ANA Discussion Forum

Post-Treatment => Balance Issues => Topic started by: tony on July 25, 2006, 12:52:41 am

Title: Balance Issues - an A.N overview
Post by: tony on July 25, 2006, 12:52:41 am
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
Title: Re: Balance Issues - an A.N overview
Post by: Kilroy1976 on July 25, 2006, 05:02:34 am
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.
Title: Re: Balance Issues - an A.N overview
Post by: Road Trip Dale on July 25, 2006, 08:04:31 am
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
Title: Re: Balance Issues - an A.N overview
Post by: Brendalu on July 25, 2006, 08:28:16 am
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?
Title: Re: Balance Issues - an A.N overview
Post by: FlyersFan68 on July 25, 2006, 09:16:18 am
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
Title: Re: Balance Issues - an A.N overview -hypoglocsymic ?
Post by: tony on July 25, 2006, 09:35:31 am
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
Title: Re: Balance Issues - an A.N overview
Post by: Captain Deb on July 25, 2006, 10:14:08 am
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 8)
Title: Re: Balance Issues - an A.N overview
Post by: BB on July 25, 2006, 10:22:56 am
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
Title: Re: Balance Issues - an A.N overview
Post by: Kathleen_Mc on July 25, 2006, 10:31:15 am
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
Title: Re: Balance Issues - an A.N overview
Post by: tony on July 25, 2006, 11:13:17 am
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
Title: Re: Balance Issues - an A.N overview
Post by: Jeanlea on July 25, 2006, 11:13:36 am
This is a good site for more information vestibular rehabilitation.  www.vestibular.org/index.php

 Jean
Title: Re: Balance Issues - an A.N overview
Post by: Captain Deb on July 25, 2006, 11:42:33 am
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
Title: Re: Balance Issues - an A.N overview
Post by: HeadCase2 on July 25, 2006, 01:31:00 pm
  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
Title: Re: Balance Issues - an A.N overview
Post by: Boppie on July 25, 2006, 10:15:08 pm
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. ;D 
Title: Re: Balance Issues - an A.N overview
Post by: Boppie on July 25, 2006, 10:24:12 pm
I forgot to mention, looking up in the sky at a plane overhead, and hanging wallpaper along the ceiling line are my 5% losses. :(
Title: Re: Balance Issues - an A.N overview
Post by: Kilroy1976 on July 26, 2006, 04:42:33 am
I forgot to mention, looking up in the sky at a plane overhead, and hanging wallpaper along the ceiling line are my 5% losses. :(

Amen. The sky is not my friend these days. :P
Title: Re: Balance Issues - an A.N overview
Post by: chopper on July 26, 2006, 07:02:51 am
I'm curious, with the talk of blance issues, has anyone here ridden a bike or motorcycle at all post-op?  It's one of those things that I'm wondering if I'll still be able to do after my time comes...
Title: Re: Balance Issues - an A.N overview
Post by: Patti on July 26, 2006, 07:25:37 am
Chopper-I tried my bicycle a few months post-op and didn't feel confident.  I put the idea away and did other things for years.  The other day I tried my bicylce again and fell down and hurt my leg after 20 feet.  It happened when I turned my head to check for traffic.  I got on again but could not manage to slow down to make a u-turn.  Biking doesn't mean that much to me so I am not going to bother trying again.  I do many other things though.  Patti
Title: Re: Balance Issues - an A.N overview
Post by: Jeanlea on July 26, 2006, 08:08:37 am
Chopper,

I was able to ride my bike again after 8 months post-op (and all the snow had finally melted).  I was a little wobbly, but didn't fall.  I've also ridden on the back of my husband's motorcycle with no problems at all. 

Yesterday I crawled out the upstairs window to get on the porch roof so I could clean out the gutters.  My son came with me.  He told me not to fall of his aunt would never forgive him.  lol  I had no problems at all on the roof.  I do tend to take more care doing those types of things though.  Haven't really found anything that I could do before surgery that I cannot do now except for jumping in a pool of water since my eye won't close on its own quickly.  The other day I saw some planes flying over in formation.  I can look at the sky as long as I'm standing still. 

Jean
Title: Re: Balance Issues - an A.N overview
Post by: ppearl214 on July 26, 2006, 09:18:28 am
Radio-surgery (plus Chiari 1) has really thrown my balance for a loop as well... seems to be common amongst radio-patients.  As previously noted here, darkness (gawd help me if I'm walking my dog at night AND have to bend over to scoop her mess!), driving at night, etc.   Am doing low dose valium (Vitamin "V") 3x/daily and it does seem to help a bit...

watching this thread for all responses so I can work with my dr regarding this issue.....

Phyl
Title: Re: Balance Issues - an A.N overview
Post by: Boppie on October 25, 2006, 10:53:10 am
BB, I had the same doctors and surgery in Houston in Decembr of 05.  I've read your post about your progress.  Yes, I agree stress makes recovery harder.  It sounds as if you are getting on top of it though.  I can only suggest that you try to keep a really upbeat attitidue about your daily routine.  The head motions from side to side are still very helpful.  I walk up and down my own sidewalk in front of my house to feel more secure.  I stop in front of my own mail box, hold onto it, and give my head another gentle shake at the beginning and end of each walk. 

I had a major family event in the late spring and all through the summer I had to travel back and forth to Chicago to suppport my daughter in her divorce matters.  While I was going through this time I neglected my exercise routine and rest.  Although I came through the ordeal with her, I ran into some stale issues with my balance and fell into a mild depression.  Mostly, I just sat and stared into space a good deal and found that I couldn't get my self into projects each day.  Thank God for the support of my family and their concern.  Since the ninth month post op I have regained my balance and I feel stronger than ever.  My taste bud issues have finally resolved. 

We are each stronger than we know.  I do a fair amount of praying, but I believe that we have to take action and the resolve to heal ourselves.  I am glad that you had such wonderful doctors.  Dr. Vrabek is such a sweetheart!  I go for my one year MRI November 15 and I have a new TransEar hearing aid.  Please write and let me know how well you are doing.  Maybe we will meet some time!
Title: Re: Balance Issues - an A.N overview
Post by: FlyersFan68 on October 25, 2006, 12:48:42 pm
Here is an interesting link regarding balance function and exercises:

http://www.nfauk.org/nfauk_downloads/nf2-factsheets/understanding_balance_in_nf2.pdf
Title: Re: Balance Issues - an A.N overview
Post by: ANinWV on October 26, 2006, 11:43:05 am
AninWV

Interesting reading...          Besides the dark I get really woozy when I look down from heights which we have plenty of in mountaineer country. OK looking out just not down!!!
Title: Re: Balance Issues - an A.N overview
Post by: Brendalu on October 27, 2006, 07:04:25 am
I've ridden on the back of my husbands motor cycle once since surgery.  I had to hang on for dear life, the noise was horrendous and I closed my eyes for most of the ride.  Will I do it again?  Yep, but I'm installing a seat belt and getting better ear plugs.  I'll be darned if I am going to give up everything I love just because of this AN journey.  I fall off the staionary bike in PT all the time.  Just can't get the hang of it.  I could post my bruises tofor show and tell!
BrendaO