why wait?

[Rusty123]

I was diagnosed with a 4mm AN about two months ago.  Finally got to see a neurotologist yesterday at Vanderbilt in Nashville, TN.  Since my symptoms are minimal (fullness in ear, some hearing loss), and since I still have very good hearing in the affected ear, and because of the risks of hearing loss and other complications from surgery and radiation, I was advised to wait and get another MRI in one year.  I have read that the Middle Fossa surgical approach is best for preserving hearing.  I'm wondering if there's a surgeon or clinic somewhere that has a good track record of hearing preservation after surgery with AN patients with small tumors like mine.  I'm 57 and plan to stay active as a pastor until I am at least 85 (ha!!  Actually, I'm not really joking.)  I am at peace with W+W (at least for this first year), although I want to be pro-active if there's another good option.  We will probably get a second opinion.  The Dr. at VBilt admitted his approach was conservative.  (I like that.)  Maybe I could get another opinion from one that is less conservative however?  Any ideas from anyone?

Thanks for taking the time to read this.

[arizonajack]

Welcome to the club that nobody wants to be a member of.

Couple of things you need to know about ANs.

They grow. They grow slowly with most people. While the grow they destroy the nerve that they are attached to.

You've lost "some" hearing with a 4mm tumor. In 6 months you will very likely lose more hearing and in a year your hearing could be totally gone while the tumor is only 7mm or 8mm.

My AN side hearing was 90% gone when my AN was 3mm x 4mm x 9mm and was completely gone 6 months later when my AN was 4mm x 4mm x 11mm.

Granted, I'm just one story and you'll want to read a lot more about the experience of others.

But I suggest you do your research and see a few specialists ASAP.

Unless you don't mind the distinct possibility of completely losing your hearing on the AN side.

[Rusty123]

Thanks!  I appreciate the advice!

[Mickey]

Hey Rusty! I was 58 years old diognosed with a .12x.06 AN.  I`m going to be 65 years old and am feeling great with next MRI due in a little under 2 years from now.  Stable... if not better. I`m not going to say much but do go over to the W+W brigade forum to help you get an idea of this form of treatment which has gone great for me. Best wishes, Mickey

[PaulW]

Hi Rusty,
Your Tumour is currently very small, any smaller and they probably would not have detected it.

Many of these smaller tumours can remain stable in size for many years.

Acoustic Neuroma Surgery is complicated and poses a significant risk, and with such a small tumour, I think you need to question whether the risks of surgery are warranted in your situation.

Any form of treatment (W&W can be considered a treatment too) carries a risk.

Statistically W&W and Gamma Knife are the most commonly followed strategies for small acoustic neuromas.

[nftwoed]

Rusty;

   Though I'm not usually a watch and wait fan ( Some Drs. will watch and wait one to total deafness ), you do have age in your favor, BUT, would say a minor hearing loss tends to lead to a worse hearing loss ( often, w/o AN growth )
   Also, the better the hearing going into surgery, generally means better hearing coming out. Some, are more, or less fortunate.

[GiLoSD]

All,
I appreciate Rusty 123's question because I'm in nearly the same situation: small tumor, negligible hearing loss, moderate (in my opinion) balance issues.  My AN is 5mmx5mmx7mm.  My first consult with the otoneurologist and neurosurgeon is next week. My hunch is that they will recommend W & W.  I guess I'm ok with waiting 6 months or so, but I will mointor my hearing and balance closely. I'd rather have it out before I lose significant hearing or start losing my balance and falling.

Any other thoughts, those of you with more AN experience and wisdom?  Thanks. This is my first post.

[Derek]

I was diagnosed in 2002 with a 2.5cm AN and advised to have early microsurgery or stereotactic radiosurgery. Following extensive research my ultimate decision was to opt for the alternative conservative management ('watch & wait') form of treatment. I am now into my 12th year of 'watch & Wait' and can honestly say that my decision was the correct one for me.

Over the ensuing years I have adopted a very healthy lifestyle involving regular exercise and a sensible diet etc all of which is chronicled in the 'sticky' thread 'Top Tips For The Watch & Wait Brigade'. This has resulted in a welcome weight loss of some 2 stones; my AN has reduced in diameter to 1.3cm and now into my 70th year, I am fitter and healthier than I was prior to diagnosis. I have no balance or fatigue problems; my tinnitus has abated and my only legacy is total single-sided hearing loss which does not cause me any problem whatsoever. Indeed, just like my earlier balance problem at diagnosis, the brain also tends to compensate and adjust in time to single-sided hearing loss.

Whilst acknowledging that there are risks attached to each of the three available treatment options (microsurgery / stereotactic radiosurgery / conservative management) my last resort would be any form of cranial surgery or radiation if it can be avoided. In my opinion conservative management offers the least risk factor and is the ideal choice notwithstanding that you have regular MRI scans and act upon the advice of a consultant in whom you have complete trust and confidence.

Always remember that even though you may opt for excision or radiation, just as with conservative management, you will always require periodic MRI scans to check for any re-growth which in itself is a form of 'watch & wait.!

Regards

Derek

[terisandler]

I was dx with my 18mm x 11mm x 14 mm AN last March.  The ENT arranged consultations with both a radiation oncologist (to discuss CK) and a neurotologist to discuss surgery.  He told me that one option was to W&W (he referred to it as doing nothing but I know now it is actually doing something).  The same doctor advised against doing nothing because I was "too young" - quite flattering since I was a few months away from my 61st birthday.

I saw the radiation oncologist first and he explained the process in detail and answered the questions I had.  I had already joined ANA, started research, and had spoken with a few people on the WTT list.  I saw the neurotologist and he (surprising to me) suggested W&W.  I was leaning toward CK before this appointment and this suggestion, coupled with the fact that I had been experiencing facial nerve symptoms, led me to immediately decide on CK.  If I had been asymptomatic I may have chosen W&W, though now I am watching & waiting to see if the CK is doing its thing.... 

[Sheryl]

Hi - I think I am the "senior" wait and watcher - going on year #12 in a month.  My schwannoma is actually on the 9th cranial nerve, but I've been told everything is so close in the brain stem that it could be on the 8th nerve too.  At the time it was found incidentally, I was 54 and have had follow-up MRI's just about every year.  There has been some very minimal growth, but basically no symptoms.  Although, a few weeks ago, we were walking on a boardwalk over a marsh and there were no railings and I froze - I felt very uncomfortable and unbalanced.  This has never happened before and it was scary.  We turned around as it was closer to go back than to go to the end. 

Everyone is different and some can handle W&W while it would drive others crazy day in and day out.  It wouldn't hurt to get another opinion - get your ducks in a row but these tumors are usually slow growing and another year to research and review your options probably wouldn't be a problem.  Obviously, if you find increasing/worsening symptoms, that's another story.

Good luck - keep us posted,
Sheryl

[Rusty123]

Thanks, again, to everyone who has responded so far.  Your comments are very helpful as we make decisions and evaluate our options.  I appreciate your interest and thoughts.  I wish each of you the best as you continue your own journey.