ANA Discussion Forum
Archive => Archives => Topic started by: gregorywannabe on June 15, 2005, 02:32:44 am
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Hi everyone
Was just diagnosed with AN this week. I quick google and here I am! Seems like a great forum. I have been looking around and have learnt a lot already but still
have a few questions.
First a bit of background. I'm male, 44 and generally fit and healthy. I live in Perth, Western Australia.
My AN is quite small 4x4x5mm. Only real sympton is hearing loss in the left ear. Other possible symptons go back
to 1995 when I had a CT scan after being investigated for dizzy/blackout attacks. These originally happened when jogging so i put it down to running too hard but then
had the exact same attack when driving to work. A few seconds before the main spell I can sense it coming, almost a deja vu feeling and dreamlike, disconnected from
reality feeling. CT scan showed nothing. Still occasionally have one, maybe only once per year for the past few years and less severe. Maybe nothing to do with AN?
Next thing was a CT scan in 1999 because of tinnitus in the left ear. Nothing showed up. Both consults with a GP. Then 6 months ago got a referral from GP to an ENT
because of the hearing loss that had been getting gradually worse over the past 2 years. Finally got in and had an MRI a fortnight ago and the ENT called me in this week
to let me know. He's recommended just monitoring it for now and I will have another MRI in 12 months.
Is there any point in having it surgically removed now while fit and healthy? Rather than if/when it grows larger and needs to be removed at some later stage?
For that matter, how fast do ANs grow, or is it quite different for different people? I guess I'm thinking of a scenario where in 20 years time it must come out but
I'll be 64 by then and perhaps not as good a surgical prospect? Or is there no way it will grow that slow?
Anyway just a few things I was thinking. I'll be keeping tabs on this site as it seems a great resource. I'll keep googling for more info. And I'll check out any local
Oz or West Oz support groups. It will be years I imagine before any surgery but it's still good to hear of everyone elses experiences here.
Cheers
Greg
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Greg
There's another Oz person on this forum if you can find her. Name is Vera. She may have hospital information.
In general ANs are very slow growing at about 1 mm. per year but sometimes they do not grow. You are getting a little older so the tendency for growth is reduced.
If surgery were necessary, 64 would not be too old if your health is well. I wouldn't have surgery w/o symptoms. Treatment often causes the most damage.
Take care...
Russ
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Thanks Russ.
The more I read about post-op problems and stats of people suffering problems the more I keep thinking "just wait and see".
This is certainly what I'll be doing for the next 12 months. At the moment the "balance problems" issue is the one that concerns me most.
I already suffer acute motion sickness (and have since the day I was born). Anything that moves will make me nauseus and vomit, apart from
when I drive myself. When travelling by air or out fishing in a boat, etc. I just taken tablets and I'm fine. However, having suffered motion sickness
I would dread the notion of living with something like this 24/7. My understanding of the radiotherapy/surgery options is that there is a chance of
keeping the "balance organ" intact with everything except translab. Is this correct?
Anyway, still researching and finding links to OZ. Have found some already, still looking.
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I"ve been newly diapnoseed with a small AN.
We live in St. Louis and are very worried
Doctors are runnung a lot of tests.
Our decesion will need to be make soon.
Biggest problem is balance
Liooking for answers?
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If your AN is small you probably do not need to be in a hurry to make any decisions. Slow down, do your research. There is tons of info on the internet that you can coordinate with the info your doctors give you. Don't jump into anything to quickly!
Best of luck,
Karen
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As a previous poster said, your AN is small so you have time to research.ÂÂ
There is a St. Louis area support group if you are interested in talking face to face with patients, both pre and post treatment. Go the the ANA home page and there should be a link to area support groups.
The current ANA president, Agnes Garino, is from Kirkwood and has a short article in the current ANA notes.
Jeanne
GK 1998
Missouri
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Well, I'm baaaack. Just had the 12 month follow up MRI and referral to another ENT who taught my original ENT and has dealt with hundreds of ANs.
Good news is that the AN hasn't grown, still a small 4mm bugger. Bad news is that my hearing is even worse, with the latest tests showing not much servicable hearing. I could tell this just from everyday experiences anyway. He mentioned that it was unusual for such a small AN to cause so much hearing loss and said that it may well be a cochlear neuroma. Semantics to some extent as I don't think it affects the solutions in the future. He was quite willing to discuss both surgery and radiation as options, and said that there was NO advantage to performing surgery now when it was small over waiting until it was up to 1cm in size at which stage it starts creeping out of the IAC. He said that he would go trabslab if I chose surgery as my hearing was pretty well buggered anyway.
