What is your view of hearing preservation

[Syl]

The best way I can descrbe my results from Middle Fossa,  ...... they were able to preserve  "measureable hearing",  but measurable hearing has proven to be quite different than "serviceable" hearing.   The additional headaches etc that I have and see so many middle fossa patients having post of compared to trans lab, I definetely think I would have chosen trans lab over middle fossa had I known how wotheless the hearing that is left would be.  They can measure something there, but I sure can't use it.

patti UT

Patti UT:

I'm so sorry about the hearing loss and the bonus headaches. I too chose to preserve my hearing, but with retrosig. I lost additional hearing with the surgery. I have something like 20% on my AN ear, which means that I'm not a candidate for a BAHA and the hearing aid I have helps with directionality and very little with speech. But I know I'm better off with it than without it--the hearing aid, not the hearing loss.

I also have the bonus headaches. I have wondered if translab would have been a better choice for me. But, I don't know that translab would have resulted in a better, headach-free outcome. I figure it's not healthy to second guess a decision I can't take back. It's better to take what I have (hearing loss, dizziness, headaches) and just deal with them to the best of my ability. That is the only way I will be able to put this behind me and accept the new me.

So, please don't dwell on the what-ifs. I think it does more harm than good.

Syl

[macintosh]

Two little nuggets to throw into this discussion--

First, on the U. Pittsburgh website, one of my favorite stats is that a relatively high pct. of neurosurgeons say that they would delay having any treatment on a small AN, even if it shows some growth, if they were the patient.

Here's the UPitt site, which I found very useful, although it's starting to fall out of date: http://www.acousticneuroma.neurosurgery.pitt.edu/

Second, when I was doing my research on hearing preservation a few years ago, I found out that my docs at the U. of Florida refused to even enter that discussion because they said that too many places used unrealistically low standards (like 50/50) in order to keep their stats high. Since I was treated two years ago, I have heard that the U. Florida docs have finally agreed that studies show a better chance of hearing preservation from fractionated (multi-shot) CK over one-shot approaches.

I had my treatment two years ago (one-shot LINAC) on a 7mm AN, and as far as I can tell, it seems to have arrested what was pretty rapid hearing deterioration. I haven't bothered to go back and get my hearing tested, because there's nothing I can do about the results, but my annual MRIs are showing good indications regarding the AN.

I think having even compromised hearing on one side is better than nothing, though I do have trouble hearing people speaking from my weak side. My conclusion is that it makes a lot of sense to put off treatment until increasing symptoms or MRI indications of significant growth make it necessary. After that, fractionated CK probably gives you the best chance of hearing preservation, but as everyone on this board knows, results always vary.

Mac

[Patti UT]

The best way I can descrbe my results from Middle Fossa,  ...... they were able to preserve  "measureable hearing",  but measurable hearing has proven to be quite different than "serviceable" hearing.   The additional headaches etc that I have and see so many middle fossa patients having post of compared to trans lab, I definetely think I would have chosen trans lab over middle fossa had I known how wotheless the hearing that is left would be.  They can measure something there, but I sure can't use it.

patti UT

WANT TO UPDATE THIS POST  Now that I am facing AN #2,  if I go translab to hopefully improvbe balance, I will loose what little "measurable" hearing I have left.  Although I was whining about it being measurable not serviceable, I have to say, now the thought of loosing it is upsetting as even though I really can't hear people taking and have no directional hearing, I am convinced it does assist my good ear to some extent.

patti ut

[another NY postie]

I have a small AN in IAC all the way back as far as it can go (so the doctors say ) and I have chosen to take the gamble and try to preserve my hearing and am scheduled for middle fosa next month. I was only down 15% when I was diagnosed in June (May hearing test) and I had a follow up hearing test in mid August and showed continual decline.  None of it is huge, and I still have 100% word discrimination.  I have no other symptoms but this hearing loss, fullness, and sound of ocean. 

What I culled from the abstracts I read was the higher your hearing is when you go in, the higher chance you have a preserving it.  I also researched long term hearing preservation outcomes because it seemed that even with preservation of
servicable hearing, it continued to decline over time even when preserved.  Having it on the superior portion of the vestibular nerve also seemed to be a positive factor.  That being said, it seems that many of these studies are with a small number of patients, and once you break out surgery type, the pool is even smaller.  I know it is a gamble with anything we do whether it be w/w, radiation, or surgery.  I have struggled with whether I am putting too much emphasis on hearing if in the end, I lose it anyway but I am hoping not to lose directional sound as this seems to be one of the hardest things people deal with and as a teacher, I am worry greatly about this.