ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: Gloria Nailor on December 13, 2013, 02:24:46 pm

Title: uncontrollable twitch
Post by: Gloria Nailor 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.
Title: Re: uncontrollable twitch
Post by: Jim Scott 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
Title: Re: uncontrollable twitch
Post by: Gloria Nailor on December 13, 2013, 08:58:22 pm
Thanks Jim, more regeneration would be awesome!
Title: Re: uncontrollable twitch
Post by: Alison 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
Title: Re: uncontrollable twitch
Post by: mesafinn 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.
Title: Re: uncontrollable twitch
Post by: Gloria Nailor 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.