Question about acoustic nerve tumours

[Compressorman]

I have a tumour on the acoustic nerve for past 45 years, wont av operation as it cud leave me with worse!...its life threatening but still here!

Doc gave me serc tablets that never worked as they are for inner ear not for a tumour, so much for Quacks?

I have gon through stages of sickness, vertigo now at very bad tinitus ontop of tinitus, so lokin on utube now at exercises..

U read about ops goin well and those that didnt, I read of one where a guy was paralised ended up in a hammock intraveinously fed, terrible!!.

And so my wife puts up with my mood swings thank god!

[Happyrosie]

serc tablets I believe are for dizziness. They are not meant to attack the tumour.

I think the exercises you could benefit from (and I’m surprised your doc has not recommended them) are the sort that train your brain to believe what the eyes are telling it and not the ears.

Search for vestibular rehabilitation exercises.

[Compressorman in reply to Happyrosie]

thanx for that reply, I have no sickness or dizziness, all thag went many years ago, just the tinnitus!

[Compressorman in reply to Happyrosie]

I have a feeling these extra tinitus noise is from my neck???

affects me when just droppin off to sleep, its like electrical, a nerve being touched makes me jump.

[TinnitusUKPat Partner]

Dear Compressorman

Thank you for your post. From reading it, it seems that you have an Acoustic Neuroma - is that correct?

The likelihood of fluid building up in the brain isn't that common - most grow too slowly for that to happen. As you say, you've had this for 45 years, so I have to imagine that it is under observation by your doctors.

An operation to remove a tumour like this might result in single sided hearing loss - I believe this is the issue which affected Jim Moir, aka Vic Reeves, recently: theguardian.com/tv-and-radi...

It might be worth contacting the British Acoustic Neuroma Association for their advice on how to manage the underlying issue - bana-uk.com/

As Rosie says, Serc is a holdover from Meniere's treatment and not seen as that relevant today - tinnitus.org.uk/tinnitus-an...

[1966366 in reply to TinnitusUKPat]

What a brilliant, knowledgeable post

[doglover1973 in reply to TinnitusUKPat]

Interesting Pat. He doesn't say if he has any other symptoms - notably tinnitus - which is surprising. Doesn't AN always cause hearing loss with T?

[TinnitusUKPat Partner in reply to doglover1973]

Hi DL, the tumour pressing on the auditory nerve can cause mild hearing loss, hearing loss which fluctuates, speech recognition problems or accompanying tinnitus. Some folks don't identify hearing loss at all, view tinnitus as the cause of their hearing loss (this is the other way round) or may have a loss which is currently low-level.

The level of hearing loss being reported in cases like Acoustic Neuroma depends on what the person who is going through it reports to their specialist, what their test results suggest and what is viewed clinically as the key issue - I'm sure it's possible to have different priorities identified by a patient, an imaging technician and a specialist which are all fundamentally part of the same person's case.

[doglover1973 in reply to TinnitusUKPat]

Thanks Pat. I'm waiting for long overdue scan results and hoping and praying I don't have AN. With one sided hearing loss I know it's possible.

[TinnitusUKPat Partner in reply to doglover1973]

It is, DL, but it's still a fairly rare condition from what the data tells us.

[Compressorman in reply to doglover1973]

DL, I started with vertigo one day up ladders in a factory, it lasted around six months, then I got the sickness, that lasted about same time, in that time I had the flu and felt my hearing had deminished in the one ear, doctor syringed ear with no effect. Down to ENT for tests, then onto a scan, found AC! Told operation was major and dangerous as side effects were many..I was left to make a decision. One Sunday on tv there was a programme on a merchant banker that went thru the op, was devastating to watch and hear, surgeon cut thru wrong nerve and left him in a hammock for life, he deficated through a zip in the hammock, he was fed introveinously, on that prog I decided to WAIT, I have watched different ways of removing the AC and still I see side effects. If I had had the op I cud have been same as the MBanker, instead I am stll here 40 odd years later, got married with children. Its ur decision I was never pushed!

[doglover1973 in reply to Compressorman]

Thanks CM. I admire you for living with it all these years and hope I can be equally brave - if need be. It sounds like you've lived a full & happy life. Good for you. I can't help but agree. There are risks in having radiotherapy or surgery. That's a really sad case you saw on TV obviously. If I've got one I may come back to you for more help and advice.

[Compressorman in reply to doglover1973]

my hearing loss went very slowly, had to leave Police force due not bein able to hear my radio clearly, plus was brunt of many a jibe as most conversations consisted of phonetics due to hearing loss!

[doglover1973 in reply to Compressorman]

I'm sorry you had to leave your job. That's a shame. Did you retire early? I've lost my hearing very slowly too - over the last 12 years. I just didn't realise it . I thought the tinnitus was making me deaf. My GP said there was nothing he could do. It wasn't until my T got so loud I couldn't cope I asked again. A new GP ran a hearing test and told me I was deaf.

[Compressorman in reply to doglover1973]

exactlynothing can be done, so bear up hope tomorrow is better than the day u get it bad, thing is wots the alternative, tablets that do nothing but give u side effects on top of tinnitus?..be strong, sleeping time is worse, if bad in daytime listen to music, keep urself busy, try ur hardest NOT TO DWELL u av one life, look at people worse off see if that helps?..in fact talking to each otger as am now will help just knowing u are not alone?

[doglover1973 in reply to Compressorman]

Thanks CM. All this was two years ago. I waited forever for the hospital to whirr into action. I'm much better now but everything you say is very good advice. It's great to talk to other people on this forum.

[doglover1973]

Glad you're still here CM 🙂

[Kellythecat-74]

thats the devil and the deep blue sea option . I have a friend whose son has similar . Deaf in one ear due to the tumour. They wont operate.