Need Synkinesis Advice/Input

[LADavid]

When does this stuff end?  I finally end up getting some movement in my cheek and all of a sudden there's too much.  Now when I move my eye, my mouth draws up into a nasty grin.  And in the morning when I wake up, my AN side of my face is all balled up in a knot.  And my lips don't work well together and when I drink, I drool -- (lovely image).

I read up on it in past AN Forum posts (wish I had read it earlier -- especially about the caffine and alcohol) and I looked it up on-line and chatted with Lori about it.  But it still left me with questions.

Of those of you who have had it happen to you, did any of you find that it went away on it's own and was there anything you did to aid the process.  Or if it didn't go away on its own, what did you do to make it go away -- Botox?  PT?  And if you did get rid of it, how is your face symetry?

As an actor, this has me a bit concerned.  Unless I play Marty Feldman type roles or the Joker in Batman, auditions may be limited.

David

[leapyrtwins]

David -

I really wish I had some advice to give you, but I haven't had this stuff happen to me. 

I'm thinking that PT would be a good option, but that's just my gut reaction - I have nothing concrete to base this on.

Have you contacted your doc and asked him about any of this?  He might have some suggestions or know of some resources that he could point you towards; you're probably not his only patient who has experienced something like this.

Jan 

[Kaybo]

David~
I don't know if you would call it fortunate or unfortunate, but since I never had ANY movement then I never had these problems.  I am so sorry this is happening.  My MIL & I were talking just tonight that if there would have been more therapy options (esp. after my 12/7), I think that I would have had a little better results years ago.  I was telling her about that Jackie lady (Dahls? or did I make that up?) who a lot of people have referred to here & how it sounds like she really has a handle on all of this.  I'd be calling her - maybe she can at least answer some questions and get you going  in the right direction so those nerves will regrow & train the right way.
K

[leapyrtwins]

K -

I think you are talking about Jackie Diehls.  I recall reading some posts about her recently.

Jan

[4cm in Pacific Northwest]

David,

My 1st undergraduate degree is in fine arts- and I truly empathize with your situation… I am also a certified high school teacher and a public speaker. The asymmetrical and inappropriate facial movements are hard for me too- to deal with. You and I appear to be dealing with similar issues- including waking up with a tight snarl face. (Morning massage will help this)

I plan to fly from Oregon to Wisconsin as soon as I get my tax return completed-  to see Jackie Diels for therapy.

Here is an article to share with you about her work. My surgeon also knows her and her work. He too recommends I see her directly. She has good documented results that he has seen.

http://www.ophth.wisc.edu/about/fsSummer2004.html#botox

There are only a handful neuro-muscular facial retraining therapists qualified to do this in the USA. Jackie mentioned to me that there is one in San Diego when we last corresponded...

Send me a private message if you want more info.

Hugs David…

In the meantime try doing these exercises
http://www.bellspalsy.org.uk/exercises1.pdf

&
http://www.bellspalsy.ws/exercise.htm

… Heat on the face too- will help relax the facial muscles.

Hang in there- I believe there is still hope in our situation.

Daisy Head Mazy (formerly AKA “4�)

[vcschaub]

If you read my past postings, you will see that I have dealt with synkinesis. I went to see Jackie Diels for treatment 14 months after my surgery. She does not recommend immediate treatment post surgery. She taught me exercises to do and I was also treated with Botox. I have followed up at home with my exercises and Botox treatments by a local maxilo facial surgeon. I am now over 2 years post op and I continue my exercises and Botox injections as needed.

[LADavid]

Thank you all for your input.  This sounds like one of those long-haul kind of things.  Daisy, I read the link on Jackie Diels.  Thank you for passing it along.  It answered a lot of questions.  It did create another one -- do any of you know if insurance covers PT facial muscle trainers?  And does anyone know the name of the PT in San Diego?  Unfortunately, I don't have the time for the long-haul.  If I turn down too many more auditions and opportunities, I'll be well forgotten.  What type of excercizes do you all do?  Does it help?

