vitamin B may assist in preventing the onset of Alzheimers disease. More interestingly perhaps, for those of us who wish to remain in the 'watch and wait' mode, the article also indicated that the human brain shrinks by 0.5% each year from the age of 60. This made me wonder whether there is in fact any correlation with the perceived myth that some acoustic neuromas may self reduce in size as we age. From a personal perspective, I am now 66 years of age so according to the stats my brain will have shrunk by 3% over the past 6 years and I have indeed had a reduction in the size of my AN over that period.
Whilst it is regretful that us 'oldies' have to lose an annual 0.5% of our brain volume mass it will be a most welcome side effect if the AN also suffers a corresponding loss!
Regards
Derek
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Interesting stuff Derek! It all makes sense to me especially just gettin into my 60's. If I get to 90 1/3 of my brain gone? Geez! thats the bad part haha! If the AN shrinks with it I`ll take it and by then that will be sufficient to operate a 90 year old body. As for the Vitimin and mineral and certain other natural substances, I`m a big fan. Don`t forget the Xercise! Best wishes, Mickey
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May be too early or statistically insignificance but the 6 month MRI shows decrease of 0.2 cm from the previous study. My hearing has IMPROVED.
Current AN or round meningioma diameter is 2.5 cm from 2.7 cm 6 months ago. Whatever, thanks god it's not growing !
Mickey/Darek, I have been " trying" to follow your protocols of vitamins, supplements plus walking.
The only other additional supplement has been Super fruit Formula consisting of Goji & Noni (recommended in this forum)
Next 6 months will show the real trend..
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Hi there 'rm'...
Great news for you...an apparent decrease in the size of your AN plus improvement in your hearing loss! Whilst these are still early days for you re your diagnosis was only 6 monhs ago and MRI imaging results can vary slightly due to technical aspects etc, nevertheless, any positive results such as yours are always welcome and what we all strive for. It is good to know that you are attempting to follow the 'Top Tips' regime and your good news will undoubtedly spur you on to continue the good work. Do keep us updated with your progress.
Best Regards
Derek
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Great News! Lets keep on doing what you have been doing and hope for more good things to come. This is very inspiring for all us hear on the W+W Brigade. Best wishes, Mickey
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Hi all...
Many of us in W & W have total / part hearing loss on the affected side and it is very important that we take great care of the 'good' ear via the obvious regimes of cleanliness and avoidance of excessive noisy environments etc but particularaly so with regard to the ageing pocess so, another top tip....
A recent study conducted in Australia known as the Blue Mountains Hearing Study whereby 2,956 men and women were monitored with regard to dietary lifstyles etc concluded that in those over 50 years of age who consumed 2 x servings of fish per week, hearing loss was reduced by a staggering 42% attibutable to omega-3 polyunsaturated fatty acids. Definitely worth putting fish on your menu!
Regards
Derek
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Derek!
Hallelujah! I just read this whole thread! What an inspiration! I just got diagnosed at 50 with an AN, seemingly smaller than yours (originally) Derek. How old were you when diagnosed, 58? Everytime I think about surgery and radiation it just doesn't feel right and I can't imagine it. I'm going to give this next 6 months my best shot at doing a major overhaul on eliminating stress and doing more to be healthy. Drinking more water was first instinct! I have a four year old and I have to stay young for her anyway! Thanks so much for staying with this and reporting back! You have totally inspired me!
C'est moi,
LisaM
BTW... very interesting correlation stated by Sheryl (?) with regards to estrogen... in my reading on this forum as well as on other sites I found it interesting that women who were in their third trimesters of pregnancy were diagnosed with very large ANs... I too feel there is some hormonal connection...
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Hi there Lisa!...
So sorry to learn of your recent AN diagnosis but congrats upon finding this amazing website which, as you are now aware, is a unique resource where knowledgeable folk will offer practical advice and guidance from a very personal perspective.
Being diagnosed at 50 years of age may well be in your favour Lisa as there is a theory that as we age the growth rate of the AN can stabilize or even, as in my case, reduce. I certainly hope that is the situation relevant to yourself. I was diagnosed 9 years ago when I was 58 and now at 67 I am awaiting the result of my recent MRI scan which will hopefully indicate that I am heading for 10 years in the 'watch & wait' mode.
I have reviewed your previous posts in order to fully appreciate your AN antecedence and in my opinion you present as a very self disciplined individual who is prepared to undertake maximum research and review all available treatment options prior to making that all important ultimate decision of treatment intervention or conservative management (watch & wait). You also have a great sense of humour and logical approach to your situation and therefore appear to have the right temperament for continuing in 'watch & wait' notwithstanding that your next MRI scan and consequent medical advice affords you that choice. I also note that you have a 4 years old daughter which is a major factor in your decision making process. Coincidentally, my wife was of a similar age to yourself when she had our youngest daughter so I can empathise with your situation!
I greatly appreciate your kind comments relative to my previous posts in this thread particularly so if they have been of benefit to you in your ongoing deliberations. Be assured LIsa that whatever your final decision is, it will be the right one for you.
Best Wishes
Derek
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Hi LisaM!
I just read your post on this thread and wanted to stop by and say hello!
Sorry you had to join our exclusive club, but.....WELCOME!
I am here with my sister, Bigsister and we are both in W & W mode.
Yes - i too believe that being 50+ years old has its advantages, so will continue in W & W as long as possible.
Take care and keep in touch.
Sue O.
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Hi;
Just a thought re, watch and wait ( conservative management )... If you are pretty young, say, under 35, please think about the logical outcome of many ANs during the course of a life time ( say, 80 years? ) before the auditory nerve is extensively invaded.
The auditory and vestibular nerves are not as resilient as the facial as they are sensory nerves, while the facial is a motor nerve.
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Hello Derek and fellow W&Wers,
Here are two interesting links on DCA (Dichloroacetic acid) which has been shown to shrink cancerous tumors in rats:
http://www.thedcasite.com/dca_safety.html
https://www.youtube.com/watch?v=TeA84udy7hY&feature=player_embedded
It occurs naturally in chlorinated drinking water (could the 2 liters of water per day Derek is drinking be helping to shrink his tumor?) Not sure what effect DCA has on non-cancerous tumors... does anyone out there in AN land know about this?
C'est moi,
Lisa M
Also posted this in Latest Drug Therapy...
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Derek...
Could you give us (me) the lowdown on your hearing? How much of it did you lose? I know that you said at one point it (your hearing and/or tinnitus) improved? My dilemma with waiting and watching is that I still have very good hearing in my left ear. I hope to determine next week what my chances are of saving it with endoscopic surgery (met with Dr. Shahinian last week and he is my man for surgery). From what I gather my hearing could go any day and once the nerve is damaged it does not come back.
Just started taking a supplement today called Nerve Shield. Have no idea if it will do me any good, but I like the name! It's a bunch of B vitamins, folic acid and amino acids. If I do the surgery the Dr. said that B-12 and folic acid were good to take prior to surgery as they promote healing. So hopefully I'm protecting my nerves while waiting and watching and at the same time preparing for surgery if need be!
xxoo,
Lisa M
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Hi Lisa - I haven't been on the board too often but happened to notice my name in your post.
I came to a dead end regarding the estrogen connection but still fully believe there may be some hormonal connection. Kind of strange that after five years of suppressing my estrogen because of prior breast cancer, that once I stopped the Arimidex my schwannoma (like an AN) should show a very minor (1 mm) increase. I Googled and researched and even wrote to a highly regarded neurosurgeon in Boston who is doing hormonal research on meningiomas (by the way, my husband has had three regrowths of a "benign" meningioma - two craniotomies and one CyberKnife treatment) - the doc said there has not been any correlation between schwannomas, AN's, and hormones - some evidence of hormones and meningiomas.
I am at the 9-1/2 year point of W&W with my yearly MRI due in September. I plan to reach the 10-year point in November and hope to beat Derek - I'm not sure if I'm ahead or behind him!!
Take care,
Sheryl
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Hi Lisa...
Many thanks for posting the links relative to DCA...very interesting factual info particularly with regard to drinking water...perhaps those 2 litres per day that I have been regularly knocking back are the 'magic potion'! ;D
With regard to your query about my hearing loss...For a couple of years or so prior to my AN being diagnosed in March 2002 I had problems with ear wax accumulating in both ears causing temporary diminished hearing and a degree of tinitus. Subsequent occasional syringing always rectified the problem. However, the syringing exercise in February 2002 still left diminished hearing on my right side and the subsequent MRI scan in March 2002 diagnosed a 2.5cm AN. My diminished hearing loss became total within a few weeks of diagnosis before I had the opportunity of obtaining medical advice or undertaking research into the various available treatment options including conservative management therefore my circumstances are somewhat different to your present situation whereby you apparently have excellent hearing ability on you affected side which you obviously would wish to retain.
Over the ensuing years my AN has apparently self-reduced to 1.5cm and nature has compensated my initial balance and hearing problems. My single-sided total hearing loss is of no real problem to me whatsoever other than occasionally at a particularly noisy social function whereby I am unable to clearly identify speech directed on my affected side but that is easily remedied via a strategic 180 degrees exercise! ;) Indeed I am now well able to identify directional sounds / speech and my tinitus is virtually non existent.
Whilst I would obviously prefer to have perfect hearing ability in both ears, I nevertheless would still opt for single-sided hearing loss rather than risk surgical or radiosurgical intervention if I can possibly and safely avoid such action neither of which has any guarantee of preventing hearing loss and also has other well documented attendant risks of morbidity. This of course, is my personal choice and I appreciate that others, including yourself, may not be in total agreement but life is all about uncertainties and calculated risks and gambles so to coin a phrase ' you pays your money and makes your choice'! :-\
Very best of luck with your ongoing deliberations Lisa and as previously stated, your ultimate decision will be the right one for you.
Sheryl...you are 4 months AHEAD of me. ;D
Best Regards
Derek
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Hi all...
Thought I would share my good news with you. I have just received the results of my annual MRI scan which I had in March this year and I am very pleased to report that everything remains as it was in March 2010 with no changes having occurred. So as I head towards my 10 years 'goal' in the W & W mode next March I really do believe that there is a correlation with my 'Top Tips' regime which I rigidly maintain....together with an element of good luck of course. ;)
Best Regards
Derek
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WOW, Derek! :) Congrats to you as you continue the W/W process. Great to hear that all is going ok, that things remain stable and you are hanging tough! May things continue this course for you! :)
Cheers!
Phyl
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Way to go Derek! Thats great news. I`m following your footsteps with the hope that W+W can really be a great alternative treatment. Maintaining a certain healthy lifestye which are in W+W posts I`m sure has alot to do with things. 4 years and counting... Best wishes, Mickey
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Oh Derek,
Such great news that Your MRI showed no changes!!! That's just what we all hoped for! You are a role model for all of us that choose the Watch
and Wait method. May your good fortune continue and inspire us! Hoping to follow your lead!!!
Jackie
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Derek ~
Congratulations on your recent 'stable' MRI report!
Jim
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:o WOWEE Derek - so glad to hear we are still "neck 'n neck" in our race to 10 years (or should I say head to head - LOL). I'll be having my yearly MRI and check-up probably in July and will keep you posted, but feel as if all will be stable.
Just as an aside, hubby who has been battling a grade 2, atypical meningioma went for his MRI checkup, neuro-oncologist, and neurologist appointments yesterday. All was clear with no tumor regrowth. He's had two surgeries and one CyberKnife treatment - the last surgery was July, 2009, and he's never gone beyond two years without recurrence so it's looking good at this point.
Stay well,
Sheryl
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Derek - AWESOME report! ;) Congrats!
Sheryl - here's hoping you can stay neck n' neck with Derek!
And good news for your hubby!
Sincerely,
Sue
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Many thanks for your good wishes and encouraging comments which are very much appreciated and Sheryl...good to know that your hubby appears to be doing just great and hopefully will also be joining the W & W brigade at long last! :)
Best Regards
Derek
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i am so very confused. I started with a neurologist ( watch and wait), a neuro-surgeon ( watch and wait), An otolaryngologist (watch and wait) and then an AN Specialist- BAM! let's get that puppy otta there! He gave me some very good percentages for no loss of hearing and no facial paralysis. So now do I wait and risk increased size lowering these percentages?? i just don't know what to do! ???
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Hi Cindy...
Sorry to learn of your AN diagnosis but a very warm welcome to this wonderful site where you will obtain practical advice from others similarly diagnosed and who can fully empathise with your dilemma.
It would be useful in the first instance if you could provide us with some initial information relevant to your diagnosis which will assist with responses e.g. age range; date diagnosed; symptoms pre and post diagnosis; size of the AN; whether there has been any change in the dimensions since diagnosis or escalation of symptoms etc.
Best Regards
Derek
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Just for info...
'Cindy' has now posted all of her relevant info in the General Category 'Inquiries' sub forum within the new thread ' Ballerina with AN' started on 23rd May.
Derek
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Hey Derek, great news on your MRI! Congratulations!
I'm posting a slight update on my situation below (posted here too http://www.anausa.org/smf/index.php?topic=15358.0). It may be helpful to Cindy or someone else.
I had my second round of hearing loss on Mother's Day and started a dose of steroids within two hours of the hearing loss, 60mg for 5 days and then tapering off quickly for 5 days. I started acupuncture treatments the day after the hearing loss. My hearing came back and is perhaps slightly better than it was in March when I had a hearing test. I've been off the steroids for almost a week and have continued with the acupuncture. I'm going 3 times a week (costing me a fortune!), lots of needles on my AN side with as much electricity as I am comfortable with for about 30 minutes. Last week I got a cold from a reduced immune system, thanks to the steroids, and have had a stuffy head (causing pressure in my ears) but my hearing is hanging in there.
From what I understand the AN creates pressure and presses on the cranial nerves. The steroids reduce inflammation, thus reducing pressure. I'm not sure what the acupuncture does, but my acupuncturist is working on the neuroma which she describes as a swollen nerve, to reduce the swelling. The ENT folks say that the tumor is an overgrowth of the schwannoma cells. These cells insulate the nerve, in this case the vestibular nerve (balance nerve)
As per the instructions of the acupuncturists, I have also removed all dairy products from my diet and am keeping sodium, sugar and wheat at a minimum as all of these foods are known to promote inflammation. I 'm also drinking lots of water (thank you Derek). I have also stopped using my cell phone except for on speaker and have stopped using my cordless headset (I've used a headset for over 15years). I've also been instructed to stay away from high altitudes (airplanes) and avoid swimming during treatment. I'm also doing kundalini yoga and avoiding stress.
My plan is to continue the acupuncture until July 14th when I have another MRI. I will have another hearing test in about 10 days to see if my hearing remains stable. Thankfully I have great insurance for the MRIs and hearing tests, I just wish the insurance recognized acupuncture in the same way it sees other medicine. I figure my hearing is a worthy investment!
The steroids were an awful experience for me and made me feel psychotic. I had "wonky head" and felt really, really strange coming off the prednisone. My gut is still suffering. I'm crossing everything that the acupuncture works but it's too early to tell. I will post as I progress...
Oh, one more thing, I drink red wine fairly regularly. I had stopped for a week (trying to be more healthy) when I had the sudden hearing loss. Turns out red wine is an anti-inflammatory and a blood thiner. Two good things for ANs. Cabernet Savignon is my medicine of choice!
C'est moi,
Lisa M
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Hi again Lisa...
Thanks for your good wishes and great to see that you are taking the early initiative in adopting such a positive stance. You have provided some very interesting info and tips relevant to reducing inflamation associated with the AN via giving up dairy products etc in conjunction with your ongoing acupuncture treatment and controlling your stress level with yoga exercises....certainly worth a try! I particularly appreciated your reference to red wine having anti inflamatory properties....and Cabernet Savignon just happens to be one of my favourites too! ;D
Keep us posted with your progress Lisa and best of luck with your forthcoming MRI scan on 14th July.
Best Regards
Derek
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Hi there! We have something in common, Cabernet Savignon. As a matter of fact I used to make it and may start again. Although I did find out more than 1 good glass a day might of made it less benificial. I also take resveratrol in my package of supplements. As far as steroids, I did take them once, 5 day package. I felt like the energizer bunny and it did benift me but was hard to take. Acupuncture sounds good! Also try a good body massage from time to time ecpecially with work around the neck and head area. Best wishes, Mickey
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Hi...
Lisa's recent post in this thread relevant to inflamation associated with ingesting certain foodstuffs prompted me to carry out a little research into what foods are recommended for their anti-inflamatory properties, which of course is of obvious considerable interest to us ANers, and I was more than surprised that I was already using many of them which I would like to think is assisting with my longevity in the W & W mode!
The following are a few of the popular ones highly recommended:-
Tuna and salmon (particularly the wild Alaskan variety)
Grass fed beef
Vegetables - particularly broccoli, cabbage & cauliflower
Salads - dark green lettuce, spinach, tomatoes
Fruit - cherries, apples, strawberries, raspberries, fresh pineapple, blueberries, (interestingly, blueberries apparently assist the brain from aging!)
Nuts - almonds and walnuts
Green Tea - 1 x cup per day
Best Regards
Derek
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Great foods Derek! All have been a big part of my diet +. Have eaten blueberrys everyday going on 4 years! Mickey
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Well Derek, that list of foods lists some of my favorites! Too bad we are long distances from each other... we could have an acoustic neuroma potluck! Cherry juice is supposed the be some kind of magic elixir for inflammation. Mickey what is resveratrol? Sounds familiar and I'm sure I can look it up on the internet but thought maybe you could tell us what it is and why you are taking it. Had my 8th acupuncture session today. I feel really good! As for massage, I'm am past due for one and hope to have on in the next week or so. If nothing else my AN has been a wake up call to take better care of myself. That I intend to do!
C'est moi,
Lisa M
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Hi Lisa! Resveratrol is a substance found especially in red wine which supposedly enhances longevity. According to studys it`s supposed to be good for you but the problem is you would have to drink to much to get enough out the red wine. Thats why they have a supplement so you can get levels needed and you don`t have get "tipsy" every day. haha, Mickey
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Hi Mickey...
Not contained within the list of anti-inflamatory foodstuffs in my recent post was red grapes which I have consumed twice daily on my morning cereal and with my evening sweet / pudding for the past 5 years or so. Thought I would check and see if red grapes have any particular health benefits and would you believe it... they are also high in resveratrol which allegedly also assists in preventing cardiovascular problems and for us chaps...inhibits prostate cancer cell growth!...think I'l double my daily ration!
Regards
Derek
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Hi Derek! Seems to me red grapes are a great alternative from red wine to get more resveratrol plus other benificial nutrients for a healthy lifestyle. Whatever we can find to keep ourselves heathy and keep postin the news! Best wishes, Mickey
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With in excess of 25,000 views since it started in 2007, my sincere thanks to the Executive Director, ANA, for making this thread a'sticky'.
In addition to being a useful reference point, particularly for those newly diagnosed and seeking advice and guidance relevant to 'watch and wait' as a treatment option, the ready access of this thread will also hopefully encourage continued input from others who can provide invaluable contributions.
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I am recently diagnosed but I have noticed that if I do not watch my blood pressure I feel stuffy in the head. This started about last year and the official diagnosis for AN was Jan 3, 2011. The AN sysmptons were present the end of last summer (AUG/SEP). The head feeling diminishes with lower BP readings. I eat lots of fruits and vegetables and also drink 2-4 cups of Hibiscus Tea a day. The tea lowers blood pressure naturally without taking meds. Different studies have shown almost same results between people with high BP taking pills vs drinking the tea. Google Hibiscus Tea and high blood pressure and do not stop taking your meds without your docs input. Its funny but my Dr wanted me to go on BP medicine last year and I decided, with his oversight, to go the natural route, then when I gave him my print out from 6 mos of declining BP readings he did not want to believe the tea had anything to do with it. Maybe it is me but as long as I keep my BP under control the headfullnes is not as bad.
