Waiting for Gamma knife : I have been... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Waiting for Gamma knife

Soxyboy profile image

I have been reading posts on this site for months since being diagnosed with an AN in January. I have found it incredibly helpful and would like to say thank you to everyone for that. I have no imbalance problems but I do have hearing loss and tinnitus.

I'm worried about the risks and side effects of having Gamma Knife which I understand are worse than my current symptoms, but necessary because my AN is too big for watch and wait. Thankfully it was picked when I had a hearing test and MRI. I'm having GK in a few weeks. But my gut feeling is that I don't want it. The speed of my diagnosis and treatment has been amazing( University Hospital of Wales) and it's been very comforting to know that there is support from people in the same position as me.

15 Replies

Hi, understand your thoughts completely but think Gamma knife is the correct call, looks like they have caught it in time before some of the side effects that could have come your way. If you let the tumor continue to grow a number of things may start to happen (depending on the position) my wife suffered facial palsy due to the facial nerve being stretched because it was not caught in time. There is sometimes a slight increase in size immediately after GK but the end result will result in stopping the growth which has to be the right thing to do. My wife goes for her 2 year scan post GK in September. Hope this helps and good luck.

Soxyboy profile image
Soxyboy in reply to Leodo

Thank you, I have been for my yearly scan, post treatment, and it has been successful.

Hi, so glad your a.n. is being treated promptly. My an was 10mm when found by accident, incidentally also at University hospital of Wales, that was 4 years ago and scans show it is not growing.

I am wondering how large your an is that they have decided to GK , I have no hearing now as my other ear is also deaf for a different reason and the tinnitus in my an ear can be quite disturbing. I am totally dependent on hearing aids

I hope all goes well for you .

Like you I don't wish for intervention but am wondering how long this can be put off,

I have weird symptoms that would suggest it might be on the move.

Good luck and I wish you well

Soxyboy profile image
Soxyboy in reply to Delgirl1

Hi there. Thank you for your reply. I'm sorry that I haven't seen your post until now. I was advised strongly to have GK because my AN was 19mm. I think 17mm is the limit for 'watch and wait' and if it gets to23mm you are reccommended for surgery.However so much depends on the position of the AN, looking at my scan, mine seemed to be long, not bulky, with space around it, so not affecting anything other than my hearing. And easier to treat I guess. If it is near your facial nerve or brainstem then symptoms are different or worse.

Having had the treatment, I've been told it's not grown.....and I've had virtually no side effects. No better, no worse, but early days yet. The team at UHW and Velindre are great, I will be asking them about my concerns,although I'm not in a rush, you should too.

Good Luck to you too

Good luck

Hi Soxyboy I was diagnosed wit AN in 98 /2000, I decided to go with wait and watch . But my an started to grow so was advised to have Gk in 2010 in Manchester Hosp . I found the head brace uncomfortable . But otherwise all good . My an has shrunk . I’m deaf in one ear and have tinnitus in it .

But good .

Good luck with whatever u decide

Soxyboy profile image
Soxyboy in reply to sheeba68

Thank you so much.

Soxyboy:

What is your other option other than radiology (GK)? Invasive surgery removes the nerve causing many other problems. My AN in 2001 was only 15mm; it was quickly resolved with GK surgery and has shrunk over 35% (and is dead). Having an AN guarantees balance and hearing problems, typically tinnitus and sometimes pain; that's the way it is and you will have to just get use to it and move on. Waiting only increases the problems, possibly even facial nerve involvement. Your "gut" is an important thing to listen to, but I'm thinking that it is your fear and not your gut reaction that is gripping you. Best of luck on your upcoming surgery.

Dean

Thank you. I listened to everyone else, not my gut. And I must report that it did go well!

Hi there. I have large AN , treated with GK 8years ago abroad. Mine has not shrunk, but have not grown either.

I have recently moved to Wales. How is your experience with the team at UHW.

I have no hearing loss, no tinnitus, no vertigo . Only slight facial tingling that Dsnt bother me.

My AN size is 2 cm ×2.6 cm

I am worried as it is large .

Soxyboy profile image
Soxyboy in reply to nido

Hi there, sorry for the late reply. Croeso i Cymru. My experience at UHW was quite a story on this occasion, but I won't go into that unless you are still interested after all this time. The NHS is brilliant.I would say that I've been told that mine hasn't grown either, after the Gamma Knife. and I feel no different now, than I did before the treatment, 18 months ago.

You should still get yearly scans, to check that your's hasn't grown, even if your symptoms haven't got worse, something that you maybe didn't know if you had the treatment abroad and is routine with the NHS.

I hoe this helps, Good luck.

With AN, position is more important than size.I had GK 5 years ago.

The teams looking after me were great and the only unpleasant thing was fitting the halo(largely abandoned now I think in favour of a mask).

I was tired after for a while and, yes, I had vertigo 5/6 months later Horrible.Now,I still have balance issues, I have brain fog (I work round it as far as I can),little or no tinnitus and a little tingling in my lips and chin.I have little or no hearing in the AN ear.I think I made the right decision as my AN was in danger of putting pressure on my brain.

Looking back I had no fear at the time,just as much info as I could gather and no regrets now.In life I think our only path is to go forward a day at a time and make the best of it.

Kkk7 profile image
Kkk7 in reply to Hannibel

Hello

Do you have tingling before treatment..My AN was removed in 2015 from last 1 yr I have slight tingling on AN side on and off in lips tongue and cheek MRi is due in December..

Mine tumor was removed by surgery it was 3.5...hope it never grows back.. tinnitus is there no hearing AN side...

Hannibel:

There is no reason why you need to maintain your symptoms when you can reduce or get rid of them with cerebellum-resetting exercises like many others have. In 2001 after GK surgery I developed these exercises and got rid of the brain fog, brain pain and balance issues. At first it took a couple of month doing the exercises every day; today I do them once a month and have no balance issues. Go to the following link (also download the PDF for a better understanding of these exercises):

thebioengineeringco.com/ind...

Here is an email I received regarding this issue:

Hi Dean: I had an acoustic neuroma removed 6 years ago. I found your one page article on the treadmill exercises and they have made an amazing difference in my life. I am very thankful that you shared this and that it somehow popped up on my Google search early last year. Terry

Dean

Soxyboy profile image
Soxyboy in reply to Hannibel

Thank you for your reply, I went ahead with the treatment, it was a good choice.

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