I had a acoustic neoroma : I was 2... - Acoustic Neuroma ...

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I had a acoustic neoroma

Listal70 profile image
11 Replies

I was 23 when I had a brain tumour I’m left with a facial palsy and deaf but I’m still here after 21 years

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Listal70 profile image
Listal70
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11 Replies
Kkk7 profile image
Kkk7

Hello so u still do MRi and is there any regrowth in 21 years I was operated when 26 now I am 30 always wonder being young I had AN does anyone has to this how's life with one ear and palsy I am having same problem

Listal70 profile image
Listal70 in reply toKkk7

Hi there no I don’t having mri anymore I had them for 10 years nothing her back so they just left me alone thank god. I hate being deaf but there’s nothing I can do about it I found the palsy the worst to accept I still struggle now after 21 years.

Kristyll profile image
Kristyll in reply toListal70

Same here years later but still Tinnitus and balance probs on top, but here to tell the tale x

Freddy1000 profile image
Freddy1000 in reply toListal70

Have you looked into either facial nerve graft or something called gracilis transfer which is something that I am looking into at the moment, I saw a consultant last week and think I will go ahead with it , I hate my palsy and still struggle with it , he shown me photos of recent patient and they look brill I think

Listal70 profile image
Listal70 in reply toFreddy1000

Who did u see about nerve graft cause I asked my consultant and he said it wouldn’t work getting a nerve graft cause I had my nerves cut and glued back together

Freddy1000 profile image
Freddy1000 in reply toListal70

I saw a guy called mr Evriavades in Birmingham Queen EIziabeth , my nerves and facial muscle is tottally had it , I saw a consultant in Nottingham Qmc and he said that it was unlikely that I can have it done , but Birmingham said they can but it would involve taking muscle in either of the ops and grafting a nerve from your good side to the other and can leave bulkiness which is wat I want to avoid , so I am leaning more to the op I mentioned as it’s the same effect with restoring some smile and the other is more ops involved after also the nerve needs 6 month before it can function

Listal70 profile image
Listal70 in reply toFreddy1000

Hope it all works well for u good luck x

Freddy1000 profile image
Freddy1000 in reply toListal70

And you x

Freddy1000 profile image
Freddy1000

Had An at 21yrs old in 1988 , I’m now 52 , i had 2 regrowths since and been removed 1995 and 2005 but I still have it , and have mri scans every 2 yr, I’m due my next one soon, all the usual fall out , palsy and loss of hearing., Balance issues and vertigo and much more , but I’m still here to tell the tale 🙂

Kristyll profile image
Kristyll

Likewise x

Leodo profile image
Leodo

My wife had the facial nerve transfer through mr evriviades 15 months ago. Results are good. Gamma knife for the AN was done in September 2017, we go for a 2 year scan this September. Hope all goes well with you both

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