Vestibular rehabilitation

[craigy290272]

My wife saw her specialist in June. His letter back to our local hospital recommended vestibular rehabilitation. Nothing has happened on this yet. A further mri was done 5 weeks ago and she will be seeing the ENT consultant next week for an update. Symptoms have worsened over the last 12 months so keen to hear from those under NHS going through similar and what you are doing etc.

[mcblue]

Is your wife waiting for an op or has she already had the AN removed? My husband had his op 18 months ago and is still having rehabilitation in the form of , physio, psychology and occ health.

[craigy290272 in reply to mcblue]

No. Tumour was only 7mm. We see Consultant on Weds for MRI results.

At the moment we are on watch and monitor. However, the symptoms experienced are quite severe and impacting daily life.

[Smiffy65]

Hi. What are your wife's symptoms whilst on watch and wait? I'm in the same position and mine were headaches and balance issues that affected my daily life severely. The best advice I had was from Dr Dean Bellavia on this site so if your wife has similar issues in sure he won't mind me sharing below. It has made a huge difference to me. Good luck. Dean's advice was as per below (hope the link copies over ok but shout if not):

Headaches: it sounds like your neck muscles have tightened up (possibly from typing?). Strongly massage the neck/back muscles on the painful side until to pain subsides. The more the massage hurts, the more you are massaging the right areas. You might also get a yoga book dealing with head/neck/shoulder stretches to lengthen the shortened muscles to their healthy state.

Balance: balance is controlled by the interaction of: 1) your cerebellum (through the inner ears), 2) muscles (especially leg/foot muscles), and 3) vision. If your AN destroys one inner ear your cerebellum gets useful information from your good ear, but gets bogus information from your compromised inner ear. Thus, it is difficult to keep your balance when you walk on uneven ground, especially in the dark as most of us have experienced. But if you “reset” your cerebellum you can retrain your legs/feet to walk more solidly and regain most or all of your balance. This is important both before and after surgery (which is hopefully Gamma-knife surgery).

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 figured out how 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 a couple of times a day to reset my cerebellum. After that once a week was sufficient and now, 18 years later, once ever month 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. Just do them whenever your balance is off.

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...

[Smiffy65 in reply to Smiffy65]

thebioengineeringco.com/ind...

[Kristyll]

Heck when she sees her consultant and ask if he can expedite her appointment. Good luck