We're going for the wait and see again, and will have another MRI in 12 months to see how things are progressing. I'm still not super keen on surgery and will ask for a referral to a radiation oncologist next time I think just to see what they have to say.
Chances are small but just in case there's another West Aussie out there his name is Stuart Miller. Not an advert but when googling him I discovered he is a keen photographer with a website and some really godd stuff, particularly from the Antartic (http://www.stuartmiller.com.au/).
I keep dropping in to the forum for a look see so good luck to everyone and thanks for all the info.
Cheers
Greg
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Let me guess here - your`e Austrailian ? - no worries !
Anyway the pro`s and con`s of surgery/treatment now, or later, are
almost a medical degree in their own right
All I would say is - it may take years to grow to 1cm or more
There maybe big changes coming in youre life
- but you may have some control over exactly WHEN they happen.
You maybe off work for a while - in recovery for a while
It depends on your life situation/circumstances if now is a good time
or waiting a year or two makes more sense
You can make plans, get fit, pay off the debts, in the meantime,
only you can really decide on that one.
Finally, generally, the younger you are the easier/quicker you adapt/recover etc.
Oh and you guys did quite well in the World Cup !
Best Regards
Tony (Pommie)
PS You see, we do forgive and forget !
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One of the major advantages of "watch and see" is to be able to consider future treatment opportunities. Some of the treatments for AN are in current followup, reaserch and development so the more the data is available, and the more the treatment is optimized, the better are the chances to minimize treatment side effects, and that also includes surgery. I would strongly consider that. I wish I could but my little baby is already 3.3 cm... :-[
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G'day Tony and Pablo, thanks for your thoughts.
Yep, it's not just a medical decision. Other things come into consideration. I have a boy and girl, 17 and 15 and it would be good if they are "out of the way" before opting for something like surgery. What I mean is finished high school and exams and into the next stage of their life. One less thing for them to worry about for the next couple of years. I also take the point about recovery being better when you're younger fitter. I'm pretty confident that won't be a problem as I'm pretty fit and intend to stay that way. I still play Aussie Rules footy (much to my wife's complaining!) and mostly manage to keep up with the guys 20 years younger. The embarrasing bit is playing with the sons of friends I used to play with years ago! Also do lots of running/swimming/golf. As you mentioned there are also advances in this area so maybe in a few years there will be other options? At the very least the surgeon will have done many more AN operations in the meantime!
And as for the World Cup, we wuz robbed! :)
Cheers
Greg
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Hi Greg:
I have been diagnosed of an AN (very similar in size as yours 5mm) a month ago. I went through the same dilemmas as you are going through now. All my doctors were of the opinion to wait and watch. My only problem is tinnitus. AN was discovered by accident. I have perfect hearing now. So the doctors have the opinion that by waiting the only thing I might loose is hearing, which in anycase can be a very possible side effect if I go for surgery.
As for balance, I am also an acute motion sickness person since I was born. However, because of my job I travel a lot and I still don't know how I manage them while continuously hating flying!!
My balance sometimes tips me off when I am very tired (which I am most often as I have the bad habbit of pushing myself). But, don;t worry very rarely we are in a place where we have nothing to hold, if required. If the balance cripples you then ofcourse there will be no choice left other than surgery.
I am 37yrs and I also had the same questions if not now then when to have surgery. I guess, that's future and my doctors gave me lot of confidence by saying go and do what you have to do as long as you can. Worry about it when it comes. My next MRI is after 6 months.
So I have convienced my self that I have at least another year of quality life and I should not let it go!!! So I am definitely enjoying the World CUP, having least amount of sleep, working hard for my career (my doctor dosn't believe that surgery will effect my career drastically, even if I become deaf and asked me not to think about it!!) and enjoying late nights!!!
cheers,
Anamika
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Greg, I have led a health conscious lifestyle...kept up with routines and checkups. I've had motion sickness issues for most of my adult life. I developed tinnitis and hearing problems about 8 to ten years ago. (I swear I could hear buzzing in my head when I was a child) We discovered my 2cm AN in October, 2005. I had surgery 10 days before my 64th birthday, 2005.
I am in fine health, and came through translab surgery well. There was nothing unusual about my recovery. I have a few remaining issues to adjust to since the surgery, but these are not life altering. At 2cm the tumor had taken most of my balance and 65% of my hearing anyway.
My opinion? 44 is a great time to enjoy life. Enjoy your kids, today. When you are 64, they will be there to help you through the wobblies.
And remember BAHA is improving every year...something good to look forward to.
