ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: gtrmantb on February 08, 2015, 05:52:53 pm
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Hi all,
I am new to this forum but have been reading here since November when I was diagnosed with my AN in the left ear. I am a musician and a commercial pilot and would like the greatest chance to keep the hearing I have in my left ear. I have had records reviewed by HEI, Keck at USC, UPMC, Vanderbilt, and have done a consult at MUSC with Dr. Lambert. All recommended surgery for my AN using the Retrosigmoid approach. Only 1 problem is they only give me a 30% chance of keeping my hearing. As a musician, losing my hearing would be devastating. Dr. Gardner at UPMC gave me the greatest hope with a 60% chance of saving hearing by debulking the tumor followed by radiation if necessary. When I mention this to other experts they balk. I am hesitant to go with radiation due to the Mayo clinic study where only about 23% of patients treated had any hearing after 10 years. Looking for some suggestions and input from those of you who have been down this road.
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First thing I suggest you do is throw the statistics out the window. They are meaningless when it comes to any one person's hearing. Some people retain all or part of their hearing, many don't.
I went deaf on my AN side with a tumor less than half the size of yours.
I think you need to accept that there is a better chance of losing hearing than keeping it no matter what the doctors tell you.
Sure, it'll be devastating. I've been deaf in one ear for a bit over 3 years. It didn't kill me and I adjusted to it like human beings adjust to any kind of loss of something important to them.
Do your research and pick the treatment that you think is best for you.
Read PaulW's post in the following thread:
http://www.anausa.org/smf/index.php?topic=21680.0;topicseen
His hearing came back after radiation but that seems to be the exception rather than the rule.
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The main objective in de-bulking and leaving a sliver, followed up by radio treatment is to protect the facial nerve. As others will tell you, AN's are notorious for zapped hearing regardless of treatment choice. What do your hearing test say right now? Hearing preservation is not on your side with these things. I know it's hard but, choose the treatment that you believe has the best chance of killing the tumor. That is the most important, and hope for the best on the hearing.
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Get an ABR test too if you haven't had one. My hearing is pretty darn good, but my ABR is "bad", so my Doc thinks my hearing is going to be toast no matter what I do. I have read research suggesting that the ABR is not predictive of hearing outcome, so maybe my Doc is wrong. Either way, an ABR is a simple, easy test that might give you some useful info.
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Hi gtrmantb .....
I also am a musician and I will have to be honest and say losing my hearing in my left ear was devastating.
Following my first surgery via retrosigmoid approach, I retained 20% of my hearing with 100% speech discrimination so it was workable with a good regular air-conducted hearing aid. When my tumor grew back aggressively (very rare, indeed) it was necessary to destroy the remaining hearing to get the regrown tumor. (I was not a candidate for radiation treatment due to massive doses of radium as a child.)
That being said, when I knew I would be totally deaf in my left ear, I discussed with Dr. Friedman the possibility of a bone-conducted hearing device. He concurred that it would be the best option for me and said he could implant the abutment at the time of my translab surgery. I have been delighted with my Ponto Pro hearing device. It is not "normal" hearing, but it certainly is as close as one can get to it. I have had it for about 3 1/2 years now and wear it on average 11-12 hours a day. The longer I have been wearing it, the more my brain is adapting to adjusting to the sounds from the processor and I do not consciously think about not hearing correctly very often. I liken it to my hearing ear picking up perfectly normal sounds, while the processor picks up amplified sounds from the other side. My brain has learned to mix them together into acceptable sound. I hope that makes sense.
Many thoughts and prayers. Clarice
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Thanks to everyone for the replies. I have learned so much from talking with the experts, this forum, and my own research in the few months since I was diagnosed. Having been a professional musician and music lover for over 20 years any promise of increasing the chance to save my hearing is very tempting. However, I can see how this may just be wishful thinking on my part.
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I first saw Dr. Frankel at MUSC but switched to Dr. Friedman. Are you in SC?
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No I am in Savannah, GA