ballance question

[targa72e]

HI Everyone,

I have a balance question. First some history. I am just past one year wait and watch. One year MRI showed no significant change. I have had my hearing improve over the last year but started having minor balance problems at 6th months after diagnosis and have had a numb spot on the right tip of my tongue for 3 months. I decided to have some additional testing to check my balance and narrow down what nerve the tumor is on and if it has damaged any other nerves. I had VNG (water in the ear), rotational chair, ABR and VEMP. All the tests except the VNG were normal indicating I have no damage to the cochlear nerve or the inferior Vestibular nerve. My VNG testing showed that the AN side tested 40% less than the non-AN side. This would tend to indicate that the tumor is on the superior branch of the vestibular nerve. The normal rotational chair result would indicate that I have compensated for the loss on the AN side. I was told that because my tumor is small that if I had surgery that they would probably only remove the superior part of the nerve.
Now my question for those who have had surgery. I am looking to see if anyone had the following circumstances:
If you had some balance loss before surgery (state difference side to side if known)
If with surgery you had only the superior vestibular nerve removed.
How much different was the feeling of being off balance before (some loss) and after (total loss)?


Thanks

John

[Brendalu]

John,
I am fourteen months tomorrow post op.  My only symptom of anything being wrong was my balance and it had been bad for eight years at least.  I always walked at an angle and fell alot.  Mentioned it to many doctors but the smart one sent me for an MRI.  Since the surgery I have broken an ankle, dislocated my shoulder, sprained a knee, both ankles and both wrists and have legs and arms so black and blue I look like a poster child for elder abuse.  I have tried PT, but after falling off a stationary bike three times in one hour, I'll do Boppie's trampoline, thank you very much!  I am also very dizzy now and have severe headaches.  I really don't think the surgery made me better.  If I had it to do over again I would be a waiter and watcher for a long time.  My AN was large , so I couldn't have really waited much longer.  I have a droop in my smile and have developed TMJ.  I also have MS.  I have so much fun every day, but I'm still thankful I can hear birds chirp and smell the freshly cut grass and feel the raindrops fall.
BrendaO

[nannettesea]

Amen to Brenda.  1 year post-op, dizziness worse than ever.  Trying not to be bitter.  Wait and watch would have been my best choice....
Nan

[Brendalu]

Nan,
I think you and I are in the same boat.....maybe we will both see improvement soon.  It can't come soon enough for me!
Hugs,
BrendaO

[vcschaub]

My only symptom prior to surgery was lack of balance, feeling of movement when I was still, etc. My surgeon felt that because of that my an was probably situated on the superior vestibular nerve. It turned out that it was on the inferior vestibular nerve. It was small at 6 mm but sitting right on the inferior vestibular nerve. My balance would worsen and then remain pretty stable off and on prior to surgery. After surgery I had very few issues - no dizziness, just a little unsteady walking (I used a cane for about 3 weeks). It is now almost 10 months after surgery and I am doing fine. Once in a while I get an unsteady feeling but it usually associated with a fast movement. My surgeon felt that my non an side (left) had already taken over for the an side (right) prior to surgery. Therefore, cutting both balance nerves on the an side did not disrupt me. My surgeon told me he had found that is easier to recuperate when the balance nerves on the an side are cut rather than leaving them and coping with malfunctioning ones after surgery.

[Road Trip Dale]

John,

I am 4 months post-op (translab on right side).  One of the reasons for choosing the surgery over other options were tests done prior to decision.  My good side had compensated 54% of my balance, and I had a 60% hearing loss in the bad ear.  I've found that my balance is actually better now than before the surgery.  Doc says its because the brain is not getting mixed signals.  I am SSD (single sided deaf) but I really haven't noticed that much difference.  They say that my balance will only get better as time goes on.  Immediately after surgery I had 2 weeks of unsteadiness, but have now found there really isn't anything I can't do, whether being riding roller coasters/amusement park rides with my granddaughter, swimming, riding my bike, or hiking along a 1,000 foot gorge in Colorado.  I keep trying to find something I can't do, but it hasn't happened yet.

Good luck on your decisions and on the results

Road Trip Dale