Is this synkinesis?

[Tumbleweed]

Hi, everyone:

Around 45 minutes ago, my left upper eyelid (on my AN side) began to intermittently spasm, close about 1/4 of the way, and then release and open all the way. This is happening about once every minute or two. Each time it occurs the spasm lasts about 3 seconds. Nothing seems to precipitate it; I'm not smiling, eating, or puckering my lips when it occurs; it just happens out of the blue when my face is "in neutral."

I'm worried that my facial nerve is having a reaction to tumor swelling, the radiation (CK) treatment I had 4 months ago, or something else.

Is this synkinesis or something else? Has anyone else had this happen to them after having CyberKnife treatment?

Thanks,
Tumbleweed

[leapyrtwins]

Tumbleweed -

LA David had surgery, but I know he has synkinesis.

I don't really know what synkinesis is, but I'm sure David would be glad to tell you all about it.

If he doesn't see this thread and respond to your question, you might want to PM him.

Jan

[Tumbleweed]

Thanks, Jan. My eyelid spasms were pronounced for about an hour and gradually went away after two hours. Maybe I'm just being a hypochrondriac and seeing every little wierd thing as being AN-related. Has anyone else had this symptom happen to them?

Thanks,
Tumbleweed

[jazzfunkanne]

this has happend to my eye in the past and like yourself i got worried, i informed by consulant who said it was nothing to worry about prob just a spasm. btw where has LA David went ive not seen him on here in a while?

[Cheryl R]

Hello Tumbleweed,         Spasming is not synkinesis.           You may have a bit of swelling which is causing the spasming and may even even continue off and on.             I don't know if steroids would be needed for it.                        I am having some occ left eye spasms lately.      I hate surgery on that side this spring with no facial paralysis but it is acting up anyway.       
If you had synkinesis,you would have an eye close when you did certain movements with your mouth.       The mouth may move when something else moves.       It can vary.   It is involuntary movement of one muscle when there is movement of another muscle.
   There always seems to be something happening which keeps us on our toes and wondering why!
                                                 Cheryl R
 

[Cheryl R]

Also excuse the spelling of had in had surgery.        I didn't proofread well enough!           But yes I did hate the surgery too!
                                               Cheryl R

[mk]

Tumbleweed,

from my understanding after recent discussions with other forum members, "twitches" of this sort are usually due to the facial nerve taking some hit from the radiation, or from some swelling, affecting the nerve.
Having said this, I had something like what you mentioned many many years ago, in my 20ties, when I am pretty sure AN wasn't a factor. I was going through a stressful time, and my eyelid used to twitch like that. I am pretty sure it was due to the stress.

In any case, contacting Dr. Chang and asking about it may not be a bad idea. Let us know how it goes.

Marianna

[mrgarlic]

Greetings Tumbleweed, synkinesis is a funny thing. And I mean exactly that. I can move my chin just right and make my eye twitter. A great party trick. I have been told that it is my nerves regenerating and sometimes they don't have a GPS. It is like putting on your blinkers in your car and have your horn honk. Eventually they may find their way home. There is facial therapy available, including exersizes you do yourself. I too am a public speaker. I make fun of mine and get along fine. I guess if I were a pretty lady, I would feel a whole lot different.   I am four years out from my AN surgery. If your treatment was recent, my guess would be swelling. If there are 100 posters on here, you will get 75 different opinions. We all have one thing in common. We are all in this boat together. I am very happy that when I feel down, someone will do my rowing for me,,,,,,,,,,,,,,,,,,,,,,,,,,Larry

[Tumbleweed]

Thanks to everyone for your replies, and for clarifying what synkinesis is. I got an email reply from Dr. Chang about this. He said it was blepherospasm, or spasm of the muscles around the eye, and that it can happen to most "normal" people, too. He didn't think it was related to my AN or the CK treatment.

Thankfully, this has calmed down and not recurred in the past 48 hours. I've been under a bit of stress lately (probably more than I realize), so that's probably all it was that was causing it. Wierd, though.

Thanks to all,
Tumbleweed

[LADavid]

Hey Tumbleweed
Sorry I've been MIA -- in the middle of a move -- well actually just unpacking now.

