ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Patti UT on July 16, 2009, 08:28:26 am
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HI All,
Just diagnosed with round two. :-\ Had Mid fossa recession 5 years ago and the little buggar is back, I rally hate that guy, that's why I kicked him out the first time. Anyway, the thought of that surgery a second time is daunting, so I am looking very closely at going the zapping route. The new growth is pressing on the facial nerve so I am very concerned about damage to the nerve and facial paralysis. With the surgery, the nerve was traumatized, but not severed, so my paralysis was temporaty, cleared up completely in about 3-4 months. Having radiation put on it scares me.
What are others experiences with facial paralysis from the radiation??? Also, with md fossa, my hearing nerve was preserved and although, not servicable, and now only slightly measurable, I do have a hint of hearing left that I think does assist my other ear a tad. Will the radiation to the area kill off the hearing nerve? lastly, experience with balance, as that has been my biggest issue since mid fossa along with screaming tinnitus which I know wont go away, but really need some improvement on the balance.
Any feedback would be great,
Thanks
Patti UT
Phyl, If you read this, a section for recurrance would be nice. it would be interesting to see how many there really are.
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I had GK in October after my translab last May. They were unable to get all of the little booger via translab because some of the tumor had adhered and twisted around my facial nerve. Hence the GK.
I occasionally have some twitches and "numb" moments....but overall my facial function is 100%. GK did not affect that for me.
As far as the hearing preservation goes I am unsure of what your results would be as I had translab prior to GK and have no hearing in my AN ear. I did however end up with tinnitus after GK which I did not have at all prior to GK. Some days the tinnitus is bad, some days hardly noticeable. So I would say overall good results. I go back in Sept to take a look at how/if the GK has helped :)
Best of luck to you, so sorry you have to go through this again.
Melissa
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Phyl, If you read this, a section for recurrance would be nice. it would be interesting to see how many there really are.
caught the hint, hun! ;)
Hey YooTee! For me, no facial issues post-CK. I did have some "irritation" of the nerve in the first few months and ran into dry eye pretty bad for a month (I thought an eyelash was stuck in my eye... eye dr confirmed the dry eye.. said my eye looked like an onion... ouch...) but other long-lasting affects of radiation (via CK, in my case) and facial issues, I report none.
Hope that helps. Hang tough! :)
xoxo
Phyl
(sidenote.. I just used the spell check option and gotta share.. Patty.. it showed YooTee as "Bootie" LOL! :) I know you needed a laugh)
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hey Ms yodelayhoohoo or is it Ms Bootie now?
I'm only a few months out from my FSR treatment but no facial nerve damage - well at this point anyway. i actually asked the professor who did this and he said he has not had one facial nerve damage patient. he's been doing this for over 10 years.
hugs
Laz
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Patti,
Some facial pain for me, but only occasionally and it is getting less and less. I had an eye twitch sometimes before CK and have had it a couple of times in the last 9 months, but really nothing that has been llife altering.
Hang in,
Sher
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Patti,
The chances for facial nerve damage are extremely low with the doses that are currently used in any type of stereotactic radiosurgery. The chances of some damage to the trigeminal nerve that can cause numbness or pain are somewhat higher, but I don't think this would be an issue for a small regrowth as you have, since probably there is no trigeminal nerve involvement.
As for hearing, from what I have seen the better the hearing is going in, the better the chances to preserve it. Unfortunately when hearing is already compromised there is a big probability that it will be diminished even further.
Marianna
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thanks for all the input, I realy appreciate it
patti ut
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Patti,
I wouldn't say the radiation paralyzed my face. It's a little sluggish as far as eye blinking, smiling , and forhead wrinkling. There is numbness in a strip down the center of one side of my face. I'll still take that when I think of the risks associated with surgery. The balance issue has gotten much better as one side take over for the other. Doing yoga and balance ball exercises helps, too. My hearing is about like yours-barely there but I'm sure it helps a little.