Skip
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Derek
I was just going back over this thread and your rely #4 hit home. Thanks for the tip on using the AN moment for forgetfulness. Now I have a backup to the senior moment, or maybe I will use the AN excuse first.
Skip
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Hi Skip...
Commiserations re your AN diagnosis but just remember you are one in a million - well almost! :) So pleased for you that you found the ANA site and that you have currently opted for 'watch and wait' conservative management.
You make a very valid point re the methodology you adopted in controlling your blood pressure. Whilst I have the greatest respect for the tremendous job our Doctors do, there are those occasions when you have to take the initiative and do what you think is right for you. Upon my diagnosis almost 10 years ago my Dr advised that I should have immediate surgery and as the saying goes, 'the rest is history!'
I had a view of your previous posts Skip and I see that you are a keen motor cyclist and ride a Harley. Great to see that at such an early stage you are in charge of the AN and not the other way around...being a Brit I ride a Triumph Bonneville which I bought 2 years after being diagnosed not having ridden a bike for over 37 years! It was a great confidence booster and my sense of balance is now fortunately on a par with what it was pre-diagnosis. Hang in there with the tinitus, mine was also problematic in the early days but it has now virtually disappeared..I think the motor cycle engine noise won in the end! ;D
Good to hear from you Skip and long may you remain in the 'watch and wait' mode.
Regards
Derek
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Hello Wait & Watch Brigaders!
This Thursday, July 14th, I will have an MRI. Please send all of your diminishing, dissolving, shrinking thoughts my way!
"The" AN (not calling it mine anymore!) was found in my head via MRI April 14th. This 3 month MRI will give me a picture of what is happening in my head now. Fingers crossed I will have positive things to report post MRI!
C'est moi,
Lisa M
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Hi Lisa...
Fingers...toes...and even my eyes ;D are all crossed for your anticipated good news on the 14th!
Best Regards
Derek
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Hi Derek,
Triumph Bonneville is a great choice and a classic at that. My first dealings with a Bonnie was back in 1970. I had a 69 Kawasaki 500cc (H1). A 2 cycle three cylinder that would scream for its day. My friend had a 650 Triumph that could never beat me. He was so mad he went and bought a Triumph Trident, the 750cc triple. I would kick his butt up to about 100mph then he would catch and eventually pass me. I would top out at 120 and he claimed he would go up to 140. Off the line he was no match. Enjoy the summer riding days and be safe.
Lisa, It is the 17th and here is hoping all turned out ok. Keep us posted.
Skip
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OK, I will confess that I was hoping for a miracle. I had this fantasy that the MRI would reveal that the tumor had disappeared and I would shock the medical community with my series of acupuncture treatments and my disciplined diet...
Alas... the AN is still there but unchanged. NO GROWTH. The Dr. said the the tumor is STABLE. I like these words; NO GROWTH & STABLE.
My hearing seemingly also remains stable. So far I have had 3 bouts of hearing loss. The first; last July a year ago. Took nothing for it and hearing returned in 5 to 6 days. 2nd time; May 8th 2011. Took high dose of prednisone with acupuncture hearing returned in 4 to 5 days. 3rd time; June 1st 2011. Felt it coming on, stopped took deep breathes and drank a glass of red wine. Hearing loss lasted less than 2 minutes. I also took mega doses of Tumeric and ginger for several days after and continued acupuncture. Tumeric and ginger are natural anti-inflammatory agents. Really hoping to preserve my hearing!
BTW... I rode a Penton 125 dirt bike in the 70s.
C'est moi,
LisaM
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Hi Lisa...
Any news that indicates 'no growth and stable' is indeed a minor-miracle so congrats and best of luck in your future decision making process.
Never heard of the Penton 125 dirt bike but it sure sounds like fun! :)
Derek
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Hi Lisa - I'm (maybe) the queen of W&W (10 years) but I had to let you know I got a chuckle out of your comment, "I had this fantasy that the MRI would reveal that the tumor had disappeared". As I lay on the MRI table last week, I had the same fantasy!!! I did get the same four words that you did "NO GROWTH & STABLE" along with four other great words "SEE YOU NEXT YEAR"!!
Take care,
Sheryl
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Hi everyone! Just sent in for my 3rd yearly MRI next month and actual 4th year plus W+W. I`m very happy to hear the magic word "stable" from everybody and hoping to continue that trend. As my doctor said at NYU medical center with W+W taking some course of logical action may keep ANs in check. There is also some promising testing going on (mostly with nf2) where someday soon ANs can be treated with oral medicine. Its nice to stay in touch and compare all we are doing which I`m sure has a great effect on our situations. The fantasy of tumor reduction (as in the case of Derek) can be a reality! Best wishes, Mickey
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Healthy living is always good, so all the tips on this thread are positive and make us feel in control. A little, anyway.
But a little voice inside me says "are you kidding? AN aint got nothin' to do with anything you did or are doing." I know friends who eat all the wrong foods, drink like fish, have been smoking since their early teens--and no AN. I'd like to compare my own habits (pretty good) with other AN's, but other than this site I don't know any. You all and I are too rare. I guess that's a good thing-for the millions who are not in our ranks.
I just got my Consumer Reports for the month, and they have an interesting article about various illnesses, things people have used to help themselves, and the efficacy of the treatments. Almost every illness reports a huge discrepancy between prescribed medication and things like meditation, massage, herbal supplements, etc. etc. etc. Prescribed medication wins hands down. I know my husband suffered from depression for years and didn't want medication, so he did all the stuff like St. John's Wort, Transendental Meditation, dietary changes, etc.--nothing worked until he began Zoloft and then there was a seachange and I stopped fantasizing about running away to a place where people had joy in their lives.
So, I guess I'm a big Killjoy for this thread, but I have a feeling that the truth is no matter what we do our little boogers have their own agenda. We can live like monks or *****s and they don't care but will grow or not grow at their whim.
Now I'm going to have another beer.l
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Hi 'sharonov'...
A healthy lifestyle, including alcohol in moderation and the occasional 'junk' treat, is undoubtedly going to improve your overall health and general wellbeing. With regard to whether a healthy lifestyle has any impact on the AN condition?....well you have to have a very positive attitude and lots of self-belief that this is the case otherwise you may as well just give up and await whatever fate allots you. I chose to 'watch & wait' with a very focused and positive attitude, adopted a healthy llifestyle and now approaching 10 years since diagnosis, I firmly believe that I made the right choice.
Best Regards
Derek
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You have a good, positive attitude Derek, and that probably reflects itself in many aspects of your life. My attitude is one of ignoring. I do live a pretty healthy lifestyle (I just finished a beer, so I'm not a total teetoler!) have never smoked, get exercise that fits my aging body (worked with a highly regarded personal trainer and got a pulled hamstring out of it, so now I just walk alot) eat my veggies and often do TM.
And, most of all, I just forget about my little bad guy until it's time for the annual MRI, and try not to mourn my progressive hearing loss excessively.
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A healthy lifestyle, positive outlook are a couple of key ingrediants in a W+W way of life. There is also alot of good guidlines with all the research you can put to use for your own situations. I`m a believer! 4 yrs now with my yearly mri next month. Best wishes, Mickey
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Just read this entire thread - thank you Derek and all for providing such positive advice and energy!
I had my first MRI in June which confirmed what the audiologist suspected from my hearing test in February. My AN is still small and I'm still meeting with various doctors, but my gut response is that W&W is the right choice for me. From February, when the audiologist first informed me of their diagnosis (severe SSD with tinnitus) and their suspicion (AN) until September when I finally met with a neurotologist and neurosurgeon, I went through agonies emotionally.
It was an awful roller-coaster, and I think what made it worse was getting the "dead man walking" look from the various health care professionals I met, combined with this insistence that I was looking at early and urgent neurosurgery. Then I met Drs Rutka and Tymianski and they are urging W&W and I felt this instant relief: finally, I've found health care professionals who are on the same page. There's no pressure to either fight for more time, or push myself to accept surgery that doesn't feel right. Whew!
I walked out of that appointment and told my kids that we have to befriend this tumor and tell it to stay cute and small and cuddly, and it can live with me forever. ;) I try to send it loving energy every day. I am very grateful that my AN took my hearing when it did. If I wasn't already profoundly SSD, I'd be more tempted to opt for surgery. But since I'm already coping pretty well with SSD, I don't have that to fear.
I like your top 10 list Derek - and practice something similar. I figure, even if (worst case scenario), it doesn't have any affect on my AN, at the very least I'm getting myself into the very best possible health and that will be good for coping with and recovering from surgery. So it's good no matter what way you look at it. :)
The things I do in addition to regular exercise and rest, healthy diet, drinking lots of water are:
- I take a turmeric supplement. Turmeric is an anti-inflammatory that's been shown to cross the blood-brain barrier (some oncologists use it for cancerous brain tumors). It also has the ability to induce apoptosis (cell death) in cancer cells. I know my AN is benign, but figure turmeric might have a similar effect on benign tumors.
- I take a greens+ supplement on those days when I don't get enough leafy green vegetables.
- I take an anti-oxidant.
About 6 weeks ago I added acupuncture to the above regimen. I've tried acupuncture before and have found that the best acupuncturists come from the source: are raised and trained in China. My acupuncturist says this is because they get a lot more practice while they are training than acupuncturists who train here in Canada. My acupuncturist has not given me any false promises (like shrinking my tumor or restoring my hearing), which is a thing that definitely counts in his favour in my books.
He's specifically working on: (1) supporting my immune system; (2) helping reduce my allergy symptoms (because all that extra pressure in my cranium is no fun!); (3) increasing blood circulation through my head; and (4) increasing my Qi, or inner energy.
I've noticed a lot of positive benefits since starting acupuncture. I have way more energy - haven't had this much energy in 10 years. I actually vibrate with energy and itch to get exercising, rather than dragging myself through exercise by sheer willpower. My daily headaches are gone. Instead of catching every germ my kids bring home, and being sick longer than anyone else in the family, followed by a bout of asthma, I am getting sick less often and for shorter periods of time. My balance, which seemed pretty wobbly since last Christmas, has greatly improved.
It may not be a cure for my AN, but it has greatly improved my quality of life, and for that reason alone, it's worth it to me.
Gael
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Hi Gael...
Many thanks for your kind comments relevant to the 'Top Tips' thread and for your personal contributions pertaining to supplements / anti-oxidant and the positive health benefits that you have derived from acupuncture which will be of undoubted interest to fellow contributors.
I have perused your posts in other threads and can empathize with the personal matters which you have referred to including having to cope with two young children whilst coming to terms with your recent AN diagnosis. You present as very articulate, patient and determined in your outlook and combined with your obvious good sense of humour you have all the essential elements required for a successful 'watch & wait' journey subject of course to the usual caveat of regular MRI scans and professional medical guidance.
Best Regards
Derek
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Thanks for your words of welcome Derek - I feel right at home here. :)
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Greetings W&W Brigaders.
Happy New Year! I will have my next MRI this month. I'm a little anxious... having increased tinnitus and wonder if it's the "marble" as I call it. Fingers, toes and anything else I can cross that it is at least stable with no growth... and in my wildest dreams SMALLER!
All dreams come true in 2000 on two!
xxoo,
Lisa M
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Hi Lisa...
Hopefully your increased tinnitus is merely attributable to your raised anxiety relevant to the forthcoming MRI scan. We have everything crossed for you and await good news.
Best Regards
Derek
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Hi Lisa! Good luck on your upcoming MRI... As Derek said anxiety plus a whole bunch of other factors can cause your tinnitus to fluctuate. Having mine 30+ years now, (5 years diognosed with AN) I`ve seen so many changes its just a part of me...Wishing you the best, Mickey
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Hi Lisa,
Wishing you all the best for the most desired results of your up and coming MRI. We share your anxiety!!!
Looking forward to hearing from you!!!
Blessings,
Jackie
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Very encouraging thread especially where I noticed that Derek's AN self reduced! That's what I'm aiming for. After reading this same thread for several days I've initiated a healthy living program for myself, taking bits and pieces from several posting. Eat healthy, take vitamins, exercise, drink lots of water and little wine, get lots of sleep. I believe this is going to work! ;)
Karen
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Pinch me... am I dreaming??? Wanted to share my amazing news!
Had my MRI today and was crossing everything that the tumor was at least the same size with no growth. I didn't dare wish for it being smaller.
I was standing in the office discussing my bill with the payments lady when the tall dark and handsome Dr. (Radiologist) came in and said, "Lisa I have to ask you what have you been doing? I'm not supposed to tell you anything but really thought you should know, the tumor looks smaller. I've never seen this before. How did you do it?" I jumped into his arms and cried I love you! ... tears of joy streaming down my face!
I don't know any details regarding size so I'm hoping that this is all true and not some kind of crazy fantasy. I will see my Dr. at House next week for the full report but right now I am elated and beaming!
Love, love love!
Lisa M
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Hi Lisa...
Fantastic news for you...and us! Stability is always great but any indication of a reduction is astonishing. Do let us know all the facts when you get your full report.
Best Regards
Derek
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Good luck, Lisa! Sounds very encouraging. Please keep us all posted on the results.
Karen
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Congratulations, Lisa! Definitely stupendous news! :D
Jim
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Lisa - as a long time W&W patient (10 years), my eyes actually filled up when I read your note as I can absolutely identify with your feelings. Hope things continue on this positive note.
Sheryl
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WOW! This is some great news Lisa... Keep on doing whatever your doing. Very inspirational for everyone involved in our W+W section of living with a AN. Our selection and ideas become more of a great way to tackle our condition. Very happy for you and look forward to the future, Mickey P.S. WOW!
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Finding this thread gave me the courage to wait and watch. I thank you all from my heart. I will see my doctor at House tomorrow and get the full details. Stay tuned...
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Lisa,
What exciting news!!! I'll be waiting anxiously to find out those reduced measurements!!!
Jackie
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OK. Here's the skinny. According to my Dr. at House the AN now measures 1.3 x 1.3 x 1.6 (not sure I have the order right). Last April and July it measured 1.4 x 1.8 x 1.7. When the Dr came into the examination room he said," Good news, the tumor is stable, no growth." I said "That's good news" and he asked me how I was feeling. We chatted a bit and I asked him what the measurements were because I could see he had something written down. He gave me the numbers 1.3 x 1.3 x 1.6 and then I asked him what were the measurements before and he said 1.4 x 1.8 x 1.7. I waited for him to tell me it was smaller but he didn't. All he said was, "These tumors don't get smaller. But it's stable and that's good. We'll do another MRI in 9 months". I didn't have the written report from radiologist and the Dr didn't have it either, so there is still some information missing. Hope to get that next week.
When I was first diagnosed last April the radiologist had measurements at: 2.0 x 1.8 x 1.7. But House measured it at 1.4 x 1.8 x 1.7. I'm waiting to hear what the radiologist's measurements are this time and to also get his "impression" and "findings".
My guess is the Dr. is trying to keep me from getting too excited. As far as I am concerned 1.3 x 1.3 x 1.6 is smaller than 1.4 x 1.8 x 1.7 and I'm going to enjoy this victory! Hooray!
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Lisa I for sure would enjoy that information also. Good for you ;)
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Hi Lisa...
You have a very positive attitude Lisa and that is all important when you are in 'watch & wait'. The fact that the little b***** has not flexed it's muscles is a plus factor and stability is what we all aim for with any degree of reduction being an added bonus. Looking forward to continued good news from you. :)
Best Regards
Derek
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Update from Radiologist... measurements before 18mm x 18mm. Measurements now 13mm x 13mm. Still waiting for complete impressions and findings. From what I can tell there is a 5mm reduction. The next MRI will be in 9 months. Makes me a little nervous to wait so long...
Derek how much time elapsed from when the AN in your head went from 2.5cm to 1.5 cm? Sheryl didn't you have a reduction when you were taking the estrogen suppression drug?
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Hi Lisa...
An apparent reduction of 5mm in 10 months is certainly worthy of celebration and an extremely rare event indeed if you can discount any possibility that the original dimensions upon diagnosis were inaccurately recorded. 5mm is way outside the usual 2mm tolerance allowed for discrepencies due to errors applicable to equipment or interpretation of the images by the neuroradiologist.
With regards to my personal situation, the MRI scan did not indicate any reduction until the 6th year following diagnosis when, coincidentally, a reduction of 5mm was recorded. This was followed by reductions of 3mm and 2mm respectivly in years 7 and 8.
The current dimension of 1.5cm has been stable since then and my 10th annual MRI is due next month when I remain hopeful that there has been no change albeit a further reduction would be very welcome! ;D
Notwithstanding that there is no change in your symptoms etc, and subject to advice and guidance from your specialist, you should be able to continue in W&W until your next MRI scan in 9 months.
Great to see that Sheryl has finally reached her 10 years milestone in W&W...superb result and very inspirational!
Best Regards
Derek
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Greetings Derek,
I'm hoping that the 5mm reduction is the real deal and not an error in the interpretation. For this reason 9 months seems a long time! For the MRIs, I have made sure to go to the same facility, the same machine, with the same technician and Dr for all 3 of my MRIs in the past year. The first 5/14/2011 diagnosed the AN and the second 7/14/2011 stated no change, stable no growth.
I have tinnitus that comes and goes but that's about it in the symptom department. I still hear very well from the AN ear but realize that my hearing could deteriorate. The surgery only gives me a 50/50 chance to save hearing. I'd rather take my chances in Wait and Watch.
Thanks again for starting this thread. It has been a tremendous support. Sending you shrinking vibrations for your MRI next month!
C'est moi,
Lisa M
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Woohoo Lisa M!!!!
Great news, regarding the shrinking of your intruder!!! Those are ideal results that all of us W and W love to hear and aspire to! Congrats,
and keep up whatever you are doing!!!
Jackie
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Hi Lisa and Derek and others - sorry I haven't posted sooner - been enjoying the Florida sunshine for the winter!!!
Lisa - When I was on the estrogen suppression drug (Arimidex), I was stable - unfortunately no reduction. When I went off the Arimidex, I had a 1 mm. increase which isn't really an increase but more likely a "technical" difference.
Ironically, I was going to post as I just had another head MRI but before my yearly scheduled one due in July. I have had a lump in the back right side of my neck (same side as the schwannoma) and it has become more problematic. It was CT scanned and ultrasounded two years ago and felt to be "muscular". I went to another ENT and he felt the same way but said he would order an MRI which would give a more definitive answer - completely up to me - he wasn't concerned. I opted to have it done and he "threw in" the brain-stem tumor too!! Well, the lump still is described as muscular - heat and Advil help but not long term. Will probably have to learn to live with it. The good news is the tumor is still stable at the same size as two years ago with no edema or pressure on the brain stem. I guess if they could go back to my first MRI ten years ago (November, 2001), it would show about 5 mm increase in that time. It was originally measured at 9 mm but I was told it seemed to be under-read and was possibly a tad larger.
I am in the process of obtaining the CD and forwarding it to my regular doc in Boston as I'm sure the July appt. won't be necessary now, and I am hoping I can move it up a year from now or longer. I just worry that as I age, IF this thing grows, I may have other health issues that need to be addressed but for now I am still happy on W&W.
Derek - keep up the race - I'll be glad to stay ahead of you!!
Sheryl
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Great news Sheryl! Hooray for you!
Another question for you... If memory serves me correctly, you do a bit of Transcendental Meditation??? Is this right?
