Can anyone explain balance issues?

[Twindy]

Hello, I can't quite comprehend what it will be like to have balance issues.  What does it feel like? How does it get better?  Do you need a walker post-surgery?

[TJ]

Each person has different problems with balance depending on where the AN is located.  I did not have surgery but had CK.  My balance is off, as an example I cannot walk a straight line.  I also have some swaying when I try to stand still.  Neither is to bad but again some have it a lot worse.

TJ

[Jim Scott]

Twindy ~

'Balance issues' is a rather broad term that covers a wide spectrum of what we know as equilibrium.

It can include not being able to walk a straight line to not being able to stand in one place without holding on to something. It often is accompanied by a 'wonky head' sensation that is difficult to describe but can be compared to having a few drinks (when you're not used to drinking alcohol).    For me and others, a lot of self-directed PT aimed at improving my balance helped.  I walked on uneven surfaces for at least a mile every day (it was summer).  Others do more 'formal' exercises or have a Physical Therapist aid them (I had one for 5 home visits, then she 'discharged' me).  As you can see, each AN patient's experience is different.  Now, almost 6 years post-op/radiation, my balance is quite serviceable but if I stumble (very rare) I can lose my balance quickly if I can't hold on to something to steady myself.  However, I can walk up and down stairs without needing to grasp the handrail, escalators are no problem and I still do a lot of walking - mostly in straight line. 

I trust you'll have a similar experience. 

Jim

[Twindy]

Hmm, this is just hard for me to grasp, but I guess I will get to experience it for myself.  You can walk ok?  Just not a straight line?  Do you run into things?  How is it when sitting down?  Do they recommend walkers or canes at first?  Also, anything I should know for working on getting it back?  I assume the more you can do early the better? 

[Twindy]

One more thing--I don't feel I have any balance issues now, but my dr. said he thought I probably have but have compensated.  Wouldn't I know if I have current balance issues? 

[mk]

Twindy,

the only way you can really tell if your vestibular nerve has been already compromised is by taking a balance (VNG) test.
I had a relatively large tumor, which obviously grew very slowly over a period of many years, and I had never experienced any balance problems. Even when the neurotologist examined me thoroughly, he said that my balance looked "pretty darn good". But when I took the VNG test, the result came back as 89% weakness on the AN side. In short, my balance was almost totally gone, but this happened so slowly that the other side compensated. I had no balance problems after surgery. They always provide a walker at the hospital for use immediately after surgery - I only used it for a day or two, and mostly because my legs felt weak.

On the other hand, some people with very small tumors experience very intense balance problems - so every individual is unique. If you have a working nerve, then it is more likely to experience problems, at least in the short term.
There is no real way to predict what will happen after surgery, but my neurotologist had explained that the result of the VNG test can be a pretty good predictor (i.e. if your balance is already gone, then most likely you won't experience balance problems afterwards).

Marianna

[Brewers7]

I had extreme complications and ultimately used a walker for a while (no aid now).  It seems that most post people do not require a walker.  If you do, the hospital will take care of that.

[Jim Scott]

You can walk ok?  Just not a straight line?  Do you run into things?  How is it when sitting down?

I walk in a straight line.  I do not run into things.  Sitting down is perfectly normal and presents no problems at all. 

As I stated in my previous post, each AN patient will have a different experience based on a number of factors including whether their vestibular nerve has been severely compromised.  If so, the remaining nerve will likely have already begun to 'take over' (balance) and regaining somewhat normal balance function will not be too difficult.  This was my experience. 

However, for those AN surgery patients who still had some functionality in the affected vestibular nerve, the sudden loss of the vestibular nerve function on the AN-affected side will make regaining balance more of a challenge, although one that can be met.  Many do,

Do they recommend walkers or canes at first?

Only if necessary.  I had a (borrowed) tripod cane ready when I came home from the hospital - but had no need of it. 

Also, anything I should know for working on getting it back?  I assume the more you can do early the better?

 

Correct.  As I mentioned, there is 'formal' PT and many do their own version of it, as I did.  Whatever works.

Jim

[MNTim]

Twindy,

As everyone has stated each person's experience differs but here is mine.  I have had three surgeries and my balance was affected more after each with the worst effects coming from the last, a translab.  After my first surgery I don't recall noticing any issues.  After my second I was unstable when there was not something to hold onto like climbing bleachers.  I remember that example because my son was in baseball season and I tried to stay on the bottom row for fear of falling on someone.  After my last surgery I used a walker in the hospital for the first few days before I developed enough courage to walk without it.  After leaving the hospital I quickly became more stable and participated in vestibular therapy where I learned a lot about how the vestibular system works.  I still have trouble standing on one foot, I periodically bounce off walls and am not excited about uneven surfaces but I am compensating.  Like Jim I can walk up stairs without holding the rail, that took awhile.
My advice is to be honest about how you feel and understand the effects and areas that intensify unsteadieness like dark rooms. There was a link to an explanation of the vestivbular system posted last summer.  I will add it to your topic.

Best,
Tim

[MNTim]

Great article

http://www.hearinglosshelp.com/articles/balancesystem.htm

[Twindy]

Thanks for sharing everyone, I feel I have a better idea of what this may (or may not if I've already compensated as Marianna) feel like.  Thanks so much for the article Tim--a great explanation.  It also addressed memory issues which was helpful and interesting as I was just commenting about that.

[ppearl214]

I've met Jim numerous times (and his loverly wife!) and the man walks in a straight line. I'm jealous.  Me, on occassion, due to my AN, becomes a "wall walker" and will walk along a wall and use my fingertips along the wall to help steady my gait.  I have other medical issues that cause me to use a cane when I walk (NOT due to my AN) but when I'm in the house (I don't use my cane in the house), wall walker and dang it, I'm good at it!

Like walking like a drunk without the drink.

As noted, some have this issue..... some don't.   "Individual results may vary"

Phyl

[Lynn Mc]

Tim,

Thanks for re posting this article.  As many times as I have read it I really needed to read it again. 

http://www.hearinglosshelp.com/articles/balancesystem.htm

Twindy,

As everyone has stated we are all very different.  I was very unstable while I was in the hospital.  Used a walker.  When I got home I switched to a cane for a very short time.   Was walking on my own in no time.  Flash ahead to today and most people would not notice my balance issues.  I still on occasion bump into walls, cut corners completely wrong (bruised shoulders!), I still have some BOUNCY vision and can walk like a drunk with the best of them.  These are all MINOR inconveniences!!  It is amazing how our bodies learn to compensate for our short comings!!!   

Good luck on you journey,

Lynn