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Greg, One question. Even though you have "not much serviceable hearing", can you still tell where sounds are coming from?ÂÂ
If you can still identify sounds by direction, the hearing is still serving you a bit. My test results that were labled "not serviceable" referred to word recognition (mainly beginning and end consonants). But at 35% hearing I was getting plenty of input for direction. Unless you have other symptoms that are compounding the need for treatment, you can still enjoy that ear, and your hearing loss is not as profound as "deaf", (as in post translab).
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I am just past one year watch and wait for a small AN. I found it after sudden hearing loss 80db loss 64% SRT. Over the last year my hearing has gotten much better (up to 50db loss and 88% srt) but some of my other symptoms have gotten worse. I started having mild balance problems 5 months ago. My one year MRI showed “no significant change�.
My balance problems are visible in some of the VOR tests. For now I plan to continue to watch and wait but when to treat is less clear. My original thought was to wait until I showed growth and then start planning, I figured my hearing was pretty shot what did I have to lose by waiting . Now that my hearing has gotten better I am starting to wonder if I should do something sooner to save my hearing, knowing that any treatment has a 30% chance of taking my hearing. No easy choices.
john
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To those of you considering treatment. Tinnitis usually stays with you . I still have tinnitis post op. Now I have the tinnitis hummmm in the background (which is the constant I've lived with for 10 years) and an additional hisssss at the end of most sounds (a result of the one sided hearing). I have heard others report they have a hiss coming from their deaf ear. But I believe what we are hearing is in the good ear...There again pointing to the problem of identifying where sound is coming from with SSD.
I have a happy, full life. I just get tired easily in a room full of noise, talkers, noise makers. I can't descriminate any more.
If patients who have had GK, Novalis, etcetera could report the benefit of loosing the tinnitus...? Now that would be something.
What I still miss most in the old me is hearing directionally. Maybe Entific (BAHA developers) will come up with an answer.
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actually I find my direction ability is worse with my BAHA !!.. without the BAHA I spin my head and take a good guess because it might be louder in one direction ..
with the BAHA .. I hear in all directions, so my "guesses" are even worse... but if you ask me .. its a good trade .... ;D
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Hi Greg and others with small ANs,
I began losing my hearing in the Fall of 2002. I was diagnosed in the spring of 2003 with a 7mm AN. Doc recommended the watch and wait. 2004 MRI showed no growth. Skipped the 2005 MRI because of sickness in the family. 2006 MRI showed 13mm, almost double in size from the 2004 MRI. Still small compared to others, but the doc said it was time to do something.
Had retrosigmoid surgery on 05/31/06, came home four days later. Surgery went extremely well; no damage to hearing, balance or facial nerves. I have had basically no complications and no side effects. My hearing remains the same as before surgery (cannot hear someone speaking on my right side unless they are loud). My balance before was only off when I moved too fast or when taking the first step up or down stairs. I still have an occassional off-step that I have to right myself from. No dizziness or headaches. I have occassional throbbing on the right side of my head when I bend over or when I sit up from a lying position or stand up too quickly and fortunately it only lasts for a minute or so.
Was doing so well that I went back to the doc at 3-weeks post-op and he released me to go back to work. I went the next day. I do have an office job doing mostly paperwork and computer, no strenuous stuff. I just celebrated my 45th birthday and I am not a real active person in regards to exercise; I am overweight, but in good health otherwise. I am overactive in community support events and organizations, so I am a busy person.
I just wanted to let you folks know how well my surgery went. I was expecting all the possible side effects from the surgery and I realize that I am truly blessed not to have had any problems so far. Try to have a positive attitude and a great support group from family, friends, church family, neighbors, coworkers, etc. I am glad I didn't wait till the AN had grown larger. I am also glad to have this part behind me and back to a somewhat normal life. There is no hurry when the AN is small, but from my experience, it was to my advantage to get it out while it was small. I have no regrets with my choice of action.
Best wishes to all,
Mtn. Gal
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The more I read about post-op problems and stats of people suffering problems the more I keep thinking "just wait and see".
This is certainly what I'll be doing for the next 12 months. At the moment the "balance problems" issue is the one that concerns me most.
I already suffer acute motion sickness (and have since the day I was born). Anything that moves will make me nauseus and vomit, apart from
when I drive myself. When travelling by air or out fishing in a boat, etc. I just taken tablets and I'm fine. However, having suffered motion sickness
I would dread the notion of living with something like this 24/7. My understanding of the radiotherapy/surgery options is that there is a chance of
keeping the "balance organ" intact with everything except translab. Is this correct?
Anyway, still researching and finding links to OZ. Have found some already, still looking.
Every AN patient/case is different. Don't let some post-op 'horror stories' scare you away from necessary surgery to remove your acoustic neuroma tumor. Even if you have any balance 'issues', post-surgery, they usually resolve in time, especially with some rehab. That's if you even need to have AN surgery, which, in your situation, may not be the case at all.