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Hi - Seeing that it is 2:37 a.m., I should be the one doing meditation :o. I do remember seeing a post but do not remember who wrote it.
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Sheryl,
Great news on the no growth!
I was interested to hear you have another lump on the back of your neck, same side. I had a benign tumour in one of my parathyroid glands (removed in 2003), same side as my AN. It was tucked just under my chin - awfully close proximity IYAM. I also have skin tags, moles and a few skin lumps (about 2-3 mm in size) on my body. About 90% of them are on the same side as my AN, mostly clustered along my neck and collar bone. It makes me wonder why they are all clustered in that part of my body.
My acupuncturist (who's also PhD and MD) told me that *all* people have benign/non-cancerous lumps and tumours, usually internally where we can't see them. He says that our bodies are built with a tremendous amount of "back-up" to crucial systems, so these tumours rarely affect any kind of functioning. For example, you can live with only one functional kidney, but we're born with two. So having a lump or two in your kidney's is not going to take away from your health.
It's interesting to think about. Whenever a new mole or skin tag or lump appears, I start off by disliking it and wishing it didn't exist. But eventually I come to accept it, and treat it lovingly, as a natural part of my body. I try to think of my AN in the same way - it's a natural part of me , not some hideous invader.
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Hi all...
Just thought it might be useful to learn what activities or regimes we tend to engage in to hopefully assist in prolonging our precious 'watch and wait' status!
I will start the ball rolling with my 'Top Ten Tips' albeit this is my personal routine and is in no way intended to have any scientific basis with regard to treatment of the AN condition...
1. Annual MRI scan & neuro consultation (regular monitoring is essential..look upon it as part of your routine such as a visit to the dentist or optician)
2. Sensible balanced diet with plenty fresh fruit, veg and oily fish (good for all aspects of keeping healthy)
3. Drink at least 2 litres of water each day (essential part of maintaining good health)
4. Brisk 4 miles daily walk over varied terrain (assists in maintaining good balance)
5. Daily cycling / motor cycling (assists with balance and coordination)
6. No smoking (a MUST for assisting with overall good health)
7. Alcohol in moderation (within acceptible approved guidelines)
8. Complete rest of 10 - 20 minutes during the day with eyes closed and feet raised (Assists in reducing stress)
9. Regular check on ears ( build up of wax can have a marked affect upon hearing impairment...syringing may be required to maintain maximum performance (particularly in the unaffected ear) and per Dr Medbery on the CKPSG 'site, it is a completely safe procedure for those with AN)
10. Engage in a passtime or hobby (keeps the mind off the 'little bugger')
There may well be an element of psychology involved but this regime has certainly worked for me over the 5+ years since diagnosis. My last MRI scan indicated a reduction in the size of my AN and whilst it was only by an insignificant 1mm it was nevertheless a tremendous morale booster and incentive to continue with the 'watch and wait' routine.
Derek
Thank you for that I am now in the W & W mode did have surgery and was left with small tumor (it should not have been left) so that is why the mental part of this is stopping me from so many of your top 10 not only physically but mentally knowing it is still there .. Great advice but yet I do not see any mention of vitamins I started more as a recommendation from another who is on the W&W site and also it has been over 5 years for him as well.
Best Wishes,
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Hi pjb...
My 'Top ten Tips' was started some 5 years ago and has been added to over the ensuing years by various contributors including 'Mickey' who I believe introduced the aspect of vitamins. I personally have never added them into my diet.
Sorry to learn that some of the tumour remained following your excision and it is of course down to the individual as to how we accept that the tumour is an unwelcome inhabitant. Do try and come to terms with your situation and use the 'Top Ten Tips' regime as a foundation to successfully deal with your AN hopefully stabilising it.
Best Regards
Derek
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Hi pjb...
My 'Top ten Tips' was started some 5 years ago and has been added to over the ensuing years by various contributors including 'Mickey' who I believe introduced the aspect of vitamins. I personally have never added them into my diet.
Sorry to learn that some of the tumour remained following your excision and it is of course down to the individual as to how we accept that the tumour is an unwelcome inhabitant. Do try and come to terms with your situation and use the 'Top Ten Tips' regime as a foundation to successfully deal with your AN hopefully stabilising it.
Best Regards
Derek
Derek thank you for your response I will love to follow those top 10 once I can drag my body off the couch so grateful for all these sites such a wealth of information and to know that we are not alone.. I have tried adding some vitamins and just waiting for my upcoming appointment with the doctor should be getting another MRI to see if it has grown..I have been feeling really lousy past few weeks so just praying it is not because of any growth.
Good luck to you with your approach it seems to be working for you and yes for Mickey as well..
Best Wishes
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I have read somewhere that sometimes doctors leave some of the tumor; sometimes it grows, sometimes it does not. Right now, get stronger and try to stay positive. I am trying to do that although with all the noise in my earand fullness in my left head, I worry it is growing and causing the commotion. Occasional dizziness. But I am raking leaves, doing my mom's meds, babysitting the grandkids and then listening to my body and resting when I need to. And reading The Happiness Project (self-help book)
One day at a time! It will get better. Hopefully. Millie
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For whatever it's worth... reading this thread gave me the courage to wait and watch. Thank you Derek for staring it! This past January I was having a lot of tinnitus and fullness in my ear and thought for sure my next MRI would reveal a bigger tumor.
Thankfully I was wrong, the MRI February 1st revealed a reduction in tumor size.
Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.
Be well W&Wers!
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I have read somewhere that sometimes doctors leave some of the tumor; sometimes it grows, sometimes it does not. Right now, get stronger and try to stay positive. I am trying to do that although with all the noise in my earand fullness in my left head, I worry it is growing and causing the commotion. Occasional dizziness. But I am raking leaves, doing my mom's meds, babysitting the grandkids and then listening to my body and resting when I need to. And reading The Happiness Project (self-help book)
One day at a time! It will get better. Hopefully. Millie
Yes Millie surgeons do leave some behind but they tell you I am upset because mine lied and said it was all gone and after the 1 year MRI, I saw something and questioned them that is when they came clean but did not say why, I could have accepted it if they were forthright from day one. Now I went to a new doctor and he said that there was no reason they should have not gotten it all in the location it was so that is why I cannot stress enough to make sure people go with a GREAT team of surgeons and if I can help just one I would be so happy.
Best Wishes,
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For whatever it's worth... reading this thread gave me the courage to wait and watch. Thank you Derek for staring it! This past January I was having a lot of tinnitus and fullness in my ear and thought for sure my next MRI would reveal a bigger tumor.
Thankfully I was wrong, the MRI February 1st revealed a reduction in tumor size.
Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.
Be well W&Wers!
Thank you I am on the reservatrol but never heard of the other 3 have to look into that.
Best Wishes,
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Curcumin, holy basil, reservatrol and honokiol are my favorite supplements/vitamins.
Be well W&Wers!
Ooooo - interesting! I haven't heard of holy basil, reservatrol or honokiol! I'm on turmeric and thought of using curcumin but from what I read it seemed like the two were kind of interchangeable. Off to find out more about the other three... ;)
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Here is my top 12 list (inspired by Derek) for anyone who may be interested:
1. May 2011 - Aggressive acupuncture treatments 3 times per week for 3 months with about 30 needles and as much electricity as I could take.
NOTE: Acupuncture treatments are only as good as your acupuncturist. The acupuncturist I found had successfully treated an infected cyst in the inner ear for a patient and also a neuroma on a woman's foot. I was very disappointed when after 3 months of treatments the tumor had not changed and was the same size but the acupuncture may have had a delayed effect. The acupuncturist had me change my diet (see below).
2. I stopped using any kind of wireless electrical device next to my head, cell phone, ipod, cordless telephone, etc. (I used a cordless headset for over 15 years on the AN side, left)
3. I eliminated all wheat and dairy from my diet last May (2011) and I limited my intake of sodium and sugar to almost none of either substance.
4. I started drinking more water. I try to drink at least 64 ounces per day.
5. I began taking curcumin (concentrated turmeric) . In the beginning I took about 3000 milligrams per day for about 5 days due to sudden hearing loss. Now I take 1000 milligrams per day. For the curcumin to be absorbed properly you need to heat it with fat (olive oil, coconut oil, etc) and black pepper ( I can send links with more info on this if you are interested)
6. I took reservatrol and drank red wine daily for about 6 months
7. I exercised regularly and did kundalini yoga. Kundalini yoga includes a lot of chanting and the vibrations of sound have a very healing effect on the brain and nervous system. Kundalini also includes meditation which is very healing. I do it almost everyday.
8. I took Holy Basil to reduce cortisol levels
9. I had some friends that did prayer circles. I also attended a healing group of Taiwanese healers two times.
10. I stopped calling the tumor "My tumor" and did not take ownership if it. I just called it "the" tumor found in my head.
11. I stopped drinking coffee and started drinking green tea, only one cup per day
12. Started taking (pure) Honokiol 2 capsules per day in January 2012
My theory for the tumor found in my head is that it was the result of stress and a mixture of cortisol, estrogen and adrenaline. The acupuncturist likened it to a swollen nerve. So, the approach was to reduce inflammation (western doctors describe ANs as an overgrowth of schwannoma cells). I think eliminating wheat and dairy had a big role in reducing size. Wheat, dairy and sugar promote inflammation in the body. I recently spoke with a Harvard educated cardiologist who agrees that wheat does strange things to our brains. Wheat is somewhat of a neuro-toxin.
Other things to consider; I had a baby at age 45. A time when my estrogen should have been in decline, it increased tremendously. Now my estrogen is much lower. I mention this because so many women are diagnosed with ANs in their 3rd trimester of pregnancy so I feel estrogen in my case had something to do with the AN.
So many people have surgery and/or radiation only to have these tumors grow back. This suggests that these tumors are caused by something systemic that needs addressing. You need to follow your gut, listen to your body. I was so confused about what to do when first diagnosed. I had medical doctors telling me one thing and alternative doctors telling something else. Three different acupuncturists had 3 different approaches! In July of last year I decided that I needed to follow my own path to healing. I read everything I could find and decided which doctors felt right and which ones didn't.
Best wishes and good health!
Lisa M
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Way to go Lisa! I`m with you on everything said... I`ll incorporate honokoil into the picture, TY. Going into 5th year now and stable and feeling good. W+W dosn`t mean sit back and do nothing but just the opposite of doing all you can to make changes which can help yourself to get and feel better. Best wishes, Mickey
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Love it Lisa! I'm doing some of the same things (acupuncture, turmeric, supplements, changed diet)but won't know if they're working until I get the results of my next MRI (booked for Easter Sunday).
I've been wondering about women's hormones as well. I was breastfeeding my second daughter when I was diagnosed and I've had it in my mind that the human growth hormone women produce for their babies when pregnant and nursing could have an effect on an AN. I am sure stress played a role in it too - adrenaline and cortisol especially - as we'd moved cross-country to be near aging parents, and I'd just cared for my parents as my dad went through open heart surgery. That was the most stressful 2 months of my life - what with driving 3 hrs a day to be with my dad in the hospital and caring for my mother (who has very limited mobility and needs a caretaker), and looking after my own children (who are homeschooled and had to come with me)all at the same time. I remember thinking I was going to break if someone didn't provide me with some support - my hubby had to stay at home (1.5 hrs away) to work and my siblings were 4.5 hrs away occupied with their jobs and kids.
As people have complained with their AN surgery - my parent's friends all magically disappeared during this stressful time. Even my aunts and uncles didn't visit my dad. The lone support I got was from a friend of my parents who lived in the same city where my dad had his surgery - he was so amazing and visited my dad every day and connected with me by phone to make sure we visited at different times of the day so my dad would have someone with him for more hours. I will bless that man till the day I die. :)
I think of my AN differently from you. It is part of me, created by me, and I want to love and accept it in just the same way I love and accept the scars on my body that come from life experiences (like the scar on my neck from my parathyroidectomy that I started off recoiling from and hating, but have grown to accept and direct healing energy toward because it is part of what makes me me). I don't want to think of it as "other" or an alien within me, because then I'm more prone to anger and fear and stressful emotions, and more prone to the idea that I have to wage some kind of war on it. It is part of me and I want to feel positive, nurturing, healing emotions tpward it - it is a part of me that is hurt, but can heal.
Gael
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Woot! Woot! I just got the call from my neurosurgeon's office - the follow-up MRI to see if my little critter is growing showed no change from the diagnostic MRI 9 months ago.
I'm officially on watch and wait. Next MRI will be scheduled for a year from now. I'm relieved and elated and I think it will be a while before this good news truly sinks in! ;D
Gael
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Fantastic news!!! Enjoy your elation... it's good for your brain! So happy for you!
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Hi there Gael...
Great news for you and us...same result at your next MRI scan please! ;D
Regards
Derek
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Hi all...
Thought I would share my own good news...just received confirmation that my recent annual MRI scan result indicates that my AN remains stable after 10 years since diagnosis and that there has been no change throughout the past few years. Hard to believe that I was advised to have 'early' treatment when originally diagnosed in 2002!
Best Regards
Derek
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It's sooooo great to hear that Derek!!! I'm glad for you. Your experience gives me hope for my future relationship with this wee critter. ;)
Gael
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Hi all...
Thought I would share my own good news...just received confirmation that my recent annual MRI scan result indicates that my AN remains stable after 10 years since diagnosis and that there has been no change throughout the past few years. Hard to believe that I was advised to have 'early' treatment when originally diagnosed in 2002!
Best Regards
Derek
That is great news I feel now that I should have waited with a 1 cm but now I am definitely waiting with the 3 mm that was left behind.
Best Wishes,
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Keep the good news coming! You started all of this Derek and I am thrilled to hear that you have good news AGAIN to report. Congratulations!
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WTG! I loooooooooooooooooooooooove good news! ;D
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Great news Derek! Inspiration to keep W+W an important way to tackle AN`S. My 5th year coming up soon and hoping after this MRI I will go every 2 years. Feeling very good... My latest escapade is making red wine (Cabernet Sauvignon, highest in antioxidents) with spring water. It takes a little time but is so easy to do, one nice glass a day. Best wishes, Mickey
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Great news Derek! Inspiration to keep W+W an important way to tackle AN`S. My 5th year coming up soon and hoping after this MRI I will go every 2 years. Feeling very good... My latest escapade is making red wine (Cabernet Sauvignon, highest in antioxidents) with spring water. It takes a little time but is so easy to do, one nice glass a day. Best wishes, Mickey
Hi, Mickey I am rushing a year I am telling everyone almost 6...haha.... but 5th is just as GREAT !!
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This discussion forum needs a "like" button - I'm reading so many posts on this thread that I like and want to give a big thumbs up to!
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Derek,
How did you self reduce from 2.5 cm to 1.5?
New member (left 1.5 cm)
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Derek,
How did you self reduce from 2.5 cm to 1.5?
New member (left 1.5 cm)
Hi 'rland'...
I refer you to my post dated February 10th in this thread re the circumstances pertaining to the apparent reduction in the size of my AN. As to the reason?...given that the dimensions were, hopefully, correctly recorded upon diagnosis, then I can only speculate that the 1.5cm reduction is down to rigid adherence to my 'Top Tips' regime, a sensible diet and of course an element of good luck! ;)
Best Regards
Derek
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Well put Derek! To all in the W+W mode there is alot of substance in "Tips for W+W Brigade" created by Derek. It has been very benificial to me going into my 5th year and showing alot of improvement. Once you get involved you can include your own imput of things you can do which may be helpful. My AN has remained "stable" but anything is possible hearing at least a few people doing the same sort of things which have had reductions. Best wishes, Mickey
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Hi all...
Thought I would share my own good news...just received confirmation that my recent annual MRI scan result indicates that my AN remains stable after 10 years since diagnosis and that there has been no change throughout the past few years. Hard to believe that I was advised to have 'early' treatment when originally diagnosed in 2002!
Some further good news 18th June...
As previously mentioned, my recent MRI scan report indicated no significant change in the past 12 months. However my consultant has just informed me that there is a definite further reduction of about 2mm in the AN dimensions over this period. This is particularly pleasing as the last indication of any reduction was over 2 years ago so hopefully this very welcome new trend will continue :)
Regards
Derek
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Great news Derek! Your the 2nd person I spoke to this week who mentioned reduction while W+w. Mickey
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OMG - where have I been since you posted this a few months ago?? I guess I am keeping ahead of you from being diagnosed in 2001. May the race continue and CONGRATULATIONS. We can become poster gal and guy for the others in W&W.
Stay well,
Sheryl
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Derek great news and hoping it continues to shrink.....
Best Wishes,
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Something told me to stop by the W&W Brigade tonight... Excellent news Derek! May we all follow in your footsteps... while going on a daily walk as prescribed n your Top Tips For The 'Watch & Wait' Brigade! Here's to your health!
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Cheers to the poster boy and gal for W&W!! The kind of news that makes my day!
Gael
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Thanks for your collective encouraging comments which are greatly appreciated.
Regards
Derek
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Great news Derek,
We all who are a part of the W and W brigade, toast a hearty congratulations to your regimen results! It's 5 and a half years for me, hopefully I will show some reduction on my next one too! I am very pleased with stability!!!
May your Blessings continue, and to all ANer's the same!!!
Jackie
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Great news, Derek. Thanks for the advice, the inspiration, the hope. Millie
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Greetings Fellow W&W Brigaders...
Wanted to share my exciting news...
I had my follow up MRI from my February 12th, 2012 MRI last week. The AN continues to shrink! Here are the VERY detailed measurements and report:
April 2011 = 2.0cm x 1.8cm x 1.7cm (diagnosis measurements)
11/28/12 Report: " Once again seen is an extraaxial mass with avid enhancement in the left cerebellopontine angle with extension into the internal auditory canal, causing widening of the IAC. However, there has been definite interval decrease in the size of the tumor.
Ten consecutive measurements were taken on the 3D Fiesta images starting at the most caudal portion of the root entry zone of the trigeminal nerve. Ten consecutive measurements were done in the two dimensions (anteroposterior and transverse).
February 12 2012 = 10 x 6mm, 11 x 8mm, 11 x 8mm, 11 x 8mm. 12 x 12mm 13 x 13mm, 13 x 14mm, 13 x13mm, 13 x 14mm, 13 x13mm
November 28 2012 = 4 x 3mm, 5 x 3mm, 5 x 7mm, 6 x 8mm, 7 x 10mm, 6 x 11mm, 8 x 11mm, 9 x 11mm, 9 x 11mm, 9 x 12mm
Radiologist took very detailed measurements to be sure of the reduction and is now measuring in mm, not cm. Most every measurement is less than a centimeter! I've had each MRI done in the same place, same technician, same machine, same radiologist.
Though I'm experiencing some pretty loud tinnitus tonight (probably from my 6 year old screaming with excitement about getting Christmas tree) I am SO HAPPY! I send you all shrinking thoughts!
xxoo,
Lisa M
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Lisa... Just what we all want to hear, many congrats on your fantastic news and looking forward to continued shrinkage for you. Great Christmas present eh?...happy hols.
Best Regards
Derek
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Great news, Lisa!
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Congratulations, Lisa! :)
Jim
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Way to go Lisa! This W+W journey of ours has been filled with many ups and downs. It`s really nice to here an up like youv`e had recently. Lets keep the faith of the W+W brigade with hopefully the best yet to come... Congrats! Best wishes, Mickey
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Loving to hear your great news of continued SHRINKAGE!!!! May those results continue for you and give Hope to others!!!
Jackie, finishing up my 6th year of W and W!!!
