Not sure how to go forward now! - Acoustic Neuroma ...

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Not sure how to go forward now!

Keith12f profile image
12 Replies

I've posted on here before and 30 years ago I was a BANA member after my surgery in 1987. Life gradually settled after the removal of three AN's in Oxford. I was quite ill for a several months which had a bad effect on my motorcycle business. Gradually things improved but my hearing never returned in my left ear, I assume my acoustic nerve on that side went with the AN's. About five years ago my balance issues returned and I have pulsing in my right (good) ear and ringing in my head (not sure where!). I pestered my GP and had an MRI which showed nothing about 5 years ago. I'm 81 now so the balance issues could be due to that. I could insist my GP sends me back to ENT but I wouldn't want to go through surgery again as I look after my wife who has osteoporosis. So, I'm undecided what to do and will just accept the way I am now. Best wishes to all on here, I know how you feel. Keith ZX12R

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12 Replies
Kristyll profile image
Kristyll

Good luck and best wishes to you Keith. I had my OP the same year

bypass profile image
bypass

Hi Keith. Take one step at a time. First, remember that there are many other possible causes for your symptoms. Then, if you and your Doc think it sensible, take an MRI (if only to eliminate another AN). In the unlikely event that it is an AN, then remember that radio treatments today are at least as effective as surgery and are normally outpatient procedures with no significant recuperation period - so you could continue to be your wife's carer with little or no interruption. Hope this helps. You might also like to read my story here - anarchive.org/chris.htm

Keith12f profile image
Keith12f in reply to bypass

Thanks for the information and quick reply

drdeanbellavia profile image
drdeanbellavia

Keith:

Getting older is not great, especially when old problem reoccur. Hopefully you have not grown another AN. Refer to the following link to learn some "Brain Exercises" that could help to regain your balance:

thebioengineeringco.com/ind...

Also refer to my post "How I used Brain Exercises to Regain my Balance".

Dean

Keith12f profile image
Keith12f in reply to drdeanbellavia

Thanks for that Dean

Kristyll profile image
Kristyll

Also similar time to when I had mine. My hearing never returned and still got poor balance but adapt after all this time. Good luck take care

mumumelon profile image
mumumelon

Keith, you sound like such a lovely man. I am 82, and I also have symptoms that are concerning. Tingles, stumbles at times, fatigue when talking to friends. I had an MRI a few months ago. I do still have a 1.3 cm portion of tumor, but it is currently inactive. I've always felt the symptoms are due to damage from the original tumor and from the operation to remove a portion of it. But one always wonders: has that thing found a blood supply and set out growing? I most cases, the answer is: no.

Keith12f profile image
Keith12f in reply to mumumelon

Thanks for replying to my post Mum, sorry to hear of your ongoing symptoms. I'm just in a bit of a quandary whether to peruse my problems through ENT or just sweat it out. Being as I had three an,s removed 30 years ago I wonder if I have another. I could insist my GP refers me but I'm coping as I am. As I posted I'm kept pretty busy in the house with my wife not able to do much due to osteoporosis. So I may persue things through my doctor when this flu thing has subsided, don't want to go to the surgery till then. Best wishes, Keith

anan88 profile image
anan88 in reply to mumumelon

I always feel my symptoms are more from the surgery and the Gamma Knife, which may be unfair. We'll never know, but I suppose that doesn't matter as long as we deal with them OK. I still find meditation the biggest help with my symptoms. My tiny remnant was declared stable last year, so I'm sending it mental messages to stay that way!

anan88 profile image
anan88

Hello Keith - I agree that Gamma Knife is much easier and more convenient than surgery, if you decide to go that route. As you say, you're very pushed for the time ad energy to pursue it at the moment, but the question is whether you'd prefer to set your mind at rest by finding out or are more content to soldier on as you are. Best of luck either way, you're clearly a true trooper which I bet your wife appreciates!

drdeanbellavia profile image
drdeanbellavia

The reason I choose Gamma-Knife over cutting surgery was the hardship posts following surgery. At the time (2000) there were no posts about hardship stories using the Gamma-Knife and there were hundreds of hardship stories using conventional surgery.

Keith12f profile image
Keith12f in reply to drdeanbellavia

Being as my surgery was in 1987 I didn't have the option of gamma knife. In fact my consultant said it would be best if I travelled to Oxford for treatment as there was nobody in Cornwall experienced in this work at the time. Thank you for your kind reply, Keith

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