With a relatively small tumor, radiation is still a viable option for you and, as radiation treatment is non-invasive, this method of tumor removal, while not totally free of side effects, drastically simplifies recovery for most folks.
I wish you well in your decision.
Jim
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Thanks everyone for your stories and advice. Ananika - the surgeon did say that in his experience there was no problem with motion sickness due to the AN or surgery, if you had it before you would still suffer, if you didn't then it you still wouldn't. Boppie - yes my main hearing problem is speech recognition, rather than complete loss of sound, so that is certainly something worth considering, i.e. a translab would mean total deafness and a loss of perceiving sound direction. At this stage I am still leaning towards radiosurgery BUT that's without even having a consult with a radiation oncologist yet!
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Gregory, At this point I don't suffer from the car/air sickness and related sensations post-op translab. I too suffered motion sickness most of my adulthood. However, my sickness usually reached my lower intestines.ÂÂ
After translab I was released on the morning of the fifth day, rode on the car passenger seat 115 miles to get home and had not one problem with motion sickness. I drove around the block at two weeks post op. I have ridden in the car and flown Houston to Chicago both ways in the past 6 months and haven't had a motion sickness problem.ÂÂ
My balance pre-op with 65% hearing loss was fair. The drunk test walk was fair for my age. Post-op I am 98% back to my normal. I do experience some dizziness when I first get up in the morning. This smooths out in an hour or so of routine moving around. Considering my age I am balancing very well.ÂÂ
I read that you have some hearing left, and if I were young like you, I'd opt to preserve it regardless of predictions about dizziness for either treatment method. I'd base my treatment choice on hearing preservation, if the odds were good enough. As I said before, hearing directions is what I miss most. Right now, I hear everything coming 100% from the good ear side. I never know where a hidden sound is coming from. I must see a speaker's lips moving to know that someone is addressing me. Sure, glad my husband isn't a ventriloquist! ;D
I have talked to surgery patients who vomited a lot in ICU and I have read of some who had no sickness. Me? I vomited a tiny bit once in ICU. Go figure! me with the motion sickness history. The post op vomiting is about the anesthetic and the drugs they must give you. But I think motion problems are not related to the AN per se. I believe you are born with a predispositon to it. Does your parent have it? Does any sibling have it? As a child I loved a huge farris wheel. For the past twenty years I have stayed off them, make me totally disoriented and falling down sick. I think I developed the problem and was predisposed to it. My Mother always rode in the front seat. My little sister gets terrible motion sickness.
Sorry I rambled.  :)
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I'm back yet again! Had another MRI, still no size increase from the original 2 years ago (still 4mm) so now waiting 18 months before the next MRI.
Hearing on that side is about another 10% worse.
I've gotten used to the "watch and wait", mainly by trying to ignore it! A bit hard when I'm reminded every day by my bad hearing and very bad
speech discrimination on my left side. Great for sleeping when there's noise around though! :)
I figure that every year I can wait that's another year that techniques, both surgical and radiological, can improve.
I keep dropping in here occasionally to catch up with things so good luck to everyone else with their journey.
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Good for you Gregorywannabe!!
See you again in 18 months if not before.
Kathy
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Good job Greg...watch and wait works, don't you think. My doctor in Boston has been watching someone for 17 years!! Yes, it's true. The person is in their 60's now I believe. So I think you have many years to do this if the growth remains like this. Maybe you may never have to do a thing, wouldn't that be nice. Congratulations and good luck. See you in a year and a half. Holly
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Thanks for the thoughts Holly and Kathy. Yep, I'll catch up again in a year and a half. Hopefully by then I will have done my first 1/2 marathon, full marathon, and
1/2 ironman. That's the plan anyway! ::)
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Hi Greg,
Good to hear that your AN is still small and that watch/wait is still the option... sounds like things are manageable for you right now and send you wishes for continued wellness........ Please also keep an eye on the new discussion forum for "watch/wait" as there are folks there that can also learn from you and possibly share insight as well......
Be well,
Phyl
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Thanks for the thoughts Holly and Kathy. Yep, I'll catch up again in a year and a half. Hopefully by then I will have done my first 1/2 marathon, full marathon, and
1/2 ironman. That's the plan anyway! ::)
IRONMAN ???!!!! Wow...now that's impressive even at half. I've been to the Ironman in Lake Placid (not for aqthletics, not me! but because my husband invented the Balance Bar and there was a booth) and I think it's one of the most impressive sports events. You must be one heck of an athlete to accomplish that. Good for you...I hope you can wach and wait forever! Holly