Author Topic: uncontrollable twitch  (Read 3392 times)

Gloria Nailor

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uncontrollable twitch
« on: December 13, 2013, 02:24:46 pm »
I had Gamma Knife radiation in July 2013.  I have been experiencing an uncontrollable twitch around my mouth on the side I had my tumor on.  Has anyone else experienced this ?  I am afraid it is the first sign of damage to the facial nerve, it was severely effected after my surgery and I gained back partial movement of my lip and cheek. I would hate to lose this : (
Maybe I need to be positive and see it as more of the nerve regenerating.  Thanks for your input.
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

Jim Scott

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Re: uncontrollable twitch
« Reply #1 on: December 13, 2013, 02:52:42 pm »
Hi, Gloria ~

I haven't experienced the kind of post-surgical twitching you describe but from reading numerous posts over the years relating to post-op nerve issues I suspect that what you're experiencing may be an indication of nerve regeneration.  However, that is only an opinion.  I'm not a doctor and can only speculate based on what I've read from those who were in a situation similar to yours ('twitching').

That stated, I would 'think positive'.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Gloria Nailor

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Re: uncontrollable twitch
« Reply #2 on: December 13, 2013, 08:58:22 pm »
Thanks Jim, more regeneration would be awesome!
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

Alison

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Re: uncontrollable twitch
« Reply #3 on: December 14, 2013, 02:44:22 am »
Hi Glorianailor,

I am nearly a year post SRS (Dec 12) and for about a week I've had an intermittent facial twitch, which is a visible pulse from my cheek to corner of lip on the AN side. It comes and goes with hours inbetween. My imbalance has got very bad this past two weeks also. I'm having an MRI in Jan.

Thanks Jim, it's hopeful to think it may be nerve regeneration! Lets hope it is Glorianailor.

Alison x
CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

mesafinn

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Re: uncontrollable twitch
« Reply #4 on: December 14, 2013, 05:54:50 am »
Hi Gloria:  I had GK in April 2013, and about six months later (the point you seem to be at), I started getting more twitches and reactions.   My doc says it's related to possible inflammation of the tumor (caused by the GK) and because the tumor is expanding (trying not to die, fighting a losing battle!) it can be rubbing up against the trigeminal (facial) nerve, causing these types of responses (twitches, hemifacial spasms, etc.).   He said it can be a bumpy six months or so but that in all likelihood, it will dissipate and eventually stop.   I hope that's encouraging news---for both of us!    Cheers,   P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Gloria Nailor

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Re: uncontrollable twitch
« Reply #5 on: December 14, 2013, 10:20:58 am »
Thanks Alison and P for your responses, I knew 6 months is when side effects can pop up, so it's frustrating not knowing if this is further facial damage or regeneration.....patience is hard to have at times....hoping you continue to improve as time goes by, thanks.
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK