4 months post CK and have facial tightness and synkinesis

[kjm]

My right side (an side) of my face is really tight and will sometimes get an involuntary eye closure and pulling up of my mouth.  Did not expect this to happen with the ck treatment.  Does this mean my facial nerve is damaged?

[Jim Scott]

Kathy ~

Not necessarily.  More likely, it was traumatized by the effects of the radiation. 

From the ANA website: Within up to 2 years following treatment, the tumor can swell due to inflammation from the radiation and increase sypmtoms.  Typically this is short term and improves within time.  Occasionally, patients develop facial numbness, facial weakness or deafness on the side of treatment. These deficits typically occur between 6-18 months after treatment and, other than hearing loss, are usually temporary.

http://www.anausa.org/index.php/overview/post-treatment

Jim

[kjm]

thanks Jim.  Checked in with my doctor and he said the same thing.   On a short term steriod treatment to help the synekinesis.  Got to remember that this will be a journey and not a quick fix.

[sunfish]

" . . . this will be a journey and not a quick fix."  You really got that part right.  I'm 21 months out from CK, and am still getting used to the "new normal."  Had lots of tiny twitches in AN-side eye muscle this week, which haven't been there before.  No big deal, and it seems to be diminishing.  Not a good day for my balance issues today, either.  One day at a time!  Glad to hear you talked with doc and got steroids.

[mattsmum]

i had had some facial twitching prior to radiation - but had a whole pile more since including hemifacial spasms. i was worried it made facial palsy more likely - but my neurosurgeon reassured me not. it has got much better over time (1 year).
hope yours settle soon,
vikki
ps i was warned they could go on for a year or 2

[JLR]

Hi..Me too..all of the above and I am nearly 13 months post CK. I have noticed the fluttering about my mouth is happening more and more..I keep wiping my face like there is something there..only there is not. It's just the nerves twitching..annoying but I'm getting pretty used to this.  There are so many effects to the radiation but the most important one is the shrinking of the AN or that it remains the same and doesn't cause any havoc! Happy Healthy New Year to all, Joan

[kjm]

Still have facial tightness after finishing with a short term steroid regime.  Really no difference in my tightness of my face so won't request additional steroid therapy.  I do feel comforted after posting that others have experienced the same symptoms and are working through it.   I gain my strength and perspective  from this forum.   Thanks all for being there when I need you.