GK and balance nerve issues

[amye]

Hi;

Has anyone out there with pre-treatment balance issues had a good experience with GK? There seems to be no published data suggesting that GK helps with vertigo, etc. but also no data suggesting that it makes balance issues worse. However, anecdotally it seems to have the reputation for creating more balance-nerve-related havoc.

Not sure if this is the right place for this post...

Amy

[sgerrard]

no published data suggesting that GK helps with vertigo, etc.
also no data suggesting that it makes balance issues worse.

I think that about sums it up. My impression is that radiation treatment is balance nerve neutral; it usually doesn't make it better or worse.

Steve

[amye]

Thanks, Steve. That's what I keep hearing. I wonder why? It seems like stopping the growth would stop the irritation on the nerve and allow for compensation from the other side...

Should I ask this in the "Treatment" section?

Amy

[sgerrard]

It seems like stopping the growth would stop the irritation on the nerve and allow for compensation from the other side...

Stopping the growth will stop further damage to the nerve. However it doesn't repair the nerve, so you are left with a partially functioning nerve, and that is what causes the problems. Surgery usually takes out the balance nerve completely, so the other side is it on its own and can compensate with time. With a partially functioning nerve, though, you continue to get false information from the AN side, and that is tough to get used to. You want the nerve to be functioning at near normal, or not at all. You don't want it stuck half way in between.

Steve

[amye]

That makes sense. Just seems like there would be some compensation along the way, too.

Really limits treatment options for those of us with dizziness issues. That's a bummer.  I really want to avoid surgery if I can, but I'm beginning to feel less hopeful about that. Seems crazy to have surgery just to have the balance nerve taken out, when the tumor itself is so small and posing no immediate threat. And I will likely lose hearing (at least to some degree) in the process.

Wish I could stop thinking about this for awhile...

Amy 

[sgerrard]

Seems crazy to have surgery just to have the balance nerve taken out

It does, doesn't it? There are some other options, but I'm not sure how great they are. One is to have a simpler surgery (a labrinthectomy), but I think you can lose hearing with that. Same for gentamycin injections. In some ways, the best thing would be if the AN would finish what it started, and knock the balance completely out. Maybe it is worth watching and waiting to see if that happens.

I think you are right, the brain will compensate in time, even if there is a bad nerve signal, assuming it can figure out which one is bad. MaryBKAriz (Mary) had dizziness before and after CK treatment (she had already lost the hearing). A year later she is doing better, anyway, as far as the dizziness. It is worth noting, though, that she has made a little business out of making canes, which says something about how the dizziness has affected her. Here is a link to her whole story:
http://anausa.org/forum/index.php?topic=6523.0

I guess it is hard not to think about it if you are experiencing vertigo. That's pretty hard to ignore.

Steve