Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 226493 times)

Jim Scott

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #270 on: October 10, 2013, 08:18:28 am »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #271 on: October 10, 2013, 12:31:03 pm »
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 
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #272 on: October 10, 2013, 10:01:28 pm »
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
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #273 on: October 26, 2013, 08:06:26 am »
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
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #274 on: November 02, 2013, 11:42:13 pm »
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
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

MG

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #275 on: November 23, 2013, 12:27:27 pm »
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
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

cathyroe

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #276 on: November 25, 2013, 11:41:02 am »
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
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

logitech23

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #277 on: December 02, 2013, 01:12:07 pm »
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.

TexasSprinter

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #278 on: December 02, 2013, 10:21:19 pm »
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.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #279 on: December 03, 2013, 08:33:45 am »
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
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

logitech23

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #280 on: December 03, 2013, 03:56:29 pm »
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.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #281 on: December 03, 2013, 09:56:54 pm »
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

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #282 on: December 04, 2013, 06:45:44 am »
'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 

Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #283 on: December 13, 2013, 07:39:23 am »
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



 
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #284 on: December 13, 2013, 10:31:51 am »
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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