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It's not too late to make a New Year resolution to make sure you look after your 'good' ear particularly so if you have single sided hearing loss...here are some simplistic tips worthy of adopting:-
Prevent accidental damage
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Never place any object into the ear in order to clean re danger of rupturing the eardrum..only insert your elbow ;D
Prevent noise trauma
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Normal conversation is about 60 decibels. Exposure to noise making it difficult to hear a normal conversation means the level is around 90 decibels. Frequent exposure to this level can result in hearing loss. Avoid excessive noisy environments and use approved hearing protectors whenever applicable
Bacterial infection
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Commonly caused by water retention after swimming or showering etc...always 'shake out' excess water
Regular exercise
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Maintaining physical fitness will not only make you feel good but assists in fortifying the delicate hair cells in the inner ear essential to retaining hearing ability
Wax
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Whilst wax is essential to good ear health and any excess usually sheds naturally via the outer ear, occasionally a build up of wax can greatly impede hearing ability. A visit to the GP or GP practice nurse will verify if syringing or ear drops are required. Never use drops without prior medical examination and advice re frequency of administering etc.
Remember if you only have one fully functional ear you had better look after it... neglect it at your peril! :o
Best Regards
Derek
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wow, reading this is really encouraging! I am trying to walk more (pushing my kids in their stroller)!
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derek, you were saying somewhere else you have a specific diet you follow. Where is the info on this if you don't mind saying? tia!
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derek, you were saying somewhere else you have a specific diet you follow. Where is the info on this if you don't mind saying? tia!
Hi Stepphers...
My general diet is really nothing more than an awareness of healthy eating and corresponding lifestyle. Plenty of fresh fruit / vegetables and oily fish - reduce intake of red meat / salt / sugar / saturated fats / junk food - drink plenty of water - moderate alcohol consumption - no smoking - take regular daily exercise and a few minutes each day completely relaxing with eyes closed and feet up...and that, combined with an 8 hours undisturbed night's sleep, just about does it for me!
Our good 'Brigade' friend Mickey also favours taking vitamin supplements and I am sure he will advise of his personal preferences.
Best regards
Derek
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Derek! Thank you! I am so happy for you! ;D
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I`m writing this down on our W+W forum but I`m sure it may be able to help all those with an AN treated or not in the future especially those with NF2`s. Anyhow, I went to a great NYC meeting (6-8-13) with Dr. Roland from NYU giving his presentation. He went over alot and what amazed my most was him and NYU seeming to be on the forfront of working with technology to help AN`s with medicines. The 3 medicnes primarily in trails now were Bevacuzumab, Lapatinib,+Avistan. All I want to do is put this out there for everyones research keeping on top of our AN future. You can t thank Dr. Roland + crew for working so hard..... Best wishes, Mickey
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Thanks Mickey!
And don't forget Honopure (pure honokiol extract)... you don't need a prescription. Here's link to a paper that discusses honokiol and ANs (aka Vestibular Schwanommas VS):
http://www.ncbi.nlm.nih.gov/pubmed/22057812
Excerpt:
CONCLUSIONS:
Honokiol, a low molecular weight natural product, inhibits cell proliferation and promotes apoptosis in schwannoma cells by targeting the ERK pathway. Our data suggest that honokiol can be evaluated as a chemotherapeutic agent for VS.
Sending you all shrinking vibes!
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Thanks Mickey. I was offered to be a part of the Avastin trial, but after researching the horrible side effects, decided to go with radio surgery for the AN and conventional craniotomy for one of the meningiomas. (The others will stay put for now) Perhaps for those with NF2 who have more tumors, the risk/benefit ratio would be more acceptable. I am grateful for the research and those who are willing to take part in the clinical trials, and for you sharing the information!
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TY Lisa and Nannybee.... Honokiol! Everyone out there remember this one... Read the research that Lisa put out there.. I also have been using pine bark extract from Europe which got some good reports??? I`ll be taken my now 2 year mri soon. Feel good + got my fingers crossed. Best Wishes, Mickey
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Lisa - great abstract - thanks for posting. Are you taking Honopure. Your shrinkage is impressive.
Sheryl
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Hey Cheryl! Yes I'm taking honopure. Started taking it in January 2012 taking 2 capsules (with food very important). Now I take 3 each night before bed. Next MRI is in November. I think the daily meditation with mantra is a big help too. And... I have made it a point to reduce/avoid stress. Stress is still around but I'm dealing with it differently. I've been watching Gabor Mate on youtube. He talks about stress and its impact on our health. Here's a link to one of his talks: http://www.youtube.com/watch?v=Qf92l7FPyKo He is an amazing speaker. I just love what he has to say!
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Hey Lisa! Just ordered another 120 bottle of honopure! Cost alot but as they say you get what you pay for... Mickey
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Yes... honopure is pricey, but if you buy it by the case it gets a bit cheaper. Hopefully in time the price will come down as honokiol extract becomes more available.
I do think honopure is helping but the other things that Derek is doing, that started this thread; drinking plenty of water, eating a healthful diet, taking a rest/mediating each day, singing (or meditating with mantra) and regular exercise are working too. Being happy, having people that you love in your life, doing things that you enjoy and keeping stress manageable, all these things are very important to those of us in the wait and watch brigade.
I am so thankful to have found this thread. It gave me the courage to try waiting and watching. And I'm still waitin and watchin!
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Well its that time again! Scheduled a MRI for Wed Jun 26. Its almost 2 years now and I`m trying something a little different. Its a stand up MRI (actually sit down) lol. No contrast... I`m trying to make it easy on myself. I`m feeling very good, and if there is nothing too much out of the ordinary I`ll do the same again in 2 years. Thinking positive and saying my prayers, Best wishes, Mickey (6 yrs W+W)
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Mickey ~
Best of luck on Wednesday! :)
Jim
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Best wishes for another positive result for you on Wednesday Mickey...you deserve it! :)
Regards
Derek
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Best wishes for good news on Wednesday! And... for trying something different!
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Thanks for your well wishes! I went for my MRI in the new stand up, sit down MRI machine. Took about 35 minutes in a seated position with a open head frame adjusted to my head while watching the Yankee game on TV... lol. +no dye! Although it did make those crazy noises while your must sit still, a pleasant suprise! Well next I`ll call for my results next week and hope the pictures will come back clear enough and stable for my doctor... Feeling good and got my fingers crossed, Best wishes, Mickey
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Today, received some additional positive news which will be of interest and encouragement to fellow 'wait & watchers' and to those contemplating 'W & W' as a viable treatment option.
You may recall that my recent MRI scan indicated a further reduction in the size of the tumour at 11 years since diagnosis in 2002. I have just had some correspondence from my consultant who is monitoring my condition as a potential GK patient. Interestingly he states that the overall shrinkage of the AN has been particularly noticeable over the past 3 years (years 8 to 11) and considers this to be a "rare finding" and recommends that my annual MRI scans can now safely be increased to every 2 years. I value his professionalism and guidance and will carefully consider his advice.
This has reinforced my personal belief that my original decision to 'W & W' is vindicated whereby if there is no increase in tumour size and no escalation of symptoms, not to embark upon unnecessary medical intervention with attendant risks of morbidity. This together with maintaining a healthy diet and active lifestyle have been a successful strategy that I totally commend to others so diagnosed notwithstanding the usual caveat of regular MRI scans and acting upon the advice and guidance of a consultant in whom you have total trust.
Whilst acknowledging the consultant's comment that the shrinkage of my tumour is a "rare finding" I personally believe that this, in the main, is due to a relatively small percentage of those diagnosed with the condition opting for long term commitment to conservative management.
Regards
Derek
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Way to go Derek! You have been very helpful in my journey with AN. I have been following your footsteps And every once in a while taking a few on my own to achieve our goals W+W. Hopfully this can be helpful to others who read posts on W+W Brigade to maybe find a good solution without doing any harm. Thankyou, Mickey
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Hi W+W buddies! Well I got my results from Jun. 26 MRI... A lesion measuring 5mm in diameter and 13mm in length. Last MRI 2yrs. approx. 6mm X 1.2mm, sounds to me at least "stable". Have to remember this MRI was done in a new machine. All other news in report good! Well all in all feeling good, I`m gonna celibrate this 4th of July weekend... God bless my AN friends, Best wishes, Mickey P.S. next MRI 2years.
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Great news for you and for us Mickey ;D...and just reward for your perseverance and commitment to W & W. Keep up the good work and enjoy your celebrations.
Best Wishes
Derek
P.S. I trust the 1.2mm was a 'typo' lol :o
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Great news Mickey - nice to have lots of company in the W&W brigade. Going for my yearly MRI with hubby (who also has a brain tumor - meningioma) on July 24th. Luckily the hospital has three MRI machines and we can be done at the same time and then see the doctor for results - AHH togetherness!!!
We were told that you don't need a different machine, hospital, or technician, that you can get "technical" differences even on the same equipment, etc.
Sheryl
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Hi Sheryl...
Very best wishes to you both on the 24th and looking forward to some more great news from you! :)
Best Regards
Derek
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Hi Sheryl! TY... Looking for good results for you and your hubby... My wife goes around the same time as me also. Couples who MRI together stay together! lol Best wishes, Mickey
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Congrats to Derek & Mickey on your great news! Sheryl... fingers crossed for good news with your MRIs on the 24th! Sending you small, shrinking thoughts!
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Hi everyone in Watch and Wait and all of you Aner's who have had intervention, just want to congratulate Mickey, Derek and Lisa for their great MRI results!! So very happy for you and I hope that great news continues far into the future! Keep up the good work!
Sheryl, good-luck to you and hubby on your MRI's.
Sorry this is late but I haven't been on the forum for awile! Believe it or not I kinda forgot about mine! Hahahahaha NOT!
Blessings to all,
Jackie
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Ok... I've had a momentary setback... Two weeks ago I was swimming with my daughter. She accidentally shot water from a squirt bottle straight into the AN ear. Then I was diving underwater, going to the bottom of the deep end when I felt a great deal of pressure in my head. I panicked and quickly went up to the surface. That night at about 9:30 I had an attack of sudden hearing loss with that very full feeling in my ear. The next morning I went to House first thing. They cleaned my ear of some wax and wrote a prescription for steroids. Steroids make me feel psychotic so I really didn't want to take them. I went to my acupuncturist and I went to another ENT Dr. Both western medicine docs prescribed steroids and also an antibiotic. And they related that the swimming incident was of no significance (I disagree with this). I did three acupuncture treatments and decided not to do the steroids. This I felt was very risky and I really hoped that I was making the right choice. Thankfully my hearing returned after a few days. The ear has continued to feel a bit raw and very sensitive. The ENT doc told me that I had a great deal of inflammation in the ear nose throat area. In early June I got some sort of upper respiratory bug from my daughter that has left me with a bit of congestion that is hanging on... this is most likely the source of inflammation or perhaps an allergy. Still looking into this.
The acupuncturist told me to rest and take it easy explaining that we all have inflammation but our bodies repair this inflammation while we sleep. When this attack happened I had also just returned from a stressful and exhausting 12 day trip and was sleep deprived. Another symptom of concern was a twitch on my lip and chin, also on the AN side. Hoping everything returns to normal soon. I am humbled.
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Hi Lisa...
My rational response and being totally objective, is to analyse the salient antecedent facts pertaining to your current situation. Firstly you apparently contracted a respiratory virus only a few weeks ago which is still dominant and which has been confirmed by an ENT specialist as inflammation in your ear nose and throat tracts. It is possible that the inflammation has been aggravated whilst swimming / diving and further exacerbated via the pressure of the water entering your ear as a result of the incident with your daughter's squirt bottle thus causing your temporary hearing loss which fortunately has now returned. Lastly and by no means least, I do believe that your recent exhausting 12 day trip and sleep deprivation has added to your stress which could well be the underlying cause of the twitching to your lip and chin. It is well documented that undue stress can result in such inadvertent twitching. Albeit I am not medically qualified Lisa, my take on the facts as you describe lead me to believe that your symptoms are not related to your AN.
Hopefully a course of anti-inflammatory medication will sort that problem and an early MRI scan should put your mind at rest that all is well and that you can get back to 'normal' and continue in W & W :)
Do keep us updated.
Best Regards
Derek
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Hi Lisa! Sorry to hear of your temporary setback. These ears of ours are very sensitive. I`m very careful to most things I do because I feel having this AN makes me more apt to have problems with them. I use ear plugs and cotton when ever I think necessary (noise water etc.). Pamper them with nice music, learned thru nueromnics sessions and actually soothes them. Put a heating pad around neck shoulders and ears also. I`m sure that with your healthy lifestyle, time will heal your back to normal... Wishing you the best, Mickey
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Greetings alll... I am happy to report that my hearing has come back. Hallelujah! It is possible that the temporary hearing issue had nothing to do with the AN but there is no real way to know. I've picked up a new symptom of dizziness which may or may not be AN related. The dizziness occurs mostly in the morning when I go from a prone to upright position. My next MRI is in November. Derek and Mickey thanks for the support. Sorry for the long pause in responding. I feel good and optimistic once again with my wait and watch status. May the ANs get smaller and smaller... but slowly so the nerves don't shift and cause new problems. Blessings to my fellow wait and watch brigaders! Fingers crossed for good news in November.
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Hi Lisa...
Good to know that your hearing has returned and that you are back in good spirits on the 'watch & wait' track. Hopefully your recent episodes of dizziness are not AN related and that you get some great news from your forthcoming MRI scan in November. Do keep us posted Lisa.
Best Wishes
Derek
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Thanks Derek!
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Hi! I am a new member. I found out I have an AN that is small, not quite a centimeter. I started having balance issues and dizziness along with ear pressure and some pain. I noticed my hearing in my left ear was affected and had some ringing in the ear. I had an MRI and went to see a specialist at Shands in Gainesville. Luckily, he said I could wait and watch and have another MRI in a years time. I have so many questions so that's why I thought I should join the forum. I have read so many stories about AN's and it's very frightning to me. I have been noticing some little things going on and wondering if anyone else has these, such as a funny taste in their mouth. I have noticed this for many months before I even had other symptoms. Has anyone had hair loss? I am just wondering. Maybe these things don't have anything to do with AN's. It is so stressful but I am trying hard to be positive. I would appreciate your thoughts.
Thanks alot! :) MG
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Hi, MG ~
Welcome to the ANA discussion forums. Although its counter-intuitive, small ANs are often the most problematic. Because the AN impacts other vital nerves that affect taste, swallowing and of course, balance and hearing. Prior to my diagnosis for a large (4.5 cm) tumor, I lost my sense of taste and with it, my appetite and 35 (unneeded) pounds. My sense of taste returned immediately following a partial resection of the AN (followed by radiation).
To the best of my knowledge - I'm not a doctor - an acoustic neuroma will not precipitate hair loss. Genes are the major factor in hair loss but stress can also have a role. Your doctor may have more information on this issue.
Many of our Florida members have been treated at Shands in Gainsville and I'm sure they'll be responding to your post.
Jim
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Hi MG...
A very warm welcome to the Forum following your recent diagnosis. I personally have never read of any hair loss problems associated to acoustic neuromas albeit other symptoms such as you have described and others, are all fairly typical both pre and early post diagnosis. The size of the tumour and consequent symptoms can vary between patients as can the location of the AN which can have a significant bearing.
My AN was 2.5cm upon diagnosis over 11 years ago and following extensive research I decided to 'watch & wait', a decision I have never had any regrets about, and throughout the ensuing years all of my pre-existing symptoms including balance problems and tinnitus have abated plus my AN has reduced in diameter to 1.3cm albeit I do have single sided hearing loss which is of no problem to me.
Your AN is fortunately small and being a condition whereby the tumour is benign and slow growing you do have time to carry out thorough research of all available treatment options before making your ultimate decision. On the plus side you do appear to have a consultant who is not rushing you into any form of intervention and in my opinion is correctly advising that you carry on with conservative management ('watch & wait') and have another MRI scan in a years time. If your next MRI scan indicates any degree of growth in excess of 2mm or you have increased symptoms then that is the time to act as there are no cast iron guarantees that earlier intervention is the panacea to an ultimate successful outcome including the preservation of hearing on the affected side.
All of the available treatment options are not without some degree of risk but for me 'wait & watch' was the correct decision
and carried the least risk of future complications post treatment.
Very best of luck with whatever decision you ultimately make but with maximum research, regular MRI scans and guidance / advice from a consultant in whom you have complete trust, you WILL make the choice that is the right one for you.
Best Regards
Derek
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Greetings MG.
You have found a wonderful place to help you through the AN journey. Everyone's journey is a little different but you will find all kinds of support and feedback here. This forum was a life raft for me when first diagnosed in April of 2011 with a 2cm AN. I was terrified at first, but slowly gathered information and that terror reduced greatly. This particular thread gave me the courage to wait and watch which was the right path for me... so far. The area in which ANs take root is a pretty tight spot in the head and there is a huge junction of cranial nerves in that tight spot. These nerves are very sensitive. The slightest change in pressure is what causes all these varying symptoms: hearing loss, balance issues, changes in taste, etc.
Don't think ANs have anything to do with hair loss but as Jim said stress will make your hair fall out. I truly believe that stress helped create and grow the AN found in my head. I have done a huge overhaul of my life and brought my stress levels way down. I'm 2 1/2 years into my journey, you've just started yours. Take a big breath. If one must have a tumor, this is a good one to have. I look at the 2011 diagnosis as a wake up call to get serious about taking care of myself. Take care of yourself!
C'est moi
Lisa M
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Hi Lisa! Thanks for your encouragement. I really want to try to keep positive about this. Everyday I am reminded of it though, with constant ringing in my ear and pressure. I just want to forget about it and go on with my life. How do you do it? Any advice? I do pray alot and that always seems to help! :)
I hope all is well with you and thanks again!
Take care, MG
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Sorry for the delay in responding... I am a single mother to a 6 year old and time is scarce! Derek's top ten list in this thread is a great place to get going in taking better care of yourself. Drinking enough water is the probably the easiest and best thing you can for your body. Hearing the words BRAIN TUMOR is very scary but use that energy to pull yourself up by the bootstraps and set an intention for yourself to change things in your life for the better.
BTW... Silence is an enemy to tinnitus. Avoid being in silence as it aggravates tinnitus. I sleep with a white noise machine. Avoid places with loud noises. If you must be in a place that is loud, put cotton in your ear (I prefer cotton to actual earplugs).... again I will mention that I have a 6 year old and she can get pretty loud. My AN ear rings for days sometimes if I don't protect it from loud noises. As I was going into a haunted house with my daughter last weekend, I grabbed some faux spiderweb and stuffed it in my ear for protection... without it I would have suffered ringing for at least a few days. Thanks Mickey for reminding me of how sensitive our AN ears are awhile back!
I get dizzy sporadically but my yoga practice helps keep that in check.
You pray, I meditate. They are really close to being the same thing. I use mantra (aka chanting) while meditating. The vibration of sound is very healing. Here's a link to a beautiful healing mantra:
http://www.youtube.com/watch?v=w9OCEfi4Lv0
You can just sit and listen to it... and then try chanting it and feel the vibrations in your head. It may seem insignificant but I really believe it helps. If nothing else it's very relaxing and can help with lowering stress levels.
Get yourself some Tulsi (holy basil) tea and drink it daily, also a great stress reducer. Hang in there. It gets easier and less daunting.
best of health to you!
Lisa M
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Hi Lisa,
I am just getting back to the forum as I take care of my 88 year old mother who is wheel chair bound and has Hospice coming. I live with her and it is usually very quiet around here so I do hear the ringing constantly. I do sleep with a fan going and that helps some. I have noticed lately that going into crowded places is so distressing to me. I can't enjoy having dinner with my boyfriend because of the background noise. I have tried ear plugs but I really don't like them. I will try your suggestion and use cotton. I use ear plugs when I blow dry my hair and vacuum. It helps! I liked the faux spiderweb story! ;D
Thanks for the tip on meditating. I will give it a try. I guess I should look for the holy basil tea at a health food store.
