synkinesis

[rntiggergirl]

Hi Everyone-
I am developing synkinesis in my AN affected side of my face, what is called jaw wink synkinesis.  I have had minor problems before, but now it is getting to the point that I cannot control my eye from closing at times and it feels as though the whole left side of my face is spasming.  It is becoming very distressing to me, I cannot chew without it affecting my eye.  I work with people and this is starting to make me very self concious around others especially when eating (something that is almost impossible to avoid at this time of year).
Can anyone tell me of any treatment that has helped them with this problem?  I have read about botox but have my reservations about using it, has anyone had success or failure with this treatment?  Are there any other treatments available?
I have only been back to work for 2 months and cannot take time off work and I really like my job and do not want to lose it!!
I have been out of work about as much as I have worked over the past 3 years due to problems and complications post my middle fossa surgery 12/03, including: severe balance issues w/ vestibular nerve resection in 7/04, CSF leak post original surgery and then again after the surgery 7/04, with most recent surgeries in 5/06 and 9/06 to fix the leak, I still have a small intermittant csf leak but have decided against any further surgery (my doctor agrees with this decision). now the synkinesis.  If I read again about how rare the problems I have are, I think I will just scream.

Well I think that's enough rambling.  Any help would be much appreciated...

Cheryl V.  (I think this face looks most like me!!!)

[matti]

From one Cheryl to another, I can relate to what you are experiencing. I developed the jaw/wink about 6 months post-op and also when I eat my eye is affected. I am sad to say that my doctors never recommened facial retraining (I'm 8 years post op). I never knew it exsisted until I found this forum, and I think it is too late for me ???  I have read many positive things about Jackie Diels who is a facial rehabilitaion specialist at the University of Wisconsin. She deals quite a bit with synkenisis and wrote an article in the 2006 issue of ANA notes. If you don't have it, I can make a copy and send it to you. Perhaps you can contact her and she can recommend someone in your area.

I know how frustrating it is and one time I purposely watched myself eat in the mirror and wasn't too thrilled. If you want the article let me know.

I think both these icon describe me perfectly  and  LOL

hugs,
Cheryl

[Pembo]

Facial retraining helps tremendously with synkinesis. Todd at UPMC, in Pittsburgh is who I see and he is excellent. I also spoke with Jackie on the phone.  If you don't know of a facial therapist in your area, call Todd at UPMC. He has contacts of therapists all over the country. I can give you his info, just pm me. Stay strong.

[danaej]

So that is what it is called. I have noticed lately that when I eat that my An side eye closes on its own. it is so ironic. Right after the surgery I couldn't get it to close at all and now it does it when I don't want it to. I will ask my Dr. about the facial retraining. I am glad I am not alone...Thank you, Dana

[amymeri]

I have synkinesis as well as hypertonus in my cheek.  I am being treated at Mass. Ear Eye Infirmary but Tessa Hadlock M.D. 

You can find a treatment center at bellspalsy.ws and a discussion of facial paralysis, synkinesis and treatments.

You can also visit Dr. Hadlocks site at:  http://www.meei.harvard.edu/facialnerve/face.php

There are some wonderful and effective treatments out there.  Be sure to find one that is reputable!  A major medical center is your best bet.  I will be driving every 6 hours each way every 2-3 months to see Dr. Hadlock.

Good Luck!!!

Amy

[Windsong]

I've never heard the synkinesis word before until being on this site, so i don't know anthing at all about it....

would this be responsible for weird things like having your jaw snap shut... in a way that happens any old time ? but rarely so  and you never mention it to your doctor becasuse by then, you have forgotten about  it?

Anyone else with something like this?

Thanks,
W.

[kerri lyn angel]

hi i'm kerri and im new to this this is my first post ive basically been just resding everything because im pretty computer stupidbut this beats the heck out of the phone (major sound issues since surgery) ( actually major issues with everything which brings me back to the synkinesis. yeah its a pretty lousy thing when you suddenly start twitching and your eye involuntarily shuts. as someone pointed out in their replythe irony of formerly not having been able to close your eye and then having it shut when you least expect it should. but i also ahve issues with my tearduct. it no longer functions andi had previously blamed the anesthesiologist for hairline fracturing five of my lower teeth which subsequently had to be removed but now im thinking it had something to do with this thing as i constantly find my jaw on that rotten side clenched very tightly.infact the whole side of my face is tensed all the time and my chin and side of mouth twitch noticeably. i cant even wear my partial because of it. it seems to  be getting progressively worse instead of better. i wonder if there are any type of exercizes one could do on their own to help.

[amymeri]

Kerri

Check out the bellspalsy.ws site.  There are may exercises and treatments listed.  There is always the risk of making things worse if you don't do the exercises correctly...which is why an experienced professional is the best bet.  But the site can give you lots of information.

Good Luck!
Amy

[kerri lyn angel]

thanks amymeri, im gonna check it out!
                                                     kerri