Does Balance nerve always die with radiation?

[stoneaxe]

I hate to be a fly in the ointment but my experience is that it may continue working partially and that makes it difficult for your system to adjust to a new normal. Kind of like having a short circuit in your head. After proton beam I experienced significant balance issues that came and went seemingly at random. I managed to minimize my problems with extreme balance therapy but it never stopped being an issue completely. Then when my tumor began to grow again I had it removed. After complete removal of the tumor and the vestibular nerve my balance returned to normal. Only time I ever have any issues now is when I have a head cold.

[ANcoleader]

My understanding of CK is that the tumor gets larger before it shrinks.....many of the people that I have come in contact within our support group have had issues for quite some time with the balance as the others that have gone for surgery that have lost their balance nerve learn to do exercises for balance to compensate for the loss of the nerve.....they then adjust accordingly.  It seems those that have had CK are just never sure how long this issue will be ongoing as the tumor does not shrink for quite some time.

[Tisha]

And, more often than not, it never shrinks.  I read that it's quite normal for it to just stop growing, or even sometimes swell up from radiation, and then never shrink...but then never grow.  I believe shinkage is actually in the minority to just no growth.

[sunfish]

Yup, Tisha, that's what my neurosurgeon said too about tumors treated with CK.

[Tumbleweed]

I think this is true for the majority of people who undergo CK. However, so as not to completely discourage potential radiotherapy patients, shrinkage can occur. Dr. Chang told me once that roughly 25% of his patients see "gratifying shrinkage." My AN first swelled after CK and then shrank dramatically. But as the others have said, this is not to be expected. I was lucky to beat the odds.

Best wishes to all,
TW

[ppearl214]

Am personally reporting that my AN did shrink post-CK.  At time of treatment (almost 5 years ago), it was "kissing" my brainstem (at 10mm).  Last head MRI done this past November, 2010 (did that tv news "health update" story with my CK team in Boston.... still awaiting "airing" date to let you all know).... we reviewed the updated films for the taping..... very visible shrinkage (no longer "kissing" the brainstem) and measuring approx 8mm (give or take).

So, based on what TW wrote, "gratifying shrinkage" in my case.... and as we all know... "individual results may vary..."  Please keep in mind that the goal of all radiation treatments of AN's is to stop enhanced growth, not to shrink.  It just occassionally occurs.

Phyl

I think this is true for the majority of people who undergo CK. However, so as not to completely discourage potential radiotherapy patients, shrinkage can occur. Dr. Chang told me once that roughly 25% of his patients see "gratifying shrinkage." My AN first swelled after CK and then shrank dramatically. But as the others have said, this is not to be expected. I was lucky to beat the odds.

Best wishes to all,
TW

[sunfish]

Found out yesterday that I'm in the "gratifying shrinkage" minority!

Doesn't help me feel any better physically, though.  Balance nerve is still traumatized, and giving me daily problems!

[Tumbleweed]

Hang in there, Sunfish. I expect you'll be feeling better in a couple more months. And congrats on your shrinking tumor; that's fantastic!

Best wishes,
TW

[Tisha]

That's great news, Sunfish!  I just found out mine has shrunk about 2mm since last summer, too.  However, the doc didn't give me the details so I don't know which way it shrunk.  I'll take it.

I haven't had an attack now since late January.  Do you drink coffee or caffeinated drinks?  I know that that is a trigger for vertigo, so i decided to see if it might be for the Nystagnus.  It's hard to tell because the attacks came at irregular times anyway.  However the week I had it so bad, it seemed to happen 3 out of 4 times early in the morning after I had my coffee.

That's tough giving up that morning coffee, let me tell you.  It really helped me get going.  But I'm doing much better now, and don't feel so tired.  I miss it more on the weekends for some reason.  Tisha