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Am I normal?

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Angieber:
Hi!

I am new here.  Had the gamma operation 5 years ago at age 39. 

Thought I would be better.  Nope.  Have constant tinnitus, my face still hurts often, the metal taste in the mouth is terrible, can’t season my soups and sauces.  Everything is bland.  I brush my teeth constantly!   And the dizziness (feels like I’m drunk), and have to take a nap half the time in the afternoon to make it through the day.  I look like an idiot walking in the dark. 

Got used to this, quit my job and work part time from home. 

I did lots of physiotherapy which didn’t help. 

Is this normal?  Is there anything to do to improve?  I live in Quebec, Canada and my doctor told me to get used to it and sent me to a psychologist. 

Open to any suggestions…

donjehle:
Hi Angieber and welcome to the Forums!

First of all, let me say that I feel badly that you have had to experience everything you described.  That is truly awful.

And let me say that one thing I have learned from these forums is that nothing about acoustic neuromas is "normal."  We all experience different challenges from each other.  And then some people have no major issues at all before or after treatment.

Where did you have your gamma treatment?  Was it at a major acoustic neuroma center?  Many troubles (but far from all) come to those who received treatment from those who do not treat many ANs and are not skilled at treating them.  I fear that might have happened to you, especially considering how your doctor told you to get used to it and referred you to a psychologist.  That is not a very skilled statement.

Have you visited a vestibular therapist (not simply a physical therapist)?  My vestibular therapist was very knowledgeable about acoustic neuromas and knew how to treat balance issues arriving from them.  I went from being like I was drunk (and falling several times) to having better balance than most of the people my age (according to the tests the vestibular therapist gave me).  I highly recommend that you see a good vestibular therapist if you can.

My taste issues eventually went away in time, but you have had them for five years!  I would have thought they would have disappeared by now -- but, as I said, everyone's situation is different.  Someone else might be able to give you better advice on your tinnitus.  Mine is constant as well, but I am fortunate that I have learned to ignore it most of the time.

I wish you the best, Angiber, on your journey and hope that you receive some much needed resolution to these issues!
Don

Shaughnna:
The only advice I can give you is to get a new doctor.

Shaughnna

Jill Marie:
I agree with Shaughnna, get a new doctor.  My eye didn't tear after my surgery and I went to 2 eye doctors that new less about my problem then I did.  The 3rd eye doctor was a lot more passionate about my situation but recognized that he couldn't help me so he sent me to an eye doctor that could.  She is awesome and really helped me a lot. 

I don't know how much they can do to help you but it's certainly worth seeing a different doctor or two so you can find someone that can help you.  Also since the holiday season is almost over there will most likely be more people on the board soon that can help!

Take Care, Jill

deservethrow:
Have you visited a vestibular therapist?

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