Balance Post GK, CK or Surgery

[kathysjourney]

Hi all - I'd really appreciate info on anyone's short and long term post-treatment experieces with balance, particularly if you had some balance issues pre-diagnosis/treatment. I know Drs say that cutting the vestibular nerve creates a situation where the body eventually adjusts, but I'd love to hear from actual posties on that. They also say if there are balance issues before treatment, they will probably remain about the same after CK or GK.  I'd love to hear from those who have lived it. I do have dread of suddenly having a vertigo attack months after treatment while driving or something! I had one severe veritgo attack many years ago and never forgot it! With that said, I have apparently lived many years now with the AN diagnosed about a year ago, and have never had another severe veritgo attack. Perhaps it wasn't even from the AN or the affected ear! Thanks!

[Jim Scott]

Hi, Kathy ~

I'll offer you my experience with balance. 

In the months leading up to the doctor visit that precipitated an MRI scan which led to my AN diagnosis, my balance had steadily deteriorated to the point where I couldn't walk a straight line and stairs were a real challenge. Following my retrosigmoid approach surgery (3 weeks post-diagnosis) my balance was still a bit shaky.  I worked on it with a VNA PT nurse and did lots of walking in a local park.  Eventually, my balance stabilized.  It probably took about 3 months and some work on my part, which is fairly typical.  Today, some 44 months post-op, my balance is, by my admittedly unscientific measurement, about 85% of what was once 'normal' for me.  I call it 'serviceable'.  I don't walk crookedly or bump into corners anymore and I can walk up and down stairs sans handrail without much effort.  However, on the very rare occasion when I stumble, its much harder for me to regain my balance and although I haven't fallen, the risk remains.  Fortunately, this has only occurred a couple of times and I don't consider it a big problem.   

I underwent FSR 3 months after my debulking surgery and that had no effect on my balance, pro or con.  I believe this is typical with radiation treatment.  I can't speak to the possibility of a vertigo attack post-treatment (I've never had a vertigo attack) but I would assume that is relatively rare, but not impossible.   

I think the collective opinion would be that yes, post-op, balance does return (often, with some work) and if your balance is decent going in to radiation it should remain so, after.  I trust this information will be useful to you.

Jim

[Pooter]

Hi Kathy...

Here's my take on it.. Keep in mind that I didn't have CK or GK, rather had surgery... BUT from what I've read here on the forum is what I'm basing my comments on..  Everyone's different and has a different journey yadda yadda..  But, my understanding is that if you have balance issues before CK or GK then they aren't likely to get significantly better after treatment with CK or GK.  At least not immediately, presumably you could learn to cope against any problems you have.  Part of the reason for that is that the nerve that controls balance (vestibular nerve?) is left in tact and damaged.  The fact that you have prior balance issues would suggest that the nerve is already damaged.  Having radiation treatment won't alleviate the pressure that the AN is putting on that nerve so it will continue to be unruly.  I liken it to a water hose that's being kinked partially closed.  Think of the water as the electrical impulses that is being sent via the nerve to the brain to control the balance..  With CK or GK you're not relieving the kink and therefore incomplete or faulty electrical impulses are sent to the brain.  True you have two sides used for balance, but when one side is sending bad data to the brain, it isn't sure what's real and what's not; so it never can fully compensate.  Contrast that with surgery that might indeed remove (or cut) the vestibular nerve on that side..  Now, it no longer can send bad data to the brain, so your brain learns to compensate by only relying on one side..

TO ME, with pre-existing balance problems, you're likely to get more restabilization to balance problems with surgery over radiation..  If you have no pre-existing problems, then the chances of having them post surgery (at least for a little while) is probably slightly higher with surgery over radiation.

Again, my take on the comments that I've read on the forum.. I welcome anyone to correct me if I've misunderstood what's been posted on the forum on this topic.

Regards,
Brian

[leapyrtwins]

Kathy -

I can only speak to surgery - because that was my treatment choice.

When I was diagnosed with my AN, I had no idea that I had balance issues.  However, when my doc had me do a few simple tests in his office, I found out that I did.

The body adjusts fairly quickly and fairly well post op.  I still have the occasional issue when I'm very tired, very stressed, or I'm walking in the dark.  Other than that, you'd never know I had a balance issue prior to surgery.

My doc (neurotologist) gave me some vestibular exercises to help with my balance.  He had me do them prior to surgery so it would be easier to do them post op when my balance would be even more compromised.  They worked well for me, and although he offered to send me to physical therapy after my surgery, I didn't have a need for it.

If you'd like a copy of the exercise, please PM me your email address and I'll send them to you.

Jan

[sgerrard]

I can think of one forum member, Tumbleweed, who had balance issues before CK, which continued a while after, but then cleared up. I can think of another member, MaryBKAriz, who had balance issues that did not clear up after CK. She went into business making decorated walking canes (lemons => lemonade).

I suggest that you get a work up at a vestibular lab, where they can evaluate in more detail how much your balance is compromised, and to some extent where (upper or lower branch of the nerve). Then get with an experienced CK practitioner - this is where the experience matters - to see what they think your outcome would be.

Also get on the cyberknife forum, if you haven't already, and ask the doctors there. (http://www.cyberknife.com/forum.aspx).

Steve

[msswartz]

Hello,

I had surgery Nov 23, 2009 so I'm about 2-1/2 months post op now.  My CN8 nerve was cut after it died during tumor extraction.  My hearing and balance function on my right side is completely gone.

I returned to work in January 2010 and have been doing ok since except of course the facial paralysis, loss of hearing, eye trouble, trouble with writing, typing and lastly my balance.  My balance was pretty normal I thought before surgery.  I could right a bike, run up stairs, and walk on a parking stop block with my arms outstretched.  I was no high trapeze artist, but I was pretty normal I thought.  Immediately post surgery I could not walk unassisted.  I needed a walker.  After I left the walker, about 1 week post op, I was pretty wobbly and needed a hand oh my arm, then I graduated to an hand on my shoulder and then my wife would just watch me and tell me to look out for things.  Soon, after two weeks or so I could walk up and down stairs without holding on.  I still wander off course and take a wide arc when making corners or have to correct my course on uneven ground, etc..  but I bump into walls a lot less now than I did.  And it seems that I am more stable when I am walking faster and wander more when I'm going slow.  I don't know why.  At 2-1/2 months I have not tried riding a bike yet, but I might this weekend if the weather is ok and see how I'm doing.

That's been my experience so far.  I hope that helps.

Michael

[jaylogs]

I am two months post op now (surgery...middle fossa) and I didn't have too many issues with balance before I went in, except for a couple of days where the entire room spun for the whole time.  I had a LOT of balance issues after surgery, but not so bad that I needed a lot of help to walk.  At this point I still am having them, which is MORE than I did before surgery but I feel it's getting better day by day, albeit a bit slowly. 
Jay