What you have does not sound like synkinesis..  I do have it.  The nerves, as they were recovering, rewired wrong.  So the muscles in my palsy side of the face get the wrong messages.  When I eat, my eye and my neck muscles thing they should be doing something too to help out.  My face contorts in the process.  When I squint out in the sun, my cheek and mouth draw up in a spasm that I have to make relax through a concentrated effort.  If you have those types of reactions, that would be synkinesis.  But from what you describe, it doesn't sound like it.

Hope this helps.

David

[Tumbleweed]

Thanks a lot for your insight, David! You've put my mind at ease.

Best wishes,
Tumbleweed

[CROOKEDSMILE]

Just got back from Vanderbilt Medical Center for my every 3 month visit with my facial retrainer and she was pleased with my progress. I have had quite a bit of twitching in my cheek and up by my nose. I asked her how could I tell the difference between synkinesis and just normal twitching due to nerve recovery and she said synkinesis is abnormal movement in the face when you i.e. smile or make any other purposeful movement. For example if I smile my eyebrow wants to go up. Or when I smile my neck muscles want to pop out. I have had twitching now that has  nothing to do with synkinesis. I will be lying still not making any facial movements and my cheek will squeeze then release or my chin will squeeze. She said this is good twitching signifying typical nerve recovery. She called it fasciculations. I did get botox in my  neck muscles again yesterday which should help with the synkinesis in the neck and makes smiling much easier without the tug of war from those muscles. I am diligent about my exercises and am starting to see results from that. Some days I can go without my eyelid weight but it is hard and I find myself using my cheek to help close the eye so my therapist suggested that I always wear the weight so that i don't develp bad habits with eye closure with cheek movement as this can quickly become second nature and the brain will want to do this even once the eyelid "blink" comes back which I don't want. So for now I will continue to wear the eyelid weight until the eye gets strong enough that I don't have to use the cheek and forceful closure. Today is my birthday...big "38". Some days I feel like I am 88. I am extremely emotional teary eyed today for some reason. Can't explain it. I should be happy about my progress but instead am sad and depressed. Got a call today from an old friend who I would love to see. She remembered my birthday.......She hasn't seen me since surgery and I keep canceling out on her because I am too embarrased to see her.Yeah...I know.....silly. I just miss the old me. My 20th year high school reunion is coming up. I was captain of cheerleaders......always the prom queen........don't think I'll go to that either. Just feel too ashamed. Just not the same. Geez. Just need to go to bed and hopefully wake up to a better tomorrow.
Angie

[Tumbleweed]

Thanks for your detailed information, Angie.

It's totally normal and to be expected that you would sometimes lament your condition. I doubt anyone on this forum has come through this disease unscathed. It sounds like you're a fighter and you're trying hard to fully recover. That's the best you can do (along with allowing yourself a good cry now and then).

I hope you feel better soon.

Best wishes,
Tumbleweed

[jazzfunkanne]

Hi Angie thats good news about your face, i am like you i get teary eyed some days for the least little thing, about meeting your pal i think you should do it, i met up with a friend last week who i had not seen from before the op i was dreading it , but she didnt even mention my face and we had a great time.

[MKLady]

Oh Angie, I'm so sorry you were having a down day yesterday.  I totally get it though.  I miss the old me, too.  I hope today you are feeling better. 

I am also having a reunion next year (30th).  I'm on the planning committe and one of the members showed up and she had not heard about the surgery.  She took one look at me and immediately addressed the elephant in the room by saying "Well what in the world has happened to you."  She wasn't being mean, she just wanted to know.  It actually helped because it eased the tension I felt.  It gave me the opportunity to explain without having to bring it up myself. I think others had wanted to hear about it but were too uncomfortable to ask.  After that it was never mentioned and we had a great time catching up.  Your good friends will love you no matter what. 

This may help too.  At my 10 year reunion people were still really immature and comparing looks, careers and whose kids were better than whose, etc.  Still drinking too much and partying too.  By the 20th we were just all really glad to see each other.  Everyone was over all the superficial stuff.  Go in with your head high.  You are strong and you know it by what you have gone through.  THat's one thing this whole AN experience has shown us.  We are strong and God is with us. 

BTW, who is your facial retrainer at Vanderbilt?  I'm in north Georgia and that's not that far to drive.  I've been thinking of going to one at the first of the year.

Susan