Thanks again and take care,
MG
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Lisa,
Thank you for posting that link!
I know that music can heal, and thoughts created while listening to particular types of music are powerful. I am so grateful that you posted that youtube link. And your reduction of your tumor is impressive! No one can know if meditation and tumor reduction are related, but heck... I sure don't see how the meditation and chanting can hurt. So, I will put my mind to believing it can help. Why not?
I just bought a pair of Bose noise canceling headphones and am going to melt in to the world of that chant you posted. It's beautiful!
Thanks again,
Cathy
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Male 25 years old, diagnosed 6 months ago.
Vestibular scwhannoma on the left side, at least 24mm in its biggest dimension. No symptoms other than slight hearing loss and hardly noticable lip asymmetry.
Initial reaction was to get it removed immediately, but then cancelled the surgery. Odds are against me. Cant cope with the idea of deafness. Only 30% success rate statistically. Very depressed.
Stopped smoking and started antiangiogenic diet. Hoping that it wont grow for a couple of years. I havent even lived my life. Im sad.
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Greetings, Logitech23. Don't despair! Take it from me--43 year old male who was diagnosed with AN last September; lost right-side hearing during AN surgery last December. I tried surgery when I did to try to preserve what was left of my hearing (50% maybe?) It didn't work out and I became SSD. One year later it is still far from "normal" but every day I think my brain is adjusting more and more and the SSD is more an annoyance than something that depresses me. I use a Cros hearing aid (and no--they're not just for old farts)--far from perfect but very helpful in quieter settings. Life goes on and you just roll with the punches. Just think about all the money you're saving already by not having to purchase an expensive surround-sound system for your apartment/house!
Take care.
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Hi logitech23..
That is rotten luck to get such a diagnosis at your young age but you must stay focused and optimistic as you commence your research into the available treatment options. My AN was 2.5cm when diagnosed almost 12 years ago but I was then 58 years of age and it was an easy decision for me to opt for conservative management (aka watch & wait). Fortunately it was the right one for me as my AN has actually self-reduced over the ensuing years to the current 1.3cm so there is always hope if you remain positive in your outlook.
My advice is to carry out thorough research into the available treatment options and ensure that you have a consultant who is an expert in the treatment of ANs and whose advice and guidance you can completely trust. The size of your AN is getting towards the maximum for the stereotactic radiosurgery treatment option so in your particular case, albeit these tumours are normally slow growing, if you were considering that option, you will possibly need to decide more quickly than is the norm.
You will rapidly learn to accept your diagnosis and adapt accordingly but be assured that this benign health issue is a nuisance that you will eventually successfully overcome. Be assured that myself and the many other knowledgeable folk on this Forum are always here and available to respond to the many issues and concerns that you will inevitably raise during your AN journey.
Best Regards
Derek
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Thank you for your kind words and support.
Theres no radiosurgery treatment option where I live. So my options are either to have it microsurgically removed or to observe its growth. I decided for the latter course, because I want to be certain that its growing. After all I have read that in some cases the tumor stays stable for a couple of years. I don't mind having it "there", because it doesnt cause me any major problems (yet)
Derek your journey has been inspirational. I didn't even know that AN could shrink on its own. I can imagine the joy you had inside when you got your MRI results. That must have been something wonderful.
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Hi logitech! I`m sorry to hear of your AN.. I also have a AN going on 7 years W+W with approx. a 12x.06 diminsion which has held stable. Got diognosed at 58 yrs. but am not sure how long this AN has been with me over the years before. In any case I did take a pro active healthy way of living when I made my decision to W+W. Please look over all the info out there while you W+W. I feel even better than I did when diognosed by doing so. Wishing you the best, Mickey
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'logitech23'...
Many thanks for your kind comments. In the hopefully unlikely event that you do ultimately require an invasive treatment option I would certainly explore every avenue relevant to radiosurgery albeit there may not be a facility in your immediate vicinity. I admire your early decision to opt for conservative management and your mature acceptance of your situation. Just ensure that you obtain regular MRI scans of at least annual duration and be aware of any escalation of symptoms which should be brought to the early attention of your consultant for advice and guidance.
Meanwhile stay positive in mind and ensure that you maintain a healthy diet and exercise regularly to ensure a good standard of fitness.
Regards
Derek
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As we approach the festive season of parties and social activities often associated with excessive noisy environments I think it is timely to remind ourselves that we must make a conscious effort to protect the hearing in our 'good' ear particularly so if hearing loss is total on the affected side.
Be aware that there are approximately 15000 special hair hearing cells in the inner ear which we gradually lose during the natural aging process from our twenties onwards. They are very delicate and can be damaged by diseases, loud noise and certain medicines. Once lost they cannot be reproduced and some 30% of cells can be lost before there is any discernible hearing loss.
In furtherance of protecting what we already have, the following tips are worthy of implementing:-
1) Reduce the amount of time exposed to loud noise
2) Don't stand too close to the noise source and stand away from speakers
3) Wear appropriate ear plugs / mufflers whenever possible particularly when using power tools and when attending loud concerts and other entertainment venues
4) Take regular breaks from loud noise of at least 10 minutes duration every hour
5) After noise exposure remain in a quiet environment and allow ears to recover for up to 16 hours
6) Apply a couple of drops (or spray application) of specialised ear care olive oil into each ear once per week to prevent the accumulation of excessive ear wax which can reduce hearing ability to a remarkable degree.
Happy hols all!
Derek
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Good looking out Derek! TY. If you have AN no matter what your treatment decision is, stay pro active ... Happy Holidays all, Mickey
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Thanks for this Derek. Interesting fact about the hair cells. What an amazing design our bodies have. I've always wondered if those little hair cells get damaged during radiation and this is what leads to delayed hearing loss with this type of AN treatment. I imagine those little hairs help our balance too!
Derek, if I remember correctly, isn't singing on your original top ten list??? Singing has amazing healing properties. So... get out there and sing this holiday season!
Happy holidays to all and the most excellent of health.
Lisa M
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Hi there Lisa M...
Yes...singing has been included as a 'top tip' and you are correct about the many physical and psychological health benefits. Being an aerobic activity that increases oxygenation in the blood stream it exercises major muscle groups within the upper body including the heart. Singing also reduces stress and produces a sense of emotional wellbeing especially when performed in a group when it increases a sense of community, belonging and shared endeavour. I can unreservedly recommend it irrespective, like me, you only have one fully functioning ear! Fancy a duet Lisa ;D
Best Regards
Derek
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WOW - just realized this thread was started 6-1/2 years ago!! Thank you Derek.
Hope everyone has a happy and HEALTHY holiday season including a wonderful 2014.
Sheryl
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Singing is good? That's great news! ;D I sing a long with"You Tube" songs and have a good time doing it. With my little bit of hearing loss I am not sure I'm in tune but who the heck cares! Thanks Derek for the heads up.
Happy Holidays to everyone !
MG :)
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HAPPY NEW YEAR! Going into my 7th year W+W now and doing very good....Wishing my AN family the best! Mickey
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I am finally going to add this as my tips….
Staying hydrated
Weekly 90 min massages, with focus on facial muscles and circulation - started in January 2012 - note my MRI results….
BiMonthly Raindrop Massage - can be controversial but I have not had any issues with it - started in January 2012 - did monthly ones before my MRI Results in mid 2012
Helichrysum essential oil - inhale periodically, sometimes put behind the ear
Frankincense essential oil - inhale periodically, sometimes put behind ear
**Don't go crazy using essential oils, use them with caution. I am not a doctor or a medical professional. All I know is - my AN has shrunk. My MRIs have been done in a 3T machine read by the same person. The darn thing went from under at 2MM to over a 2MM (this was in four month period in 2011) then down to 2MM (in July 2012) to under at 2MM (in July 2013).
I can't prove a darn thing. All I know is that I am feeling better, my visual problems have gotten better etc. Maybe some of it was anxiety..but I know it wasn't all anxiety.
My next MRI is July 2014.
The brand of essential oils that I use is Young Living (I just add this here since someone may ask). I am a "distributor" BUT only for my own personal use (I wanted to get the discount). So please do not contact me in terms of getting oils, that is not my purpose at all. You can go to their website or research oils on your own. Just again - be cautious. Find a good massage therapist.
I have held off for a long time posting about this since - I know it seems a little out there. But I don't want to keep it to myself either since it's been 2 years of using oils (and I haven't used them on a regular basis over the 2 years... But I did have a lot of use during that period Jan 2012 to July 2012) and my MRIS are showing good results.
Also, I decline all dental X-rays. Period. I started doing that in 2012 too… my symptom flareup in 2011 seemed to correlate to having a full set of dental X-ray done a few month prior…but who knows? again, who knows..but I decline them….my teeth are overall good and I believe the ADA only recommends bite wings once per year. I just decline them period which makes my dentist perturbed but it's my head, not his.
If anyone wants to discuss these items further you can reach me at galejesse@hotmail.com
GOOD LUCK EVERYONE!!!
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Ooops..my next MRI is July 2015! I don't have to go back for 2 years..and if that one is good, then 4 years….Yippee!
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Interesting...
I too have declined all dental x-rays since the discovery of the AN... hmmmm. A fellow ANer (not on this forum) just had his wisdom teeth pulled. He is well into his 50s. He said that he feels as if some of the fullness in his ear has dissipated since the wisdom teeth came out. They were very infected. His dentist mentioned that many people come to him to have their wisdom teeth pulled later in life complaining of hearing problems. Once the teeth are gone the hearing issues resolve themselves.
Thanks for posting! Keep shrinking!
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Hi all...
Was expecting my annual MRI scan this month but my trusted consultant has stated that because my AN has shown continual stability and recent further reduction in size, he is arranging for biennial scans. New territory for me as I commence my 13th year in 'W & W' so next MRI is scheduled for March 2015. As always I remain totally focused on maintaining my healthy lifestyle and positive in thought that 'W & W' was the right decision for me. In furtherance of my personal therapy in dealing with the AN condition I intend taking a year out from accessing the ANA site and will post the, hopefully good, results of my next MRI scan during April 2015.
In the interim very best wishes to all fellow ANers, especially my totally committed 'long termer'
'W & W' buddies and please do not hesitate to drop me a PM at any time if I can be of any help or you have any news to share.
Best Regards
Derek
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Have a wonderful ANA vacation Derek!
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Thanks for starting the W+W Brigade and all the good posts... It has really helped me along the way and will be looking fowards to hear from you again... W+W hopefully forever. Best wishes, Mickey
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Great news! Just got my MRI results and the tumor hasn't grown at all. New scan results are much more accurate because it was done in a newer machine that created narrower image slices and I got contrast material injected through the veins. Still very decent hearing on my left ear and no other symptoms. I will continue my W&W journey because I see no value in surgery at the moment. Removing a tumor this size would most likely cause SSD and other possible complications. I am very happy with the results, because I experienced significant paranoia and anxiety before the new MRI was taken.
Thank you for your support. :)
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logitech23 ~
Congratulations! I'm pleased to learn that the MRI showed no growth and that your pre-scan anxiety proved unwarranted (but yet, understandable).
Jim
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What do you all think about eating organic and no added growth hormone dairy and meat. And taking low dose aspirin 2 times per day. Anyone else doing this? I just had my repeat MRI in May, will have a repeat hearing test in November and if all goes well won't have another MRI til May 2015. I'll do anything if it improves my outcomes, reduces symptoms and stops tumor growth.
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Beth - if anything, it's good for your overall health.
Keep us posted,
Sheryl
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What do you all think about eating organic and no added growth hormone dairy and meat. And taking low dose aspirin 2 times per day. Anyone else doing this? I just had my repeat MRI in May, will have a repeat hearing test in November and if all goes well won't have another MRI til May 2015. I'll do anything if it improves my outcomes, reduces symptoms and stops tumor growth.
I can't disagree with wholesome food but I'm not yet comfortable with the low-dose Aspirin regimen. I did read recently, though, that some medical report suggested Aspirin provides benefit and I'd consider it if there's good evidence that tumor growth is halted.
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Hello Everyone,
I live in Sweden & was diagnosed with Vestibular Schwannoma yesterday. At first it only effected my balance but am now also beginning to get a continuous ringing in my ear.
I'm actually from Scotland & Swedish is tough enough without having to understand the medical terms :) I've been reading through some of your posts & everyone seems very postive, upbeat & brave so I hope I can take some of that good energy.
Does anyone have any tips on what information I should ask for the doctors for? It seems that asking about the size is one.
Thanks for any advice or tips.
Chris
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Chris,
Check out the tab -"Pre-Treatment" then "Questions to ask your Physicians". I just read an AA Milne quote that I love-I'm just paraphrasing here- Remember, you are braver than you believe, stronger than you look and smarter than you think. It is my new mantra! All the best!
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Hi Beth,
Thanks. I'll check that out. That was a nice quote. I like that :)
If you can believe it, one of the first people I talked to, apart from the family was "Uri Geller"!! I listened to him in a podacast & emailed him on his thoughts about positive thinking, etc. He replied saying he wasn't a healer or miracle worker and believed in medical science but he gave me his number & said I could give him a call which I did! I talked to him for 10 mins or so. Nice guy but unfortunately even he couldn't use the power of his mind to cure this :)
Thanks again & good luck to you
Chris
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Maybe you can ask Uri to focus on shrinking all ANs world wide-meanwhile I'll do the same. :)I believe in the collective power of the human mind. Let's get rid of these things! :)
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It's a sad fact that healing has to be directly targeted at the intended recipient for it to have any chance of success. Were it any other way then all suffering could have been eliminated long ago....
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Healing is a very personal journey. At the risk of sounding too airy fairy... I feel one must create quiet and stillness to go inward to find one's own path for healing. Meditation, exercise, playing a sport, listening to music, taking a bath. Whatever takes you to that place. Sometimes it works, sometimes it doesn't. One thing that works for one person may not work for someone else. This AN journey has certainly opened my eyes to a new way of thinking and being in touch with my mind, body and soul.
Chris...I think the significant thing to know is the size of the AN found in your head. Sounds like it's small if they are suggesting wait and watch. How bad are your balance symptoms? I practice Kundalini yoga which strengthens to entire nervous system and helps with balance issues involving the vestibular nerve. My tinnitus kicks up when I'm exposed to loud noises or silence. I put cotton in my ears when exposed to loud noises. In my opinion, actual earplugs are too much as they allow too much pressure to build up inside the ear. And for silence, I sleep with a white noise machine.
Hope this helps with your introduction into the subculture of ANs!
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Hi Beth. It seems Uri does not want to commit himself to any miracle cures - too much scandal possibility which I think he's already had a lot of through the years :) Really nice guy though & thoughtful of him to take the time.
Keith - I agree.
Lisa - thanks for the tips. I have a time with the doctor on Monday & will put a few more questions regarding size, etc. I was surprised you are checking yours so regularly! My doctor said it will be monitored "yearly" but yours seems to be much more frequently??
My balance has been bad the past 3 months since it first occured - but they only diagnosed me with VS/AN this week. I've managed to improve it by lots of walking, moving about & even jogging a little. I've also been experiencing tinnitus now which I didn't before.
I like your idea of meditation & yoga. Even it if doesn't help the AN I'm sure it has an overall good effect on your body & mind.
Thanks again to you all for the tips & positive words. It's hard to explain to someone who doesn't have it & helps to talk to those in the same boat.
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Hey Derek.
I have been in W&W since Sept., 2013. I have been off the web site for several months. When I got back on today i wanted to see how you were doing since you, my man, are the W&W hero! :)
Glad you are still in w&w! Your experience is encouraging.
Best wishes & God bless,
Russ
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Hi there Russ...
Many thanks for your kind comments. I continue to enjoy good health with no new AN symptoms and it is now over 12 years since diagnosis when I was then aged 58 and have recently entered my 70's! I remain steadfastly committed to W&W and for 99% of the time on a day to day basis I am quite oblivious to the fact that I actually have an acoustic neuroma.
I continue to maintain my healthy lifestyle and remain totally committed in my self-belief that W&W was the correct decision for me.
I am now subject to biennial MRI scans, my next scan being due in March 2015 and I am hopeful that I will get another good result with perhaps even a further reduction in the size being recorded.
Congrats on your 1st anniversary in W&W Russ and very best wishes for your forthcoming MRI scan. Hopefully you too can remain in the W&W status ad infinitum :)
Best Regards
Derek
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I hope I am as fortunate as your good self - it shows that W&W can be a valid regimen. :)
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I am also have been on W&W for just one year and my AN didn't increase in size. I sure hope I can follow in Dereck's and Keithmac's footsteps! It is nice to know there is hope.
Best wishes! MG
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Hi Derek and Lisa,
I'm 33, female. Just found to have AN last Monday. It's 1.3cm in size.
My doctor advised me to be on observation as this is what his patients has been doing (he has seen 4 AN so far, exposure in my country is minimal as my country is really small).
It frustrates me quite a bit initially as I feel I'm really too young to wait and see what will happen. The observation plan seems too passive to my liking. However, after seeing both of your posts, i found new meaning to this plan. I realize I have to be very pro active if I am firm about this plan. It's inspiring to hear about your progress and even more inspiring to hear about the changes you made to your life.
I'm now more comfortable in choosing W&W. I've just drafted a plan to make positive changes to my life eg, meditation, exercise, balanced diet, sleeping early etc. Besides these, may I know if both of you reduce your workload as well?
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Hi Cindu and welcome.
You say you are from a small country and your English is wonderful. Where are you located? Sorry to hear you now join our journey......
Phyl
Hi Derek and Lisa,
I'm 33, female. Just found to have AN last Monday. It's 1.3cm in size.
My doctor advised me to be on observation as this is what his patients has been doing (he has seen 4 AN so far, exposure in my country is minimal as my country is really small).
It frustrates me quite a bit initially as I feel I'm really too young to wait and see what will happen. The observation plan seems too passive to my liking. However, after seeing both of your posts, i found new meaning to this plan. I realize I have to be very pro active if I am firm about this plan. It's inspiring to hear about your progress and even more inspiring to hear about the changes you made to your life.
I'm now more comfortable in choosing W&W. I've just drafted a plan to make positive changes to my life eg, meditation, exercise, balanced diet, sleeping early etc. Besides these, may I know if both of you reduce your workload as well?
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Greetings Cindu,
Diagnosis is the first step in the AN journey. It's pretty scary but take a deep breath and try not to let it create too much anxiety for you. I was petrified upon diagnosis and I think this is a pretty normal reaction. If one must have a brain tumor, these are the ones to have!
Everyone's AN journey is uniquely different. What are your symptoms? Fill us in a bit more about how the AN was discovered. My work is freelance and unpredictable and in my 30s my workload was quite heavy and stressful. Less so now. I left an unhappy marriage that was very stressful just months before the AN diagnosis.
I highly recommend mantra (aka chanting) with your meditation. The vibrations of sound are very healing. Here's a mantra for healing:
12 minute version: https://www.youtube.com/watch?v=M0MANeYSGkQ
31 Minute version: https://www.youtube.com/watch?v=TifX6NDCPCg
And here's another 13 minute one: https://www.youtube.com/watch?v=YQrs9zlOW1U
Let me know if I can be of more support.
All the best to you,
Lisa M
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Hi Cindu...
Sorry to learn of your diagnosis but so pleased that you found this website which will be of invaluable assistance to you as you commence your AN journey. I assume that your country apparently has limited resources and experience relevant to the treatment and management of acoustic neuromas. In consequence it is vital that you have regular MRI scans and act upon the advice and guidance of a consultant in whom you have complete trust particularly so when deciding on conservative management (W&W).
