no function in vestibular nerve after radiosurgery

[mattsmum]

i have been really struggling with balance probs from 4 moths after radiation (had some before). had VNG today as therapist puzzled; it showed no function on AN side at all, and failure of the brain to compensate.
she says i need to see balance specialist, so i am waiting for an appointment. i gather this is unusual after radiation.
anyone else have similar experience?

vikki

[nftwoed]

Hi;
  I think absolutely no balance function left after Linac would be highly unusual. One might have canal paresis, but if there is actual nerve damage, I would suspect a Tx error. After GK, maybe somewhat more likely.
  If there is no compensation after 4 mos, the ENG should have revealed that on the good side also.
  Gee, Vicki; I'm sorry to read this, but what is done is done. Maybe you'll experience improvement yet. The body is a fussy, but amazing machine!
  Yes; Probably some more testing and VRT ( Vestibular Rehabilitation Therapy ) may help.
  I wonder about a run of steroids? Have you had your follow up MRI yet?
 

[TJ]

Vikki

I was told that after radiation to expect balance problems for up to 1 year.  I was also told by my doctor that after that time they expect my balance to be pre radiation status.  I am six months past radiation and I am having balance issues but since they told me that this would happen I am just riding it out for now.

TJ

[sunfish]

I had significant balance problems from about 3 to 11 months post-CK.  Problems have decreased significantly, and fairly abruptly, in last 4 months. I still have problems in the dark, with certain footwear, in some stores, etc.  So there's hope!

[mattsmum]

hi all - thanks for all your words of encouragement.
i had a course of steroids; but no improvement in balance.
talking of post radiosurgery patients in general my ent said that by 2 yrs the balance would be stable - and though it might not be 'normal' it should not be disabling as long as i did the vestib rehab religiously (i am 10 months post now). i was not warned before that balance may be an issue after treatment which i do find a little annoying now.
my vestib therapist is starting to talk of the rehab being pointless if my brain is not compensating (as shown by the vng tests , not just symptoms) by now.
anyway - i will keep up the rehab until i have seen the consultant and hope for the best!

vikki

[CHD63]

Vikki .....

my vestib therapist is starting to talk of the rehab being pointless if my brain is not compensating (as shown by the vng tests , not just symptoms) by now.

vikki

I totally disagree with this.  I have no vestibular function on either side (from retrosigmoid surgeries on both sides) and vestibular rehab helped me tremendously with adapting to using only my vision and sensorineuro responses (feet/muscles) for input to remain upright.  Lots of vision stabilization exercises and overall strengthening of my core and leg muscles.  It created a much greater awareness of how my muscles feel when I am stable.  A little bit hard to explain, but I would most definitely take advantage of the services of a trained vestibular therapist.  A physical therapist not specifically trained in vestibular therapy does not have the needed to skills to help you as much.

Best wishes.  Clarice

[mattsmum]

clarice - thanks for demonstrating that good vestib rehab really does work, as my ENT said! i am certainly keeping on with the rehab and i also do pilates to develop core strength.
to be fair the therapist who gave me the impression that the exercises may not be useful is not the hearing therapist who specialises in balance.  i am now waiting to see her in a joint clinic with an ENT doctor who also specilaises in balance problems.
thanks again for relaying your positive experience,
best wishes,

vikki

[sunfish]

Clarice, I've always wondered how you operate with NO vestibular systems.  But that makes perfect sense - you've trained your visual system, etc. to compensate.  A few months ago, I talked to my general physical therapist about vestibular therapy, and she said it definitely requires a specialist.

Stay active - I'm certain that's what has helped me overall.  Don't lose hope - I started getting a teeny tiny bit better in January/February, and then ABRUPTLY got better in March.

[mattsmum]

i saw balance specialist today - he was reassuring that although i have lost all vestibular function on left, and compensation has been slowed by cerebellar compression from tumour, that i will compensate (in time with lots of rehab). he said although i will always have some difficulty with darkness, and rapid head turns to left i will not be disabled, and will be able to walk without a stick. even thought i might be able to drive at night in time. when pressed for how long he said maybe another year. so - good news at last! my hearing test today showed profound high frequency loss (-110dB) but i was expecting it to be worse so i was not alarmed by that (unlike the tecnician who i think expected me to fall apart...). now waiting with anticipation for hearing aid!

vikki