Awaiting results but saw scan - Acoustic Neuroma ...

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Awaiting results but saw scan

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Hi

I'm awaiting the ENT results from a scan initially for possible stroke but also for what might be causing my slight hearing loss and tinnitus. No stroke issues (except for slight hardening of brain arteries not considered worrisome) but stroke doc pointed out a ? that could from memory be the size of a cherry perhaps (lump, area?) on the right side of scan (lhs brain) that he said would be investigated further by the specialist and was likely connected to the problems I'm having in my left ear. Perhaps because of fear, perhaps, knowing he wouldn't likely discuss as it wasn't his area, I didn't ask more.

Having researched my symptoms over the last few days (scan a week ago) ...odd feeling in left ear, tinnitus, general balance off, mind fog, very tired, one dizzy episode lasting a few seconds with nausea, slight pain in left ear and now not comfortable sleeping on left side as ear starts hurting. Very very slight difference in sensation between l and r sides of face. Often need viscotears at night (dry eyes) All this seems to point to AN. So of course I am deeply concerned. I'm 67, osteoarthritis especially in left hip (but not yet hip replacement ready) and was/am trying to get myself fitter and walking (now more unsteadily, tho balance issues have been vaguely there for a couple of years) trying for 30mins a day. Liver functions pretty well but was in early stages of cirrhosis 5-6 years ago.

I can't imagine coping with surgery and the after effects and feel in a very different relationship with life than I was a couple of weeks ago. I live alone and very much hope I can keep driving.

I know I need to wait for the diagnosis but whatever it is, I have to live with these changes which may well get more challenging. My greatest joy is singing and playing guitar.

I would value some comments please.

Thanks for reading

15 Replies
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The joys of the diagnosis period, eh? Absolutely continue singing and guitaring: therapeutic, rhythmic, musical, relaxing stuff is so good for you and important, and brilliant at calming the brain, relieving stress etc.. The hearing in my AN side was affected, but the surgeon managed to retain some hearing as he chose the behind-the-ear approach for surgery but that depends on position of the AN. I have now started listening to classical music for the 1st time in my life as it's generally so calming., even if just through the good ear. As for the hip, don't add in that worry too - I had had both hips replaced at 46 and 50 (otherwise very healthy), then diagnosed with AN at 56 (now 63). The hips play a part in the balance feedback system, true, but it's all handle-able and the brain will cope with a lot of re-adjustment once you've had the (maybe) AN sorted. I went through on-&-off periods during pre-diagnosis, then surgery and Gamma when tiredness, dizziness etc. made driving a silly thing to do, but that was temporary (and was when I discovered online grocery shopping but). I have found that maintaining as many skills as you can helps enormously over time. My fuzziness and general ill-feeling disappeared practically overnight after the 1st de-bulking surgery (AN was 3cms), although periods have returned with me periodically over the healing period. This is all only my own personal experience and opinion. Be aware everybody's different, but the brain copes so well with re-adjusting. Brain plasticity is such a buzz word these days, so do some research on that. It can be very comforting I found. Apologies fo the lecture, please ignore if not useful. Best of luck, make a list of your questions as they occur to you and make sure you take it to your specialist consultation.

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in reply to anan88

Thanks anan88. I've been reading up on AN and wondering about the neuroplasticity area. I have a few gigs in the diary that I really do want to do if possible....maintaining skills and all that. We shall see.

Hi, first of all you need to await formal diagnosis, but you are right it COULD be an AN. If it is you need to educate yourself as that will greatly reduce you levels of anxiety - especially when you find out that (1) many people never need any treatment and simply carry on with their lives under a protocol known as "watch and wait". If an AN does need treatment there are many options these days including several surgeries and several radio treatments. Radio-treatments are particularly favoured by musicians as they often have better hearing outcomes than conventional surgery. Look at this web site amongst others for information anworld.com/

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in reply to bypass

Hi bypass and thanks for that info. At present the reading is taking my mind off possibles by presenting with possibles...but at least it's education. Now have appointment follow-up next Tues. Tinnitus is bad today. Went for a cuppa and found it rather hurtingly noisy that I was blocking my ears. The joys of coming home!! but even birdsong is a bit challenging today. I shall probably record the doctor meeting as I know I'm unlikely to take it all in.

They will most likely do jemmy knife I had mri and they found a cyst good luck let us know how it goes.

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in reply to Highwycombe

Thanks. Will report back next week after appointment.

Had mri on ear still waiting I had an mri on head never got results till I seen nuro had to wait so I thought it was clear he told me I have a cyst so still waiting on ear mri it's all a waiting game no appointment till October.

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Many many thanks to all of you who responded. I greatly appreciated the connection as I was scared but I am embarrassed to have to now say I am clear!

Rather shocked to get that news as I was sure I had seen something and was sure I had heard the stroke doc say 'that might be the cause of your ear problems' but I now wonder if I heard what he said while assuming I knew what he was talking about and referring to ... and didn't ask the questions I should have like...'just to double check, what exactly are you referring to?'

There is no knowing what caused my hearing loss and tinnitus, or my vertigo episode. or my balance issues but there is no sign of an acoustic neuroma. At present the ENT doctor won't diagnose Meniere's as I only had one vertigo episode and it was a week after my hearing and tinnitus issues appeared.

So along with great relief and some bewilderment, I realise I have learned a lot (and still know so very little) and must learn not to jump to conclusions. But this has been an education and a humbling experience as I never knew about AN before and had no idea what many of you may be going through and having to take on and come to terms with. My heart go out to you all. May I humbly offer huge respect and gratitude.

Don't be embarrassed! Be happy! This is one club where members are delighted to see others leave! Good luck!

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in reply to bypass

thankyou bypass. Very much appreciated. And good luck and thanks to you too.

Wowee, what fantastic news! Although it's great fun having an AN, don't be too disappointed as it's perhaps marginally even more fun without, so go celebrate! Well done!

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in reply to anan88

Thank you anan88. Haha!! Yes I have to agree you may be right! Tho, strangely I miss the focus! Anyway, I am relieved for sure. All the very best to you ( tho I have a strong feeling you make the very best of whatever comes your way) and thanks for your support.

Had my mri on ear the lady who did the scan wanted to do it again all the mri I had never needed to do it again. then she keeped on shaking her head .

Still waiting mri 7 weeks

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