I was 57 years old when diagnosed and will soon be 71. I continue to enjoy good health in my retirement and have a full and active lifestyle.
Best Regards
Derek
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Hey Cindu! I see you joined the AN club and are lookining into W+W ... I`ve always thought this was a great first step approach on dealing with having a AN. At 58 I had a similar decision to make with a 1cm AN and tinnitus w/ minimal hearing loss + migranes. I`m 66 now and this treatment (way of life) has worked very well for me also. I`m actually feeling better than when first diognosed (headaches very rare and minimal) everything else stable... Give things a chance and monitor things closely... Here`s hoping we can always stay on this W+W program watching everything in technology in ways so stay healthy... Best wishes, Mickey
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Hi Pearl,
Thanks for the welcome:) sorry, I'm not comfortable to reveal my country as it could possibly get me identified (based on the AN prevalence rate, there could be less than 50 AN in my country...lol).
Hi Lisa, Derek and Mickey,
Thanks for the assurance. It was indeed frightening initially, I allowed myself to cry over it for the first few days, I'm now more at peace the past few days. I always thought its rather exciting to see how life presents and one of my beliefs is to live life to the fullest regardless what comes my way. I guess this beliefs helps quite a bit with my acceptance of this condition. In addition, I'm mindful about not wanting the tumor to cause more disruption to my life than it should.
I'm rather lucky on the symptoms so far (cross finger) as my hearing is still intact and i do not experience any symptoms currently other than feeling fatigue easily (could be due to my lack of exercise too...lol), having some vacuum feeling in my left ear and occasional sharp pain at my left brain where the tumor is.
I had 2 periods of temporary left facial palsy in 2012 and 2014. The doctors diagnosed them as Bell's palsy initially. After I had the facial palsy in July 2014, I felt persistent stiffness on my left face whenever I'm too tired. The doctor then recommended MRI and this is how I found out.
Other than switching to a healthier lifestyle, I wonder if you guys also reduce your workload? Eg. work less days. My workload is rather stressful for me and I wonder if it will affect my tumor growth, especially now that I aim to reduce the size of my tumor.
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Hi Cindu .....
I want to add my welcome to you, as well.
Since you are from a country where the doctors have seen so few ANs, you might like to know that you can send a copy of your MRI to experienced AN doctors in the US for second (or third, etc.) opinions. If you would like contact information for some of them, just let us know.
When I was at House Ear Clinic in Los Angeles four years ago, there was a young woman there from Ecuador having her tumor removed so it is not out of the question to go out of your country for treatment if needed.
Many thoughts and prayers.
Clarice
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...I continue to maintain my healthy lifestyle and remain totally committed in my self-belief that W&W was the correct decision for me.
I am now subject to biennial MRI scans, my next scan being due in March 2015 and I am hopeful that I will get another good result...
[/quote]
HEY! I'M A TEENAGER...AGAIN!!
Just wanted to update you and share my further good news. After having had annual MRI scans for the past 11 years I had my first biennial scan in March this year. I have just received my results today and can happily report that everything is stable with no changes over the last 2 years. I have now clocked up 13 years and 2 months since diagnosis and my next scan is scheduled for my 15th year in 2017 when, hopefully, I can report a similar result.
Best regards to all my W&W pals :)
Regards
Derek
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Derek,
That is amazing and wonderful news. You have certainly shown us the best face of this condition. Keep up the good work.
Best wishes,
NYL
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Hi Derek - Guess we are still the king and queen of wait and watch. I, too, just had my annual MRI and found out all is stable. So, my W&W count now is 13 years and 6 months. They are allowing me to spread out my MRI's to 18 months or even 24 months as long as symptoms do not appear. I have had some very minimal growth over the 13-1/2 years but the doctors are not concerned.
So glad to hear your great report and look forward to hearing the same in 2017!!
Sheryl
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Hi there NYL & Sheryl...
Many thanks for your good wishes and encouraging comments NYL.
Great news re your recent MRI scan results Sheryl and that you too can now go the biennial route! Time just seems to fly by these days and I cannot believe that I was 57 when diagnosed and here I am heading for 72 :o. Looking ahead, I have another four biennial MRI scans before my 80th birthday and I have decided that if everything is still stable when I'm 80 then I am going to declare that I have won this battle with the 'little bugger' and may say cheerio to the scanner!
So sorry to note from your post in another thread that your hubby is experiencing such problems with his meningioma condition. I do hope that he will eventually have a positive outcome.
Best Regards
Derek
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So happy for you both Derek and Sheryl ! I am ready to have my 3rd MRI. Sure hope it's good news too!
MG
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Hi Cathy...
Many thanks for your good wishes and looking forward to some good news from you re your forthcoming scan.
Regards
Derek
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Greetings Derek! Greetings Cheryl!
So happy to hear your wonderful news! And I am so grateful to have stumbled upon this thread almost 4 years ago. You gave me the courage to wait and watch which was absolutely the right decision for me. Here's to the King and Queen of W&W!
Best,
Lisa M
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Thanks Lisa - W&W isn't for everyone - so glad it's working out for you.
Keep us posted.
Sheryl
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HI Guys.... Glad to hear everybody still doing well. I have my 2 year mri coming up soon and hope to add more good AN news.... I`ll start by saying I`m feeling very good and think whatever little ailments I do have are basicly age related.... { 8 yrs. diognosed, 66) Looking for results around a month. Best wishes, Mickey
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HI Guys.... Glad to hear everybody still doing well. I have my 2 year mri coming up soon and hope to add more good AN news.... I`ll start by saying I`m feeling very good and think whatever little ailments I do have are basicly age related.... { 8 yrs. diognosed, 66) Looking for results around a month. Best wishes, Mickey
Thanks for bringing up a good point about age. I find things here and there being different, tired, sore legs, less patience, having less interest in things that excite other people. But like you, I think much of it is to age. I'm 48 and far from needing a hole dug, but I am NOT 28 anymore. If I bang my elbow on the garbage can outside, it hurts for a month instead of a week. I hear other parents speaking with excitement about vacation destinations at my kids' soccer practices, but I've been to those places, never found most of them fascinating, and am just not that interested in them like a I would have been 20 years ago. These parents are younger than me, they get excited about things I have done already. That's not my AN, it's my place in life.
I get up at 0500 and I need a nap after dinner at 1600. That's not "fatigue", it's called working for a living and not being 19 years old anymore.
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I think we all generally agree that a healthy lifestyle goes in tandem with coping with the AN situation particularly when opting for the W&W mode of treatment. In furtherance it is always desirable to avoid being overweight and I thought the following may be of interest. During the last Christmas holiday period I lapsed and over indulged somewhat gaining a few extra unwanted pounds so decided to rectify the matter. It is well documented that sugar is prolific in all sorts of foods and is often the main causation of weight gain. In March I decided to vastly reduce my sugar intake including a total abstinence of biscuits, cakes and confectionery whilst maintaining my otherwise regular healthy eating and moderate exercise regime.
The result has astonished me in that after 2 months I have lost a total of 17 pounds :o and do feel all the better for it.
Certainly worth a try if you are looking to lose weight with next to no effort!
Regards
Derek
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I'm not persuaded that weight loss has any special relevance on a website specific to acoustic neuromas, their management and treatment. The potential benefits of healthy eating are undisputed but the discussion is more appropriate elsewhere.
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I am not advocating that there is a direct relevance between being overweight and developing an acoustic neuroma per se. The purpose of my post was to merely highlight the fact that consumption of excess sugar can result in unwanted weight gain which can have an adverse affect upon ones health and the simple steps that can be taken to prevent or reverse the situation.
With regard to sugar I cannot over emphasise the health problems that can ensue from over consumption of this commodity. It is well documented in medical journals that the average person consumes approx. half cup of sugar per day which continually upsets the body chemistry causing the inflammatory process to manifest thereby increasing the chances of developing disease. The less sugar we consume results in a corresponding reduction in inflammation. The benefits of this is that we develop a stronger immune system to defend against infections and diseases. One of the scourges of the AN condition is inflammation which aids and abets tumour growth and which is why anti inflammatory steroids are often prescribed to reduce and prevent inflammation around brain tumours. Therefore any advice or action that reduces inflammation must surely be in the interests of those diagnosed with an acoustic neuroma.
I do believe that in the health interests of all who use this website and who are unfortunate enough to have developed an acoustic neuroma condition, that my post is relevant in assisting with the goal of maintaining a healthy lifestyle and in adopting a positive regime with regard to the day to day management of the condition.
Regards
Derek
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I am not advocating that there is a direct relevance between being overweight and developing an acoustic neuroma per se. The purpose of my post was to merely highlight the fact that consumption of excess sugar can result in unwanted weight gain which can have an adverse affect upon ones health and the simple steps that can be taken to prevent or reverse the situation.
With regard to sugar I cannot over emphasise the health problems that can ensue from over consumption of this commodity. It is well documented in medical journals that the average person consumes approx. half cup of sugar per day which continually upsets the body chemistry causing the inflammatory process to manifest thereby increasing the chances of developing disease. The less sugar we consume results in a corresponding reduction in inflammation. The benefits of this is that we develop a stronger immune system to defend against infections and diseases. One of the scourges of the AN condition is inflammation which aids and abets tumour growth and which is why anti inflammatory steroids are often prescribed to reduce and prevent inflammation around brain tumours. Therefore any advice or action that reduces inflammation must surely be in the interests of those diagnosed with an acoustic neuroma.
I do believe that in the health interests of all who use this website and who are unfortunate enough to have developed an acoustic neuroma condition, that my post is relevant in assisting with the goal of maintaining a healthy lifestyle and in adopting a positive regime with regard to the day to day management of the condition.
Regards
Derek
Are you medically qualified to be able link sugar, inflammatory response and acoustic neuromas to sugar? And/or can you indicate research showing linkage? If not then it's an unproven supposition.
Even though the potential benefits of reduced sugar intake and weight on general health are indisputable what evidence is there that acoustic neuroma management, treatment and outcomes are beneficially impacted?
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Hi all,
While I appreciate the comments of the concerns of AN'ers health, as it may pertain to other aspects of their health, I would like to remind everyone that information provided here is based solely on individual research done by AN'ers, while none is medically proven to impact AN's. AN epidemiology is currently in study via the Yale University study, sanctioned by the ANA. Until concrete answers are found, nothing is proven to impact AN's unless something is confirmed, which is usually posted on the main ANA site, which can be found at www.anausa.org.
As one that consumes large amounts of sugar (if you have recently seen me, you get it...), this has had no impact on my AN condition. My AN was treated over 9 years ago via radiation. Until someone tells me that there is a definite correlation, I will still consume sugar.
So, with that said, I remind everyone that individual research done by AN'ers on this site is that... research we have done on our own. We are to respect what one may have found and potentially learn from it. Healthy debates are nice and fine... and once they cross the line, I will step in and put a halt to it.
Nuff said.
I return you to your HEALTHY debate and remind everyone to stay on track.
thanks.
Phyl
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Hello,
I got my MRI results back and my AN increased in size by 4 mm which makes it 1.3 cm. :( I was hoping for a better outcome but I guess "Tiny" is growing. My hearing is deteriorating also. Now I don't know what to do. I have been on W&W since 2012. Any suggestion from you Watch & Waiters??
MG
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Any suggestion from you Watch & Waiters??
MG
My suggestions is to start thinking in terms of "when" and not "if" regarding treatment. I'm WW with a similar sized tumor and hoping to put treatment off forever. Realistically, based on what my Dr says and what my gut says, I won't make it forever. At some point, I will be in the same boat as you and will have to look at treatment as less of an abstract thing, and more of a concrete reality.
I would factor in your age, how big you think it should get before you treat it, and what time of year etc would be best for you to be laid up if you get traditional surgery.
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Have you made any changes in your lifestyle since diagnosis? Did you have your MRI at the same place, same machine, same technician? How is your hearing deteriorating? Any other symptoms? Is your life stressful?
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Have you made any changes in your lifestyle since diagnosis? Did you have your MRI at the same place, same machine, same technician? How is your hearing deteriorating? Any other symptoms? Is your life stressful?
in order asked:
no
yes, yes, no
haven't noticed any changes in my hearing
no other symptoms
no
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Thanks ANGuy for your comments. I would like to be able to stay on W&W too but just don't know if I should chance it. I am 65 and I am a petite built woman and kind of frail since I discovered my AN. Something tells me not to have surgery. I feel I wouldn't make it. Just a gut instinct. I have a heart issue so I just don't want to put myself through that. I would rather go GK or CK. Oh it's just so hard to know what is best. ::).
LisaM, The answer is no, not the same place on my second MRI . It showed no growth. Went back to the first place this time and it showed growth as I mentioned. My hearing is much worse. Pain is a little worse then last year. I have tinnitus but that's the same. Yes since November I have had stress in my life. Mother -in- law broke her back and then her hip three months later. :'(. One heck of a year!
I will post after my appointment. Thanks again for the info.
MG
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Thanks ANGuy for your comments. I would like to be able to stay on W&W too but just don't know if I should chance it. I am 65 and I am a petite built woman and kind of frail since I discovered my AN. Something tells me not to have surgery. I feel I wouldn't make it. Just a gut instinct. I have a heart issue so I just don't want to put myself through that. I would rather go GK or CK. Oh it's just so hard to know what is best. ::).
LisaM, The answer is no, not the same place on my second MRI . It showed no growth. Went back to the first place this time and it showed growth as I mentioned. My hearing is much worse. Pain is a little worse then last year. I have tinnitus but that's the same. Yes since November I have had stress in my life. Mother -in- law broke her back and then her hip three months later. :'(. One heck of a year!
I post after my appointment. Thanks again for the info.
MG
Hello,
I got my MRI results back and my AN increased in size by 4 mm which makes it 1.3 cm. :( I was hoping for a better outcome but I guess "Tiny" is growing. My hearing is deteriorating also. Now I don't know what to do. I have been on W&W since 2012. Any suggestion from you Watch & Waiters??
MG
Hi Cathy...
So sorry to learn of the apparent increase of 4mm which if correct is about double the accepted normal increase of between 1mm and 2mm per annum. However you also have to factor in allowable tolerances relevant to the imaging process of the MRI scanner and the interpretation of the data by the neuroradiologist which can have an affect upon the actual results.
Having regard to the aforementioned aspects together with your present age and health circumstances, I would be inclined to discuss your predicament with your consultant, whose advise you hopefully trust implicitly, and be guided by his professional expertise. Hopefully, as your AN is still relatively small, you may well be able to have a further scan in a few months and that result will probably assist in establishing whether or not you will be able to continue in W&W.
Best Regards
Derek
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Hi Derek,
I am hoping for the chance to still be on W&W a little while longer and as you mentioned could have another scan in a few months. I will post again after I speak with my doctor in a few weeks.
Thanks for your post as I always appreciate your input.
Best wishes,
Cathy
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Listen to your gut... as well as your doctor. You know your body best. MRIs can fluctuate. In the meantime drink lots and lots of water. Simple dehydration can do all kinds of damage in our heads. Wishing you lots and lots of good health.
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LisaM , thanks! :)
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Hi fellow W+W Brigadersers! I just wanted to report that I got my latest MRI report.... After 2 years eveything is stable (no change) This is going on into my 9th year now and all is good. I`m happy to encourge a W+W alternitive with all the knowledge here to stay proactive and take this treatment into the future. Alot of breakthroughs which are helping AN patients in every respect.... Stay on top of things ! God Bless, Mickey
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Hi there Mickey...
Many congrats on your good news and encouragement to those contemplating the W&W treatment option. Well done and long may your situation continue as you head towards your 10th anniversary since diagnosis.
Best Regards
Derek
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Hooray!
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Thanks Guys.... Derek, You have made a big impact on me starting this W+W Brigade board. Your nice way of writing and explaining things was very helpful with me in choosing this way of treating my condition. I thank you! and hope whatever little bit I may have said here may have helped someone as much as what you have helped me. Best wishes, Sincerely, Mickey
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Hi everyone,
I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.
Good luck to all!
MG
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Hi everyone,
I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.
Good luck to all!
MG
I'm really sorry to hear that outcome and I expect I may also be in a similar situation one day. Good luck researching which treatment to go for - there's lots of information and experience on this website to help your eventual decision.
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Hi everyone,
I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.
Good luck to all!
MG
Hi Cathy...
So sorry that you did not get the news you hoped for but on the positive side you still have a year to monitor your situation. Did your Doctor actually confirm that there was a definite growth spurt on this occasion and verified by your recent MRI scan and neuroradiology report? If you have been unduly stressed of late then the 'fluttering' lip syndrome may well be attributable to fatigue and anxiety which is fairly common. With regard to your AN apparently 'getting close to the brain', in my personal situation the AN has been contacting with my brainstem since diagnosis over 13 years ago but not compressing it. This aspect has not caused me any particular problems.
Do keep your options open Cathy and perhaps consider a second professional opinion to assist with your deliberations. Very best wishes for an eventual successful outcome.
Best Regards
Derek
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Keithmac,
Thanks for the good luck. I wish that for you also. Maybe you will be able to remain on W&W.
Best of luck,
Cathy (MG)
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Hi Derek,
In answer to your question , yes, the doctor did note that there had been 4 mm of growth in this last year. He showed me my first MRI and then the recent one. Quite a difference in size. Your comment about your AN being close to your brainstem was enlightning to say the least! Plus the lip quivering due to stress made me feel better also. :) I appreciate your positive comments. I think I will stop worrying about this now and keep it on the back burner for awhile. Thank you Derek.
Best Wishes,
Cathy
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Hi Derek,
In answer to your question , yes, the doctor did note that there had been 4 mm of growth in this last year. He showed me my first MRI and then the recent one. Quite a difference in size. Your comment about your AN being close to your brainstem was enlightning to say the least! Plus the lip quivering due to stress made me feel better also. :) I appreciate your positive comments. I think I will stop worrying about this now and keep it on the back burner for awhile. Thank you Derek.
Best Wishes,
Cathy
Hi again Cathy..
Apologies if I misinterpreted your post on the 27th June re your recent visit to the Doctor whereby I believe I mistakenly thought that your Doctor had indicated in his comment that your AN was 'getting close to the brain' indicating there had been an increase in size ADDITIONAL to the 4mm which you had previously referred to in your post dated 3rd June. If there has been no such further increase then I would definitely (as you say) 'keep things on the back burner for awhile' and you may well get a hopefully pleasant surprise at your next scheduled scan which will greatly assist with your ultimate treatment deliberations. No need to respond to this post Cathy.
Best Regards
Derek
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Hi all...
Regular 'forumites' will be aware that upon diagnosis in 2002 my AN measured 2.5cm and that following extensive research and acting upon professional advice, including assessing the risk factors, I decided to opt for the conservative ( W & W ) treatment strategy.
Throughout the ensuing years my AN has not had any increase in growth, I have had no increase in symptoms and indeed there has been an abatement of my symptoms and a decrease in size to it's current 1.3cm as of the MRI scan earlier this year.
I had a recent review with my consultant who indicated that the significant decrease in the size of my AN had not occurred until the 7th year following the initial diagnosis. For those currently subject to W & W and those contemplating this course of action I thought it may be helpful in furtherance of your deliberations if I enlightened you as to the actual timing of events particular to myself. I firmly believe that professional guidance, a strong will power / self belief and a healthy lifestyle / diet have worked for me notwithstanding perhaps, an element of luck as I head towards my 14th anniversary :)
Best Regards
Derek
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Thanks for the informative followup and continued good luck.
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Great News Derek - I'm still chugging along ahead of you. Year #14 in November!!!