David

[LADavid]

And is there anyone who had synkinesis and had it get better or go away with exercise?

[Kaybo]

David~
I am anxiously awaiting replies to this for you...I don't know anything about this and am curious.
I know you probably don't want to hear this right now, but remember that there is a reason for EVERYTHING -- you may not see it right now, but it is there.  "If God closes one door, He always opens a window somewhere!"  If I didn't believe that, I wouldn't be where I am today with my stroke, face, 4 miscarriages, etc.  Remember what you truly believe deep down and what is the most important things in your life!!   
OK, sermon over...sorry if I went off...
Happy Friday!
K

[Cheryl R]

Insurance should cover the facial therapy but you may need pre approval.         I did just a half day session with Jackie in 2002 and I had to get pre approval.      The help for synkinesis is to help counteract the muscles that are acting up.   One has to focus on trying to relax the spasming areas.      I am not good at expalining it.              Do try heat to the face too as she recommends that.                                                   Cheryl R

   6 days till surgery and it is going too fast!

[Debbi]

David,
I can't offer any real wisdom here other that to say that you're in my prayers.  I have several friends who are actors out here on the "right" coast, and know how important it is to stay  on the audition circuit.  I iwll ben sending you lots of positive karma and "good ju-ju."

CherylR - we're all going to be sending lots of posiitive energy your way next Thursday!

Debbi - having occasional moments of anxiety as the countdown nears ...

[leapyrtwins]

Cheryl -

hang in there.  Waiting for surgery is sometimes harder than the recovery afterwards.  I'm keeping my fingers crossed for me.

Debbi -

ditto for you.  Your plans for a pre-surgery spa day, that I read under another topic, sound like just the ticket to sooth your jitters.

David -

K is right.  There is a reason for everything, we usually just don't know what the reason is    Maybe you are meant to be a great writer, maybe you were meant to meet us, maybe you will become a famous actor and spend the rest of your days being our AN spokesperson.  I'm betting that there are better days ahead for you, it's just hard to focus on them sometimes.  Don't give up the ship!

Jan

[lori67]

David,

My synkinesis is getting better.  You have to keep at the exercises.  My insurance covers PT, I just needed a referral, so I would imagine most insurance plans would have some coverage for it.

Cheryl is right, you have to really retrain those muscles and your brain to do what you want.  You have to watch yourself in the mirror and really concentrate on the cheek muscle relaxing as you try to blink, or the lip or whatever part is moving when it shouldn't.  Then eventually, the idea is that the blink muscle will become strong enough that it will sortof overpower the need for the cheek to feel like it has to join in.  You really should look into the PT because even if you only go a few times, it will help.  It's not easy to isolate those little facial muscles to get just the right ones moving, but if you have someone who knows how to explain it to you and watch you closely while you are doing the exercises, you can make sure you are doing them right at home.

The synkinesis in my cheek is minimal at this point, and probably, I'm the only one who can notice it.  It's still pretty strong in my lip, but I have seen slight improvement.  Just stick with it and think positive!  I'm at 14 1/2 months post op, and I'm still seeing improvements. This is more patience than I 've even needed before, but I finally had to learn that some things I can't contol and I just have to do what I can and hope that this too shall pass!

Hang in there!  And get thee to a PT!  (very Shakespearean of me...I wanted to try to sound smart!   )

Lori

[LADavid]

Thank you all for your support and advice.  I really means a lot to me.  And Kayand Jan, I do appreciate the new door opening and that's what I'm looking for through all this.  There are a lot of options including going to Best Friends.  I've never been in love with acting but it does pay the bills (odd for an actor to say that).  And Lori, I believe the other version of that is "Get thee to a nunnery."  I shall pass.  But thank you for your first hand input.  It helps to know that it can be corrected.  I will work on my own correcting the blink and grin and plan to get a PT referal from Dr Slatery when I see him in May.

In the meantime, Debbi and Cheryl, I hope the days go quickly and before you know it, you're having a very successful post-op recovery.

Thanks again everyone

David

[Kaybo]

can nuns fix your face?
K