Author Topic: With these symptoms, could I possibly *not* have an acoustic neuroma?  (Read 20137 times)

PaulW

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #30 on: November 14, 2015, 07:32:16 am »
Hey Jill no problems being on this board...
I am sure you could continue to look for answers to your problem.
I think your ENT has not referred you on to anyone else because the chances of finding an answer from here are probably slim.
I have not heard of brains giving up.. From my personal un medical point of view the issues sound like it is the nerve between the cochlear and brain.

As for your hearing, a change at 8000hz would be considered minor as it is up around the frequencies that don't get used for speech. There are other hearing problems that you can have that are not picked up well in hearing tests. For instance the ability to detect volume changes..
People with nerve damage sometimes find that everything is significantly quieter on the defective side but can actually hear quiet sounds OK. Result they pass the hearing test, but are effectively deaf on one side when volume levels increase. Having all sounds distort when volume gets louder happens too. Again effectively making you deaf on one side in moderate noise, but still able to pass the hearing test. It looks like you have nerve damage, caused possibly by a latent virus effect, which can happen decades after the initial infection. Or possibly some disruption to the blood flow of the hearing nerve.
Whatever the cause it's too small to be seen on a scan. I think it is unlikely that you will find an answer. I am not a medical professional so please accept the above as my own personal opinion and always talk to your doctor
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #31 on: December 03, 2015, 08:15:38 pm »
Thanks for all the responses.

I had actually done fairly well at putting all this behind me and moving on with my life. I knew that my hearing was not improving and possibly deteriorating on the left side. However, I felt that even if I lost it all on that one side, it still wouldn't be the end of the world. So, I was in that happy place again.

But then tonight, when I was on the phone, I decided to check out the bad ear (the left), something I hadn't done in weeks. To my dismay, it was much worse. Basically no comprehension at all in that ear. The voice on the other end sounded very faint and garbled.

Worse yet, I'm now pretty sure my other ear is affected too. I've been noticing some high pinging tinnitus sounds in the right ear over the last couple of weeks. I'd been doing my best to ignore it, but since the left ear was so bad tonight, I checked out the right one and noticed a significant drop in the high frequencies.

I'm going to both call my ENT back and ask my PCP to refer me to an oto-neurologist. But at this point I feel like I am going through the motions. I don't have an acoustic neuroma, so no matter what I have (I'm thinking possible autoimmune inner ear disease now), it seems like corticosteroids are the treatment of choice. And I'm just not going there again, especially not long-term or high dose.
I'll probably just go deaf in a year or two and will have to accept things for what they are.

ppg01080

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #32 on: December 05, 2015, 06:36:01 am »
Get another opinion. I went yesterday for a second opinion. I now have hope that I may save my hearing. I realize you do not have an AN but you are experiencing hearing loss and you need answers. It took 10 years for me to get a Lupus diagnosis for my daughter. I knew something was wrong.
Good Luck,
Patty

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #33 on: January 05, 2016, 08:44:22 pm »
Thanks Patty. I did indeed get a second opinion. Today, I was officially diagnosed with autoimmune inner ear disease. I had scads of testing done. The audiometry evaluation wound up being something of a horror show with my bad ear much worse -- all frequencies from 750 on up in the 85 to 90 DB range (whereas 2 months ago I had only high frequency hearing loss in the bad ear). Speech recognition in the bad ear plummeted from 80% at 60dbs to a new low of 40% at 90 Dbs. My good ear which tested 100% normal 2 months ago is now anything but. Moderate loss at low frequencies; severe loss at high frequencies. The only good news is that I still only have mild impairment at the mid-level frequencies and actually snagged a 100% speech recognition at 60Dbs in that ear. The objective tests of cochlear function showed abnormalties in both ears.

The oto-neurologist told me bluntly that I was going to deaf unless I took the immunosuppressant drugs he was prescribing. After looking at the scant research on this very rare disease (and reading the 3 or 4 personal accounts I've found on-line), I'm pretty sure I'm going to go completely deaf whether or not I comply. But the meds don't look that toxic, at least in the short term, so I'm giving them a try for a few weeks. At least that way friends and family will all be satisfied that I tried something, instead of just giving up.

Jill_S

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I just wanted to give a brief update -- in case someone else here winds up having autoimmune inner ear disease instead of an AN and because my last post was so bleak.

I did wind up taking the medication and it worked! I regained almost all my hearing in my right ear (in normal range now all the way up to about 5300 Hz and enough in my left hear that we can now start thinking about hearing aids. Back in January, I had "profound" loss in most frequencies in my left ear. Now a couple of these frequencies are borderline "severe/profound." We'll see. The audiometrist at first suggested a CROS device for the bad ear, but I really want to see if amplification makes any difference, before just giving up and going with the CROS.

So, if anyone out there does wind up with AIED, do not dispair!

ppg01080

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Jill,
Great news. I had my surgery 7 weeks ago. I lost all hearing in my right ear. I'll be looking into my hearing aid options in August.

ivana

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I just wanted to give a brief update -- in case someone else here winds up having autoimmune inner ear disease instead of an AN and because my last post was so bleak.

I did wind up taking the medication and it worked! I regained almost all my hearing in my right ear (in normal range now all the way up to about 5300 Hz and enough in my left hear that we can now start thinking about hearing aids. Back in January, I had "profound" loss in most frequencies in my left ear. Now a couple of these frequencies are borderline "severe/profound." We'll see. The audiometrist at first suggested a CROS device for the bad ear, but I really want to see if amplification makes any difference, before just giving up and going with the CROS.

So, if anyone out there does wind up with AIED, do not dispair!
Hi, I have AN on night side but started to have problems with my good ear, hearing loss without explanation. I am looking for right doctor and tests to find out what is going on. Right now i am on corticosteroid therapy. Please contact me, any help is very needed :)