Balance Issues - an A.N overview

[tony]

There have been a few questions lately re balance and why is
it now so poor etc. So in laymans terms...
Basically the body has two balance nerves left and right
which are co-ordinated to work together by the brain.
They are located on/very near, the hearing nerves.
An A.N. located on or near here causes a disturbance
Any Operation or Radiotherapy near here can cause swelling
and further malfunction. NF2, Surgery, or Radiotherapy can completely
destroy the nerve.
Often one good nerve (only)  vs. one good and one not working well
- is often much better - a misfiring nerve (often) causes more problems.
 The Body can adjust to the total loss
- and operate on the one nerve
the brain now mixes the signals from the one nerve and what the eyes tell it
( a visual point of reference).
It follows that this does not work so well when its dark
- or if you are drunk ! (or low blood sugar/fluids or just tired)
Generally single nerve folk sense fatigue more - and have to take a simple
rest more often. (the extra work in the brain seems to cause this)
You can train the body to adjust quicker and better by exercising the
balance (in safe and controlled conditions)
The recovery time Post-OP etc is anything from a few days to 12mths
depending on the extent of the work involved.
There are NF2`s walking around with NO balance nerves at all (??)
so it can be done...(no, I dont now how, either)
Finally a change of lifestyle means "no more ladders"
or anything where a sudden loss of balance might cause
further injury (I was heart broken...)
Topline - you can train/adapt yourself back to 95%
but the remaining 5% is best avoided
Hope this is useful
Best Regards
Tony

[Kilroy1976]

Very good post! One thing that I would add:

There is a third balance mechanism that the brain can rely on, that being input from the muscles. As the muscles work against gravity, the brain can pick up which muscles are doing what and determine which way is down. This can explain why many people with vestibular nerve problems have difficulty riding in a car. In a car, the body is moving forward, back and side-to-side without action by the muscles, making the muscles much less valuable as a stabilizing influence.

[Road Trip Dale]

Interesting synopsis Tony...I'm 3 months post op and have no balance problems whatsoever during daylight hours.  I can still bound up a ladder, I ride my bicycle every day, I can go on amusement park rides with less distress than the others around me.  But, I get downright whoosy when I go to the movies.  Entering and exiting the darkened theatre always has me hanging on to the side rails and walls until I get back to the lightened foyer than I'm okay again. 

Very informative Thanks

Road Trip Dale

[Brendalu]

Very interesting!  I have not had it explained to me this way..  My surgery was 7/28/05, and my blance is still the pitts even with PT.  I had some more tests run and found out that I am reactive hypoglocsymic.  When it rains, it pours.  Any suggestions?

[FlyersFan68]

This topic has always amazed me. We can function without both vestibular nerves since the eyes and muscles reflexes in our body can compensate for these losses but my guess would be that this would require extensive training and rehab. It's amazing how our body can learn to adjust. If I remember correctly...when I started watching dancing with the stars,  Kelly Monaco mentioned losing vestibular function while scuba diving and still went on to win the competition. Someone on this site (sorry I forget who) mentioned a neat website called BrainPort. BrainPort claims to be working on a device implanted in the tongue that could provide balance information to the brain thus restoring what was once considered gone. I believe they are looking for NF2 patients with 100% vestibular loss. This may also help the blind and completely deaf one day too. I had my right side vestibular severed during surgery and at first was very challenging. Two and a half years later I continue to do all the things I used to do such as climbing ladders, roller blading, all sports etc. etc.  It's been a while since Ive been on this site because it gets a little easier to forget as time goes by but I do have my second post surgery MRI later this month and I'm starting to think about it again. I hope everything is fine and the doctor tells me to wait like five more years for another. Sometimes I just don't want to know anything anymore. Take Care Everyone!
Steve D

[tony]

I think this is the term where low blood sugar levels give poor
reactions/fatigue etc  - I think anyone with diabetes would understand it.
Yes I do understand it seems to affect the single balance nerve
folk more than before any OP or similar.
I find I DO have to watch the sugar levels more than before
- and not push it too much or there are consequences.
Its unclear if its "whole body" tiredness or simply overload/underfuelled
somewhere in the system - but its definately there.
Best regards
Tony

[Captain Deb]

I truly believe that if you are an active person (hiking, rollerblading, running, kayaking, etc) going into AN treatment and losing one vestibular nerve----you have a better trained vestibular system in the first place as opposed to a person who has a rather sedentary lifestyle. Thus your recovery will be easier, especially cuz you want to get back to doing all those things.
Recovery for a sedentary person is much more difficult, because their vestibular systems are undertrained to  begin with. It requires a major lifestyle change to get to walking daily or twice daily or joining a gym and working out on a treadmill (my favorite balance challenger) or buying a good treadmill and actually using it!
Captain Deb

[BB]

