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First talk with the doc

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concerned:
My husband experienced sudden hearing loss early last summer. Since then, he keeps adding symptoms: numb tongue was the next one, followed a couple of months later by numbness in his nose and face. He sounds pretty normal to me but says he has to work really hard to talk right and can't taste things so well. All the symptoms are on his left side. Next symptom: at the age of 49 he walks like the old man played by Tim Conway, only my husband walks a little faster. During all these months he has been to the dentist, his primary care physician and an audiologyist. The audiologist told him that he has severe hearing loss in his left ear, particularly in the high frequencies, and gave us the number of an ENT she recommended. The call didn't get made too fast and I was getting concerned. After multiple hours of time on the internet, I had it figured that he probably had an acoustic neuroma and that it could be pretty big. So I pushed him to make the call, and he saw the ENT who said he thought it probably was AN. We saw EMT and the MRI today: confirmed a 3cm AN.

The doctor told us that he has done about 400 AN surgeries, many of them with the neurologist he wants us to see. He feels that surgery will probably be our only option, but gave us the name of a radiologist and encouraged us to see him if we thought we might want to see if radiation therapy is an option.

So there's my newbie story. My concern now is that these symptoms just keep popping up. Now he has a hard time doing thinking tasks. He doesn't seem overly confused or disorganized (compared to say five years ago) to me, but he says he has to work so much harder to look the same as ever. The doctor encouraged us to have the surgery soon. My biggest concern is that as we wait, more nerve tissue will be involved and ultimately lost with the removal of the tumor.  Have any of you had symptoms stack up relatively quickly? He has gone from pretty much symptom-free (including a hearing test last April) to where he is now. Am I just to jittery?

Thanks for your input.

sgerrard:
The timing and pattern of various symptoms seems to cover a very wide range with acoustic neuromas, so there is really no telling whether he is in for more, or already reached his max. It is not unusual for a tumor to grow quite large before any symptoms show up.

The difficulty walking is troubling, it could be pressure on the brain stem, which usually indicates that surgery soon would be a good idea. 3 cm is about the upper limit on radiation, so it may not be an option in your husband's case, but it doesn't hurt to ask. I would not worry about losing more nerve function over the next weeks, but I would also not wait around all summer to seek treatment.

Best wishes to you both,

Steve

leapyrtwins:
I agree with Steve, I would start researching treatment options fairly soon as it sounds like your husband's symptoms are just getting worse.  At 3 cm his AN may be too large for radiation, but you never know.

The most important thing is to find a doctor or doctors experienced in treating ANs.  There is a list of doctors on the opening page of this website under "medical resources" and people on this forum are also more than willing to recommend doctors who have treated them.  Some may have even been treated by the doctor(s) that your husband has seen or has been referred to.  It would be helpful if you told us where you live.

There is also some very good general information on the opening page of this website under "overview" where you can find out more about acoustic neuromas, how they are treated, etc.  The ANA will also mail you information if you want.

Jan

trhoads:
Well, as for me, I went to sleep fine one morning (I work nights), and when I woke up in the afternoon, the entire room was spinning, my eyes were rolling around in my head, and I could not walk due to the dizzyness.  The doctors were convinced it was viral for about 2 weeks, and then finally did a MRI, which showed a very small tumor (less than 1 cm). 

So, I had a small tumor, but was very symptomatic ..... and the symptoms arrived very suddenly.

I wish you and your husband the best of luck.

Tonya

Kaybo:
Hi!
I could be totally off here, but I think that if you will really look back, you will find so things that you can attribute over the last few years to the AN.  I was very young and had a very large tumor, but we still can think back to instances that make sense now...even to my teenage and college years!  I know that EVERY AN is different and grows at different rates.  If I can help you in any way or if you just need someone to talk to, please let me know.
K

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