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Author Topic: Facial Nerve Damage from GK/CK/Novalis?????  (Read 5225 times)

Patti UT

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Facial Nerve Damage from GK/CK/Novalis?????
« on: July 16, 2009, 08:28:26 am »
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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2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Melissa778

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #1 on: July 16, 2009, 12:16:03 pm »
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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1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

ppearl214

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #2 on: July 16, 2009, 03:07:01 pm »
Quote from: Patti UT on July 16, 2009, 08:28:26 am
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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Larry

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #3 on: July 16, 2009, 05:13:55 pm »
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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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

sher

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #4 on: July 28, 2009, 01:43:31 am »
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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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

mk

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #5 on: July 28, 2009, 07:22:01 am »
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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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Patti UT

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #6 on: July 28, 2009, 09:49:00 am »
thanks for all the input, I realy appreciate it

patti ut
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2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Susie Q

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Re: Facial Nerve Damage from GK/CK/Novalis?????
« Reply #7 on: December 23, 2009, 04:14:05 pm »
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.
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