Hubby, though, had a stroke and is currently in rehab. Improvement signs are slow but steady. Hopefully he will return to baseline. At least the recurrent meningiomas are behaving.
Sheryl
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Good news Derek!
After seeing the Radiation specialist this past week, I have decided to stay with W&W for another year. My balance in this past year has gotten much better and I now can drive again without getting dizzy! :) I guess my right side is taking over for the left. I will have another MRI in about 6 months to see if I have anymore growth. My quality of life is okay right now and I know once I get treatment my quality of life will go downhill fast.
Sheryl, sorry to hear about your husband. I hope he has a good recovery. Wow, 14 years ! Keep on going!
Best Wishes,
MG
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Wonderful news Derek. Had you not started this inspiring thread, I shiver to think what path I might have taken. 2.5 to 1.3. FANTASTIC!
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Thanks for your collective kind comments....even us 'long termers' still need the motivation, encouragement and support of those who really know what this constant battle is all about :)
Sheryl... so sorry that Larry is having such awful problems but pleased to note that he is making steady progress in his recovery. My thoughts and wishes are with you both for an eventual successful outcome.
Best Regards
Derek
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My quality of life is okay right now and I know once I get treatment my quality of life will go downhill fast.
MG
MG....I've heard from local AN support group members your age who had successful Cyber Knife radiation with Dr. Chang with no complications other than "being prone to fatigue."
Your quality of life may stay the same or improve as well.
Thinking positive.
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I waited too long for radiation.
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I waited too long for radiation.
Hi...
So sorry to learn of your predicament and I note that your post indicates that the size of your AN is now 'ineligible' for GK treatment. However the current dimensions of your AN appear to be still within the range suitable for GK treatment as tumours up to 4cm have been considered suitable for such treatment. It would be of interest to learn what your consultant has concluded.
Regards
Derek
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Hi,
Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.
Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.
It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.
Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery.
I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.
In my unique situation with an aggressive AN, only surgery is now recommended.
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Hi,
Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.
Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.
It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.
Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery.
I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.
In my unique situation with an aggressive AN, only surgery is now recommended.
Hi again Mc...
Many thanks for your succinct response and very best wishes for a successful outcome.
Regards
Derek
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Hi,
Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.
Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.
It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.
Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery.
I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.
In my unique situation with an aggressive AN, only surgery is now recommended.
Hi again Mc...
Many thanks for your succinct response and very best wishes for a successful outcome.
Regards
Derek
Mc...
I have re-read your original post in this thread and have to admit to having some concerns relevant to your decision to opt for microsurgery particularly so should I or anyone else have the unfortunate same circumstances befall them in the future. With that in mind I have consulted with a renowned states based Doctor who is a Radiation Oncologist with almost 40 years experience and who specialises in the Cyberknife process. I outlined the situation that you currently find yourself in and his response was (quote) "It could be treated with GK or CK. I see no reason why that growth rate should change things" (unquote)
I considered it incumbent upon myself to obtain professional clarification so as to assist others who may have to contemplate treatment options in similar circumstances.
As before Mc...my best wishes to you for a successful conclusion.
Regards
Derek
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I considered it incumbent upon myself to obtain professional clarification so as to assist others who may have to contemplate treatment options in similar circumstances.
Derek
Likewise.
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Can you describe what you mean by extension in your AN measurements.
As far as treatment, as been said many times. It's what feels right to you and what you feel is best for you. That said, lets say you weren't diagnosed in 15 and you were just diagnosed now and radiation was mentioned as a good option for the size of your AN? We just have no idea how these things will grow or not grow. It may not do anything for years nobody really knows. For what it's worth it doesn't matter if it's your thoughts or a renowned doctor it's just guessing as to what it will or will not do. Please take this with a huge grain of salt, it's just based on years of being around this forum. In reality, the chances of regrowth are going to be the same no matter what treatment you go with.
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Coming late to the conversation... The MRI that revealed the 5mm growth...was done it done at the same place as the original MRI for diagnosis? I feel it important for consistent measurements one must use the same machine, same tech, same Radiologist.
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Trust me when I tell you that I've done my research since my diagnosis on June 26, 2015. I have a college degree and I understand the bias in statistics, etc. Obviously, I would much rather have CK than traditional microsurgery if CK is what is best for success. Naturally, I want to do what's best for me, for the long run, instead of having complicated "salvage microsurgery" after failed radiation.
Derek, there are only a few world renowned stateside CK specialists with almost 40-years experience. It sounds like were talking about the same doctor. The other doctor with that many years experience specializes in gamma knife.
Yes, it was the exact same "open MRI" machine which I used 5-and-a-half months earlier, and the exact same radiation tech signed off on the report. I need to go to this specific MRI as it's the only OPEN MRI for my size of 6'3 tall, 375, size 16 shoes.
As for extension, it's the part of the tumor extending from the "intracranicular". My tumor went from 3mm extension to 8mm extension in just over 5 months.
I do think the opinion of a world renowned CK specialist who's been doing this for decades has a lot of weight. He could have just "cashed my check" and proceeded with radiation treatment; however, he made a conscious decision to point me in the microsurgery direction. Getting a "second opinion" after the world renowned expert says "no" feels like I'm asking for trouble. Obviously if you look long enough there will be someone willing to do almost any procedure$$.
Perhaps I should reword my comments and say that according to a world renowned CK specialist I may still be eligible for radiation, but radiation at this point it's highly not recommended given my unique situation of aggressive AN growth. Microsurgery is now recommended.
Best wishes and good luck to all.
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After receiving several second opinions, apparently many surgeons and radiation specialists have a big difference of opinion with regards to the treatment of aggressive or fast-growing acoustic neuroma tumors.
I am not a doctor, but most radiation oncologists put their success rate of tumor control between 95%-98% depending on tumor size at time of treatment; however, with respect to fast-growing "aggressive" Acoustic Neuromas the success rate with radiation drops significantly down between 80%-89%.
This is according to the world renowned radiation oncologists I've consulted with.
While still "good" odds, one has to consider all of this new information when considering microsurgery vs. radiation treatment and whether-or-not radiation still remains a "good" option for your individual case especially while "salvage microsurgery" may very well be likely down the road if treatment failure occurs.
Derek, thank you for posing the question to Dr. Medbery on the CK forum. At the end of the day, it appears there's a 50/50 split from all the specialists I've consulted with in regards to the appropriate treatment regarding fast-growing or aggressive AN's.
Best wishes.
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Derek, thank you for posing the question to Dr. Medbery on the CK forum. At the end of the day, it appears there's a 50/50 split from all the specialists I've consulted with in regards to the appropriate treatment regarding fast-growing or aggressive AN's.
Best wishes.
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Hi Mc...
Many thanks for updating us re your research and your conclusion concerning the conflicting views relevant to the various expert opinions. You certainly have a dilemma and of course the ultimate decision will be a personal one but whatever treatment option you decide upon it will be the right one for you.
From a personal perspective, upon diagnosis in 2002 I was advised to have immediate microsurgery but decided to opt for conservative management following my in-depth research into all aspects of the relevant available treatment options. I am now about to enter my 15th year in the 'watch & wait' mode with a reduction in the size of my AN and thankfully that has proved to be the correct choice. If I was in your position I would continue with 'watch & wait' and have another MRI scan in June. These tumours are so unpredictable that you may well find that there has been no further increase in the growth rate and you could then continue with conservative management with regular MRI scans to monitor the situation. However should the June scan results show that there has been a further increase in the growth rate then I would indeed consider early invasive treatment but I would first go with stereotactic radiosurgery then ultimately opt for excision should the radiosurgery prove unsuccessful. Just my 'few pence' (or cents) worth!
Do continue to keep us updated.
Best Regards
Derek
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I agree with what Derek has written.
Rushing into treatment unless there is a real life and death scenario doesn't make sense to me. I had two AN heavyweight surgeons tell me with urgency that I needed surgery and I needed it sooner than later. i chose to wait and watch saving hearing is one item put forth by the professionals to hurry to treatment. facial paralysis is another scary complication with these tumors - WITH OR WITHOUT treatment. Have you made any lifestyle changes since diagnosis? Right now you are most likely scared and stressed. Brain surgery is no picnic and you need to be sure it's what you need. Can you wait it out til June 2016?
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Each case in unique, and as you know every AN is different. Nobody has that crystal ball which can predict how someones tumor will progress.
My case was certainly unique in a few aspects.
I had "suicidal tinnitus" or "catastrophic tinnitus." I was off the charts loud. In most cases, it usually takes 6 - 18 months for newly diagnosed patients with severe tinnitus to acclimate to their new tinnitus (with the help of a hearing aid or masker).
It's been about 4 or 5 months since starting the tinnitus retraining therapy with the hearing aid, and recently I haven't worn my hearing aid in 2 weeks....so MUCH progress has been made indeed.
I started out at 100, now I'm down to 9.
I was concerned if I had radiation treatment that it would kill my hearing nerve, and therefor I wouldn't be able to treat my tinnitus anymore with the hearing aid. This is valid concern, and a reason why some doctors won't treat you with radiation because they're fearing your tinnitus will fluctuate/increase and ruin your quality of life again - making you suicidal.
Most radiation treatments have hearing loss/SSD associated with them, and also increased tinnitus, as a side effect. Some doctors may refuse to treat you if they know you were previously suicidal because of your tinnitus. They may think your quality of life might fluctuate back to the point of being suicidal and so they may recommend microsurgery. Even if they've never spoken to you....just email communications.
Others doctors will evaluate the exact same info and decide your still an "excellent" candidate. Same information ...different opinions from doctors who perform same treatments.
Combine this with the fact my AN was a fast-growing "aggressive" tumor and some radiologists will certainly shy away from treating you. While on the other hand, some doctors will still say you're an "excellent" candidate.
I'll never know if it's more about protecting their excellent local statistical outcomes at their facility, or really for the greater "benefit of the patient" and for protecting my health, or a difference in personal politics.... or on the flip side if they're accepting just for the money. I like to believe most doctors have our best interest at heart (even though I've seen just the opposite with other family members dealing with doctors).
Anyhow, if one CK or Gamma Knife doctor says "No", I can simply go down the street to the next guy who will say "Yes". And they know this.
But is it the right thing to do?
It's such a frustrating position for a measly lay person to be in, not to mention dealing with a brain tumor.
Derek, I apologize for hijacking this thread. I guess I should have started a new topic. The bottom line is, like everyone else, each case is special. Mine shouldn't be used as a general example for all Acoustic Neuromas.
LisaM, it's interesting that you mentioned some of the top surgeons recommended surgery immediately, only to have your tumor not grow and shrink. In my family, our genes make everything in our body grow to the max. I'm 6'3 tall, 370lbs with size 16 shoes.
Lifestyle changes?
It's very difficult to make lifestyle changes when you're depressed and facing a brain tumor, plus a litany of other LIFE issues. I know I need to lose weight, but it's never easy, especially in Michigan weather.
I think it's best to treat it now before it gets too big and I won't be a candidate for radiation. But then again, even when my tumor is small, some radiation specialist still refuse to treat it. Go figure.
Perhaps I should have kept my mouth shut, and not have asked so many questions ???
Best wishes to everyone on their journey.
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ANs are indeed a personal journey. Best wishes for a successful treatment, whichever you chose.
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Hi there 'Cityview'...
Many thanks for your kind comments which are greatly appreciated.
You certainly have had more than your fair share of health related problems and it is to your credit that you have dealt with thyroid cancer simultaneous to your acoustic neuroma which must have been enormously stressful for you and your family to contend with. It is particularly pleasing to know that you have had the 'all clear' relevant to your thyroid problem...well done you!
I have perused your previous posts and it is patently apparent that you have wisdom in abundance evidenced by your constant quest to probe all aspects of AN related matters not least those relating to invasive treatment options. Your posts are full of logical and reasoned argument which is invaluable particularly to those newly diagnosed who are often panic stricken and very liable to making rash decisions which could be regretted at a later date.
I was in similar thought when diagnosed almost 15 years ago and fortunately, just as you did, I decided not to opt for any form of early invasive treatment until I had carried out in depth research, a decision that I am so very glad that I made. I do wish that folks would realise that whatever invasive treatment is eventually opted for they will still be subject of 'watch & wait' ad infinitum as regular MRI scans will always be required to monitor for tumour regrowth etc. My maxim has always been and will always be, to stay in 'watch & wait' under the guidance of a trusted consultant and with regular MRI scans until and IF circumstances / symptoms dictate otherwise.....oh and I do hope that your cat also managed to survive it's personal health crisis!
Best Regards
Derek
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Hi Cityview,
My thyroid cyst was incidentally diagnosed during a brain CT scan after I was diagnosed AN. Luckily my endocrinologist, neurosurgeon and ENT are all ethical and I have been waiting and watch for both thyroid cyst (not cancer) for more than 2 years.
You can see from my signature that my AN is growing. now I am on the way to receive CK treatment.
Reading your message and few other discussion, I start to wonder what can cause AN? Inflamaion, stress, thyroid issue, injured tissues...etc. I am not quite support money spending on research on - if AN is a inherited disease or gene related.
is your AN on the same side as your thyroid which has cancer? My AN and thyroid cyst are at my left side.
thank you
KJ
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KJ,
jumping in here,, I also had thyroid issues. I was diagnosed with thyroid nodules and watched them (with annual ultrasounds to monitor them) for about 25 years before one of them calcified and developed cancer. I ultimately had thyroid removed along with one parathyroid gland which was also enlarged. You may also be able to monitor yours without treatment for awhile. And as my Dr said,, if you have to get cancer,, thyroid is the second "best" to have as far as treatable and curable,,, I had mine removed in 2004 and am doing fine from that.
There is no research yet to prove a connection,, but it does seem awfully suspicious that the thyroid and parathyroid issues would all be on the same side as AN. My AN was not found until 2008, however, from the size of it at diagnosis,,, 2.5 cm,, I'm quite sure I had had it for awhile with no real symptoms. I had surgery in 2011 to have it removed.
Good luck to you.
Jane
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Hi from the wife of a guy who had Proton Beam Treatment in 2013 to treat a 1.5 cm vestibular schwannoma or acoustic neuroma. I really liked this top Tips List for those who are in observation mode.
My hubby continues to be fine after his 2013 Proton Beam Therapy. If you want details about his situation, just search for my posts. I wrote a lot about it (maybe I wrote too much- sorry!)
Great advice: 9. Regular check on ears ( build up of wax can have a marked affect upon hearing impairment...syringing may be required to maintain maximum performance (particularly in the unaffected ear) and per Dr Medbery on the CKPSG 'site, it is a completely safe procedure for those with AN) I will alert my husband about how it would be smart to get the good ear checked out by the second otolaryngologist (or "Ear Nose and Throat MD")who ordered the MRI and who then who diagnosed him with the acoustic neuroma. I will mention how it would be wise to check for the wax build up issues. He has not seen the doc since the diagnosis and we hadn't thought about this. We are not aware of Dr. Medbery or the CKPSG site, so thanks for the advice.
All the other tips were really great too... getting regular exercise that helps with the balance and with stress, eating foods that are known to assist with fighting inflammation...getting proper sleep... Keeping things on the lighter side with lots of laughing/humor.. Great stuff!
It is a "gift" that those who are watching and waiting are getting the MRIs. It would have been a much better situation for my husband if the original ENT doctor had ordered an MRI. I hope you all are very diligent with getting those MRIs..please don't assume that this is always be slow growing and please do not skip the MRIs. My husband went deaf in his one ear about 3 years after his original ENT doc said he had some hearing loss in that ear. Take good care of yourselves and best wishes to all of you.
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Whilst regular MRI scans to monitor acoustic neuromas are not something that we look forward to, there is a significant plus factor for 'ANers' in that any other latent brain related medical problems will be identified and any subsequent intervention can be undertaken at an early stage. Just a thought when looking for 'positives'!
Regards
Derek
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Greetings Fellow W&W Brigaders...
Wanted to share my exciting news...
I had my follow up MRI from my February 12th, 2012 MRI last week. The AN continues to shrink! Here are the VERY detailed measurements and report:
April 2011 = 2.0cm x 1.8cm x 1.7cm (diagnosis measurements)
11/28/12 Report: " Once again seen is an extraaxial mass with avid enhancement in the left cerebellopontine angle with extension into the internal auditory canal, causing widening of the IAC. However, there has been definite interval decrease in the size of the tumor.
Ten consecutive measurements were taken on the 3D Fiesta images starting at the most caudal portion of the root entry zone of the trigeminal nerve. Ten consecutive measurements were done in the two dimensions (anteroposterior and transverse).
February 12 2012 = 10 x 6mm, 11 x 8mm, 11 x 8mm, 11 x 8mm. 12 x 12mm 13 x 13mm, 13 x 14mm, 13 x13mm, 13 x 14mm, 13 x13mm
November 28 2012 = 4 x 3mm, 5 x 3mm, 5 x 7mm, 6 x 8mm, 7 x 10mm, 6 x 11mm, 8 x 11mm, 9 x 11mm, 9 x 11mm, 9 x 12mm
Radiologist took very detailed measurements to be sure of the reduction and is now measuring in mm, not cm. Most every measurement is less than a centimeter! I've had each MRI done in the same place, same technician, same machine, same radiologist.
Though I'm experiencing some pretty loud tinnitus tonight (probably from my 6 year old screaming with excitement about getting Christmas tree) I am SO HAPPY! I send you all shrinking thoughts!
xxoo,
Lisa M
Hi Lisa,
You have a very interesting post from late 2012, which I've quoted above. It shows the progress of your wait and watch tumor shrinkage, which is (rare and) good news.
I'm having trouble with your initial tumor size. In your signature, it says "AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm", however in your summary is says, "April 2011 = 2.0cm x 1.8cm x 1.7cm (diagnosis measurements)". The first measurement is different and I'm wondering if the largest dimension was 1.4cm or 2.0cm?
By the way, congratulations on your impresive tumor shrinkage.
Do you know other forum members, apart from Derek, that have had tumor shrinkages?
Cheers,
ANSydney
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Greetings Sydney,
If memory serves me correctly... the very first measurements I received about the AN were given to me by my Dr at House here in LA. He interpreted what the radiologist reported and those first numbers were the House Dr's numbers not the radiologist's. Later in the process I realized that the radiologist's numbers were different from the doctor at House. I haven't thought about this in a very long while but I think I switched and used only the radiologist's numbers for comparison. When I can get to it, I'll see if I can find that initial report to see if memory serves me correctly.
I've not had another MRI since November 2012 which may seem reckless to some but I've had no symptoms that cause concern. Knock on wood...I still have my hearing... tinnitus is minimal. I meditate everyday with mantra and I still take honokiol everyday. I do not ever eat wheat or dairy and I do not use cell phones or other electronic devices near my head.
And no, I'm not aware of anyone else on this forum besides Derek (who inspired me to take the shrinking plunge) who has had shrinkage at this moment in time. That said I do feel it can be done but it takes a great deal of focus and commitment.
Hope this information proves helpful.
Best, Lisa M
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Makes me wonder. The 2.0 cm dimension may be intracanalicular component + IAC component (the ice cream and cone dimensions respectively). So a consist set of numbers would be 1.4 cm intracanalicular + 0.6 IAC or 2.0 cm if they are taken as one.
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As I said... none of this is fresh in my mind. Pretty sure the measurements I ended up listing after original diagnosis were all from the radiologist. This AN journey is different for everyone it seems. The initial shock of diagnosis can be a bit intimidating but collecting information is the best thing you can do. I'm sure there are new developments in treatment since 2011. I read a paper way back when that led me to honokiol which was being studied as a chemo therapy for ANs.
