Have you been offered any relief for symptoms?

[Patterjack]

Two years on from gamma knife treatment, MRI shows that my Acoustic Neuroma has continued to grow and is now double its original size. Obviously not good news.

The symptoms are now life changing. I am very unstable, have intermittent facial spasms and a constant fuzziness and ‘swirling’ in my head. There are no warming signs so I do not feel safe going out on my own. I no longer drive. Has anyone been offered any relief for these symptoms?

[drdeanbellavia]

Patterjack:

It seems that your Gamma knife surgery was botched up (it happens); if done correctly it should kill the DNA that makes it grow. When they did my GK surgery in 2002 they screwed it up on the first try and then got the positioning right. It is now only 65% of its pre-surgery size.

You need to get it done again before it affects your facial nerve even more (facial spasms).

The constant fuzziness and swirling in your head is probably due to your cerebellum overworking trying to maintain your somatosensory system.

I had a 15mm vestibular schwannoma in 2001 that destroyed my left inner ear when it crushed the 8th cranial nerve and blood supply to the left inner ear. I was falling all of the time and in the dark I didn’t even know I was falling until I hit the ground (or whatever I landed on). After a few months of that I decided to retrain my cerebellum using specific exercises to retrain each of the three semicircular canals in the inner ear—it worked! It took about two months doing the exercises once or twice a day to reset my cerebellum. After that once a week was sufficient and now, 17 years later, once ever month or two does the job. Your daily/weekly/monthly need for these exercises will depend on how compromised your balance is, but you can figure it out.

If you want to use these exercises to improve your balance click on the following link for PDF instructions and a video:

thebioengineeringco.com/ind...

Here two messages that I received from AN sufferers after doing the exercises:

1) “My AN is similar in size to yours and I had Cyberknife two weeks ago. Too early to say whether it made a difference to my dizziness (although I was told not to expect much change) but the exercises described above made a massive difference pre-surgery. My specialist also said to do as much exercise as possible, particularly anything involving hand eye coordination such as racket sports. I’m a cyclist and a runner so have continued both but am completely convinced that it is these exercises that have made the difference.”

2) 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.

I hope that this helps,

Dean

[weny]

I had a acoustic neuroma went to London st’barts hospital last year February for Gamma knife and radiation it has left me deaf and tinnitus in my left ear which is not nice .Going for my mri scan in February 2020 to see if my tumour has shrunk at Cambridge addonbrooks ,they can’t do anything for my deafness or tinnitus now I have to suffer with it which is not nice hopefully you will get on ok xx

[Patterjack in reply to weny]

Thank you. It looks as if we are on the same journey but I hope you have more positive news from Addenbrookes in February.

[Ballantyne56 in reply to weny]

Hi weny I have the same problem I can get through the deafness in my right ear but I am really really struggling with the Tinnitus I find it impossible to sleep