TONY THANKS FOR THE INFO.  I WAS WONDERING WHAT EXERCISE YOU ARE REFERRING TO. THE ONLY EVERCISE MY DOCTOR GAVE ME WAS JUST MOVING MY HEAD FROM SIDE TO SIDE.  I AM JUST INTO MY 5TH WEEK OF RECOVERERY.  LOST HEARING ON MY RIGHT SIDE.  I'M TOLD I AM DOING PRETTY GOOD FOR THIS TIME OF RECOVERY.  SOME TROUBLE WITH MY EYE AND HAVE TO HAVE DROPS.  I HAVEN'T WROTE ON THE THIS WEB SITE MUCH.  WASN'T SURE HOW TO USE IT FOR SURE, BUT READ IT OFTEN TO KEEP INFORMED. NO ONE CAN UNDERSTAND WHAT THIS IS LIKE, EXCEPT FOR EVERYONE ON THIS SITE.  MY HUSBAND JUST GOT LAID OFF WORK, SO THIS IS A SET BACK FOR ME AND MY PROGRESS, AND ALSO LOST MY HEALTH INSURANCE.  I NEED TO GET TO WORK SO WANT TO DO ALL I CAN TO GET STRONGER AND DO WHAT I NEED TO DO TO GET STRONGER.  SORRY FOR THE MISTAKES. CAN'T STAY ON THE COMPUTER FOR VERY LONG, AND NOT SURE I AM USING THE WEB SITE CORRECT TO ASK YOU THESE QUESTIONS.  I AM WALKING PRETTY GOOD, SOME DAYS BETTER THAN OTHERS, BUT FEEL VERY INSECURE WHEN I WALK ALONE, JUST STARTED DRIVING SHORT DISTANCES.  YOUR POST WAS HELPFUL AND USEFUL TO ME.  THANKS, BILLIE

[Kathleen_Mc]

Branda: Going around with periods of hypoglycemia certainly would increase the imbalnced/dizzy sensation you have. I went through a period of having frequent hypoglycemic reactions.....they never did determine why but it resolved itself. Apparently this may be a precursor to developing diabetes later in life (the lucky thing about this through was it was during the investigation as to why it was happening that the doctor's determined I should be having follow up MRI's and my regrowth was found in a small stage!)
Kathleen

[tony]

Reply to Billie.
Firstly any exercise you do has to be "safe" in as much that either someone is
with you - or if you do fall, it will be a soft landing.
I am a keen golfer - it combines balance, concentration and co-ordination
(and sometimes a 5 mile walk as well !)
Basically ANY  exercise that combines the balance, concentration and co-ordination
will be good for you,  Ballet training ? for example.
I would suggest you start small and build up
my first post OP golf game - we did three holes (20mins?)
I can now do (18 mths later) 5-6 hrs with no issues.
Sometimes I beat folk who have two balance nerves
(they do get a bit iffy about that though).
Look at your own favourite pastimes - I am sure one of them
will assist in this way.
But I would avoid Horseriding, cliffclimbing, or Hangliding for
a while yet !
Good  Luck and
Best Regards
Tony

[Jeanlea]

This is a good site for more information vestibular rehabilitation.  www.vestibular.org/index.php

 Jean

[Captain Deb]

The best balance retrainer is just walking!  If you feel unstable walking alone, get a walking partner--a friend or your hubby to go with you.  I walked 3x a day starting at 3 weeks post op--at first with someone and then at about 5 weeks, by myself, but had a cellphone and stayed close to home--just walked around and around the block.  I had to recoop in Florida as my op was in January and we live on an unpaved windey mountain one-lane road--not a great place to walk in February! As I got better at walking alone, I started doing what I call the "Bobblehead Strut"--walking while doing head turns and trying to focus on distant objects.This became my major project during this time--walking and resting, walking and resting.
Good Luck to you!
Capt Deb

[HeadCase2]

  The thing that surprised me about losing a vestibular nerve (as expected) was not the effects on balance, but rather the other things that go along with the vestibular system.  For example, the vestibular system helps stabilize vision, acting like the anti-vibration compensation in some digital cameras.  I don't have balance issues so much, but do have vestibular issues.  When I run, vision jumps around a bit, and it takes an extra moment to focus on something.
Regards,
 Rob

[Boppie]

Yes, I agree the herky jerky sensations you get when your eyes jump is most troubling.  The only way I can escape the head quaking feeling is to walk on the balls of my feet and hold my head and shoulders fully erect.  When I plod along (as in moring trip to the br) I look just like a person with a muscular disorder (a drunk?).  The scarey part is how will I feel at age 75?

I am trying a mini trampoline for balance challenge.  Really hard right now! Music helps.

Running is still a joke for me.  But I watched a younger woman run, and she is not a AN patient.  She can't run either! 

I still don't complain.  My words of wisdom are so much more weighted these days.  

[Boppie]

I forgot to mention, looking up in the sky at a plane overhead, and hanging wallpaper along the ceiling line are my 5% losses.