Keep us posted on your developments.
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Hi,
I'm new . I was just diagnosed in August . I'm in the watch and wait category too. I'm in Virginia and was seen at UVA. Since I have no hearing in my right ear , only what i call " white noise "and my AN is small my Dr. advised me to wait. Only issue I do have is some pressure. I live in the Mts and I think the higher altitude does affect me. I've noticed when I visit family , who live at sea level, my pressure seems to improve. Anyone else notice this ? Just curious.
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Just had my latest biennial MRI scan and pleased to report that after 15 years in the 'watch & wait' mode there are no changes in my condition which remains stable albeit the AN may be marginally smaller than the previous scan. Interestingly my otolaryngologist who has vast experience in skull base surgery and the management of ANs and who carried out my latest post- MRI consultation, stated that my original decision upon diagnosis to opt for conservative management (W & W) way back in 2002, notwithstanding that the size of my AN was then 2.5cm, has been vindicated. He further stated that in his experience as time progresses the rate of enlargement tends to diminish and ultimately stop. Accordingly he does not anticipate that in my case there will be any further growth which is mighty reassuring for me. He also said that he would advise anyone diagnosed with an acoustic neuroma to avoid surgery whenever surgical intervention is not absolutely necessary his simplistic reasoning being that the risks from surgery far outweigh those of conservative management.
Regards to all...
Derek
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Such great news Derek! Congratulations!
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Congratulation Derek. After 15 years it shrunk from 2.5 cm to 1.3 cm and maybe even smaller. I like your otolaryngologist's statement that "he would advise anyone diagnosed with an acoustic neuroma to avoid surgery whenever surgical intervention is not absolutely necessary his simplistic reasoning being that the risks from surgery far outweigh those of conservative management."
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LisaM / ANSydney...
Many thanks for your good wishes.
Regards
Derek
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Derek, you and LisaM are the only two on the forum that I know of that have had shrinkage.
(Most people get treatment before a 6 month follow up MRI, so it's hard to determine what percentage spontaneously shrink.)
I'm curious about factors that may cause shrinkage. So, I'd like to ask some questions to anyone that has shrinkage, or stable sized tumors.
1) Roughly how many hours do you sleep per day?
2) When sleeping, do you tend to sleep with your head positioned with your AN ear up, down or sleep on the back of your head?
3) When sleeping, do you tend to use 0, 1 or 2 pillows to elevate your head?
4) Is there anything that you can think of in your lifestyle or diet that is different than "usual"?
5) Do you take regular (or often) aspirin?
Thanks for your help.
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1) Roughly how many hours do you sleep per day?
i try for 8... doesn't always happen but that's what i try for. sleep with a white noise machine which has improved the quality of my sleep immensely. when first diagnosed my sleep was horrible and i was very stressed out.
2) When sleeping, do you tend to sleep with your head positioned with your AN ear up, down or sleep on the back of your head?
i toss and turn so who knows.
3) When sleeping, do you tend to use 0, 1 or 2 pillows to elevate your head?
just one
5) Do you take regular (or often) aspirin?
rarely take aspirin.
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Hi again ANSydney...
Herewith my personal response to your queries:-
1) Usually 6 to 8 hours overnight and occasionally a 20 minute nap early afternoon
2) AN ear up - my wife snores so this is one of the positives to having an acoustic neuroma with total single-sided hearing loss ;D
3) 1 pillow
4) Since diagnosis I have increased my daily exercise regimen, maintained a healthy diet including increasing my water intake, vastly reducing my sugar and saturated fat intake and most importantly I have constantly maintained an ultra positive mind set that I was always going to be the winner in this contest and the AN would be the loser.
5) I never take aspirin nor any form of additives or vitamin supplements
Regards
Derek
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Thanks Derek. Anyone else out there with a shrinking or stable tumor that would like to answer the five questions?
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Hi I'm new to this forum.
In March 2017 I had some hearing loss and tinnitus in my right ear. Was dx'd with a 4.0 mm x 3.5 mm AN near my cochlea. After being fitted with hearing aides my hearing is basically back to normal, and my tinnitus is all but gone ( I was on Klonopin for the T but am weaning off of that because it is some nasty stuff - and hoping that the T is really gone for good).
I'm at that decision stage- watch and wait - or surgery. I am 56 y.o. in good shape, work out regularly, etc. My concern about waiting is one doc (*the surgeon) told me if you watch and wait you might wake up one day and the hearing in that ear is just gone- overnite- even if there is no growth at all :o . I'm not so much afraid of losing the hearing as I am of losing the hearing and having the T return in my deaf ear. That to me seems like a nightmare.
The radiation doc I met with said radiation is not a good idea because its too close to my cochlea. He said that mine is so small it could have always been there and that W/W is probably just fine.
I've tentatively decided to have the surgery - mainly because it is a very small AN, and everything I read tells me I would have a good shot at saving my hearing- and I just want to get it out of me. I am actually going to the Mayo Clinic in Rochester MN next month for a second opinion on everything - i.e. radiation? watch and wait? or surgery?
After seeing some of the posts on here the W and W seems like not such a bad idea.
Has anyone on here heard of one that small?
Just curious about anyone's thoughts on watching an waiting on such a small AN- especially the bit about I might wake up one day deaf in that ear! (that more than anything makes me want to have the surgery- but there is a risk of losing the hearing there as well)
Thanks for listening!
P.S> - By the way I have one friend recently diagnosed with ALS, and another bravely battling pancreatic cancer- so when I look at the AN diagnosis etc overall I feel pretty lucky.
Paul
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Paul,
You have a very small tumor. In some European countries, you would be encouraged to go on W&W and 95% of those with tumors less than 2.0 cm in diameter go on W&W.
Your main concern appears to be keeping your hearing and avoiding tinnitus. If so, your best choice is observation; https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf
Surgery does not improve tinnitus and the abovementioned paper talks about hearing loss.
Why not go on a 2 year trial of observation with MRIs every 6 months. This will give you 5 MRIs to determine growth and enough samples to determine measurement variability. Get the MRIs on disk and examine your tumor on your PC. The disk comes with a viewer and measurement tools so you can have a good examination. Also, regular hearing tests would examine the effect on hearing.
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Paul... one can also wake up one day from surgery deaf in one ear. IMO...saving hearing with surgery is a gamble and the surgery itself is pretty invasive.
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Hi Derek and all you others on the W&W list
I too have a 2.7 AN - am 69 years and other than hearing loss in my left ear (no tinnitus) I have no other symptoms.
One surgeon who only saw the MRI insisted that surgery should be done. Two other surgeons who met with me recommended that with my age and me showing no symptoms, I should wait, do an MRI every 6 mos and if it grows or I start showing symptoms, then I should consider the next step. The surgeons said that in my case, I will be going into surgery having no adverse symptoms but will definitely have some symptoms when I come out of surgery. I may be lucky and the tumor may not grow for 5 years or 10 or even 20 and in that case I'll have a good quality of life. If it does grow and I need surgery, ---at least I would have had - x- years with no problems. I thought that was a good option! I am a very active grandmother and want to enjoy as much time doing crazy things with my grandchildren.
I am from India and am doing some Ayurvedic treatment which I hope will help. Been taking grated raw turmeric root with a glass of water each morning as soon as I wake.Go to gym 5 days a week, have a trainer 2 days who pushes me and also has me doing balance exercises. So I opted to watch and wait until it either grows or I start showing symptoms.
I just saw another surgeon who tried to convince me that I needed to do surgery - giving me all the possible reasons why waiting would create more complications if it grew. However after I told him that I was willing to take the risk of it not growing - he had a complete 180 degree turn! Said that it is a good option to probably wait.
So Derek and the rest of you, I plan to follow your routines as much as I can. Thank you so very much for your posts.
Regina
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Hi Regina...
I have read up on your previous posts and I agree totally with your ultimate decision to stay in W&W mode. At almost 69 years of age with no apparent symptoms other than single-sided hearing loss it makes complete sense based upon the medical advice which you have obtained, to avoid seemingly unnecessary high risk major invasive surgery and to monitor your situation via regular MRI scans. There is every chance that the growth rate of your AN has substantially reduced and indeed may have actually ceased.
Continue with your excellent healthy diet / exercise regimen and hopefully you too will beat the enemy within :)
Very best wishes
Derek
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Congratulations Regina on arriving at a strategy. I second Derek's comments.
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Hi,
I was recently diagnosed with a 2mm left AN and while the two doctors I consulted both recommended Watch & Wait, it is surprising to me that there has been any shrinking of the tumor from "living right". What do you think impacts the tumor causing it to reduce in size? The amount of water...change in environment...exercise?
Thanks,
Sharon
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Sharon, I'm having trouble understanding the tumor reducing in size. I see that it is 2 mm (very small) at the moment. How big was it in the past?
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A fellow forum member 'Mickey' who has been a regular contributor ( particularly supportive to this thread ) over a number of years has not posted since mid 2015. I recently sent him a couple of PMs but have had no responses and the forum moderators have no knowledge pertaining to his absence. Just wondered if anyone has any info relevant to 'Mickey'?
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Mickey was "Last Active" on October 01, 2017, 05:56:40 pm, so just a four days ago.
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Mickey was "Last Active" on October 01, 2017, 05:56:40 pm, so just a four days ago.
Thanks for that info...when I last checked on 30th September 2017 his last activity was July 2015. Hopefully he will surface in due course. :)
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Hi everyone.. I'm sorry I havn't posted in a while just had a little burn out.... Just got away from everything .
In any case Im doing fine "stable for around 10+ years now leading as normal a life as I can. All is good at 69 + just go for MRIs + check up every 2 years now unless I notice a change. Derek who started this board one of my heros along with so much other valuable information from everyone.... Let me catch up on a bit and will make more comments in the future. TY Mickey PS Glad to see W+W Brigade strong option as ever...
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Hi Mickey...
Good to know that you are ok... welcome back!
Derek
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It's always good to learn that things are going well for a member. I'm hoping I'll be at a similar point one day. :)
So often it's the 'bad stuff' - understandably - that features on forum pages. Here in the UK the website forum pages of BANA are little visited anyway compared with those of ANA. Facebook seems to have seduced potential website members.
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Hi Derek,
Thanks for your encouragement. I just begin the journey. Baby steps... Baby aspirin steps.
Daoisthere
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Hi daoisthere...
I have read your previous posts and your essential thorough research has undoubtedly had a major impact on the decision to choose conservative management of your AN. Albeit I have not personally taken aspirin I agree with your decision based upon the medical evidence which you outlined in another thread. Very best of luck on your AN journey.
Derek
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Hi Derek...
The wonderful support from this group is just unbelievable. The anxiety was really having an impact on my tinnitus/outcome in general. Now that I have made a decision, I can already feel the effect it is having on my emotional outcome. I know that things don't always workout the way that one plans on. But at least I am having my say on the matter.
Peace,
Daoisthere
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Greetings Fellow W&Ws
I'm not on the forum much anymore but someone PMd me today for an update and asked that I post to the forum. Here it is short and sweet:
Original diagnosis 4/2011. Had my first MRI since 2012 last December (2017). Tumor is stable. Reduced by half in size from original diagnosis 4/2011; no change since 3/2012. I still take 3 capsules of Honopure each night and meditate with mantra daily. I do not hold a cell phone to my ear, use the speaker phone and use the cell sparingly. I remain gluten & dairy free and enjoy red wine. Had a bout of dizziness 10 days after MRI in December which caused some concern but that has corrected itself and may have had nothing to do with the AN.
This thread started by Derek gave me the courage to wait and watch. I am eternally grateful for having found this forum. Life is good!
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Hi Lisa...
Great to know that you are doing so well and that your original decision to 'wait & watch' was the right choice for you. Hopefully you will continue to maintain your progress as you are certainly doing everything possible to beat the 'enemy'. I am now into my 17th year since diagnosis and my AN is now rarely in my thoughts.
Regards
Derek
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Was wondering if there is anyone on the W&W list that has a tumor size greater that 4cm?
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Hi, I live in West Texas and was diagnosed with this AN in March 2018. We have since met with Neuroontologist; Surgeon and Radiologist in Dallas at Southern Methodist Medical Center in May. This group of Doctors were great and completely honest with me concerning all options. The wait and watch option made the most sense and with prayer this decision left me in perfect peace. Derek, I have enjoyed reading your journey and I agree- we must take care of ourselves. The forum has helped me learn so much about this tumor and so many brave people that are also on this journey! I will continue to exercise to help me maintain my balance, and the hearing loss I am dealing with and the constant ringing I am adjusting too.
Thank you all.
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I figured I send a ping up here.
Pretty soon I will turn 3 years since officially diagnosed.
Pretty much W&W status for now and indefinitely.
Am told to check back in 2 years after my September MRI - no growth found.
Tinnitus - yes.
Pretty much a part of me now.
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Just an update for you re my recent biennial MRI result which indicates stability with no increase or decrease in dimensions of the AN as I commence my 18th year since diagnosis.
Best Regards
Derek
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Congratulations Derek,
You are our Watch and Wait Hero and inspire many of us to hang tough. It is not easy to wait these things out. Uncertainty is so stressful. Do you still have tinnitus, or has that pretty much stopped for you at this point? Do you retain any hearing in your AN ear?
Cheers,
M.A.
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Congratulations Derek! 18 years since diagnosis and your tumor over the years has shrunk from 2.5 cm to 1.3 cm and with resolution of all symptoms except for hearing. Of course, intervention will not improve hearing. And usually accelerates any hearing loss.
That is great. I hope to be in that very limited club in a very limited club one day. In the mean time, 2.5 years after diagnosis my tumor is stable. Shrink you scoundrel!
Derek, you're an inspiration for those that want to see what happens next rather than just treat first and ask questions later.
Conservative management of vestibular schwannomas: third review of a 10‐year prospective study by Hajioff et al had 22% of tumors shrinking (16/72). I wonder if long term the percentage of tumors that shrink increases. After all, they would have a hard time establishing a (precarious) life support system.
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Hi M.A.
Many thanks for your kind words. Fortunately my tinnitus completely abated several years ago but total hearing loss on my affected right side occurred within a few months of diagnosis way back in 2002. Single-sided hearing has never been a problem for me throughout the ensuing years and it is truly amazing how the human body adjusts and adapts to the balance and audio problems associated with the AN condition.
Regards
Derek
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Hi there ANSydney…
Your encouraging comments are greatly appreciated. I am convinced that many of those who are newly diagnosed could also become long-term 'Watch & Wait' candidates if they did not unnecessarily rush into early invasive treatment options subject of course to the all important caveat of regular MRI scans and acting upon the advice and guidance of a consultant in whom they have complete confidence.
Regards
Derek
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The comments in this "Watch and Wait" category has tremendously raised my spirits. Thanks to all who posted such positive comments. You have given me hope for a future better than I been imagining. I was ready to go on hospice and let morphine ease me on down the road. You guys are awesome!
Deb
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Hi Derek - how did you self reduce your ANA? Interested in learning more.
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Hi there Judy...
My antecedent history of living with my AN is well chronicled in the 'Top Tips' thread. In a nutshell there was no 'magic bullet' for the reduction in the dimensions of my AN. I made the decision to rely on conservative management of my condition after very lengthy research and medical advice following my initial diagnosis of a 2.5cm AN in 2002 aged 57 years.
I have since maintained a healthy lifestyle including moderate exercise, a healthy diet, and increased water intake. In February 2022 I will be celebrating 20 years since diagnosis as I head towards my 78th birthday in April. Throughout the past two decades my AN has reduced in size to the current 1.3cm and has been stable for many years. I now have MRI scans with contrast every three years and my only symptom is total hearing loss on my affected right side which is of no problem to me.
Treatment options are of course a personal choice but from the outset I resolved not to have any form of invasive treatment if I could possibly avoid such, based upon regular MRI scans and the advice of a neurosurgeon in whom I have complete trust. In my opinion any form of surgery runs a greater risk than conservative management. I have always maintained a positive mindset in that I have never accepted that I have a 'brain tumour' per se but that I have a small benign growth on my audio nerve with consequential hearing impairment. I am now at the fortunate stage whereby my AN condition is no longer a prominent factor in my life and I have periods of many weeks when it does not even enter my thought process.
Overall this strategy has worked for me and I am sure it could work for many others.
Best Regards
Derek
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Hi Derek. I like your strategy. So glad it's working for you. Thank You so much for sharing!!
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I had my first consult today with UCSD Dr Friedman. It’s a relief that he recommends watch and wait, and to get a second MRI in October and as long as I don’t get any new symptoms I can wait till October for the next MRI. I like the conservative approach. He said it is a 15mm tumor so still in the small range. As for things to do: I haven’t been walking 4 miles a day but now at about 1.6 miles a day. The tips here are very useful.
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Was wondering if there is anyone on the W&W list that has a tumor size greater that 4cm?
Hi Abetpds, yes! i'm in the watch and wait with a 40mm sized VS i barely have any symptoms / complaints besides 45db hearingloss and very subtle tinnitus and a nasty headache. Maybe it has to do with my ages since i'm only 29 y.o so pretty young for a VS that size.
they concluded my quality of life atm is higher then it could possibly be after surgery, i've been diagnosed in november.
What's the size of your VS, and what kind of symptoms do you experience?
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Derek do you think serrapeptase might be useful? Am on a forum that talks about this re fibrin and was thinking although I use bromelain serrapeptase might be better. It works mainly on fibrin. I am going to try this.
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Hi 'mwatto'...
I have never taken any form of supplements following my AN diagnosis some 21 years ago and prefer to rely on natural aspects akin to a healthy diet / lifestyle and regular exercise. However this is my personal and somewhat sceptical view but I can well understand anyone who seeks anything that will have a positive effect on dealing with the AN condition.
With specific regard to serrapeptase which is believed to be useful as an anti inflammatory, I note that prolonged use in excess of 4 weeks can be dangerous resulting in joint pain; muscle soreness; nausea / stomach pain; poor appetite; skin reactions a cough and blood clotting particularly if blood thinners are being used. I would therefore personally not be inclined to want to take such medication.
Regards
Derek
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Thanks Derek am interested in reducing fibrin as the AN gives off proteins as it dies. Tumbleweed used bromelain but serrapeptase is another option.
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Hi I bought honopure and the capsules are pretty large. Did it help with sleep? I wrote to the manufacturers and they said it doesnt interact with anything but I still wonder if you had any insights into usingthis product. Am working on blood thinning and this (Like Losartan) is good for that. Working on fibrin so bromelain and serrapeptase also. How are you going now? I had CK 4 years ago.
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The way you reduced it is amazing.
As my AN is 1 mm x 2 mm, I must admit I wouldn't mind to be able to do the same...
Apparently, you did "nothing much more" than eating healthy, drinking a lot of water, cycling, walking a lot, doing some relaxation and avoiding smoking and alcohol?
Which is already very considerable and very brave, considering you had absolutely no guarantee of any results.
I'm already doing absolutely all of it, except walking 4 miles a day. Which is something I really dislike. Of course I would do it, if I could be sure it would make a difference. Anyway, I'm doing some daily sport instead, something like 20 minutes in an intense way.
Your optimism maybe also did something. It's another element too difficult to reach for me.
Do you think it would be interesting to take some supplements or daily aspirin in my situation? Apparently, you never did?
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Hi 'swissguy'...
Sorry for the delayed response. Whilst as you know, I have never taken any form of supplements or aspirin I see no problem in you taking them notwithstanding you are acting upon medical advice particularly so with regard to the daily use of aspirin. In my opinion anything that you believe may be helpful in assisting you with dealing with your AN problem is worth a try having due regard to the all important caveat of acting upon reliable professional medical advice.
Regards
Derek