Synkinesis Therapy Timeframe

[LADavid]

Hi All
Just had a meeting this morning with my General Surgeon.  He confirmed the development of synkinesis and referred me to a PT.  He couldn't give me any real solid numbers on how long it would take to get back to normal and what is the success rate of retraining.

For those of you who have had synkinesis and gone through PT, what was the appoximate length of time that it took you to see significant improvement while in therapy?  And did you see improvement?
(Simon, I sent you a PM).  And how long would you say it took for you to be back to what you could call normal?

Obviously, as an actor I've become very concerned about this.

Any input you can provide would be great.  Thanks.

David

[Angela]

I saw a wonderful physical therapist who had an AN and facial synkesis.
She moved from San Francisco to Oregon (Washington?).  I don't know if she has established her practice up there but please look up SARA SHAPIRO if you get an opportunity. 

Through Sara's partnership with RehabiliCare, I was able to get an electric stimulator for my facial muscles.  I don't know if it idid or did not work;  However, my view is "it's worth a try!"  At worst, it improved circulation in my face.
 
She was the first [and only] person I have seen with facial paralysis.  I don't cry often but she knew exactly what I was going through without me having to verbalize every detail.  That alone was priceless.

Dr Jackler says I have wasted alot of time and money.  That may be true but I am confident that I did everything I could do in the past 3 years: pray, electrical stimulation, chinese herbs, facial massage, acupunture, and more prayer.  I can look back without any regrets!

Good luck--

[4cm in Pacific Northwest]

Angela,

RE “Dr Jackler says I have wasted allot of time and money�

What I like, personally, about Dr Jackler is that even though he is a surgeon, a professor who teaches others, a department head, an associate dean, and has many accomplishments plus responsibilities- is that he is receptive and open to learning.

He and I have talked about physiotherapy and he backed me up in my seeking neuro muscular facial retraining therapy and he indicated that it is worth a try.

It was actually me telling him I did not want to deal with “snake oil salesmen� who were wanting to take advantage of a patient who so desperately wants to be well. (I am sure he has seen cases when his patients have been taken advantage of as I have also seen with fellow patients I know of.) I wanted to work with a field therapist that actually has documented and proven results. He seemed to be very understanding of this point I brought up.

With all his responsibilities – especially at this stage of the academic university year (spring) I am continually impressed that he answers my e-mails and phone calls. He had his assistant surgeon write me a referral for facial retraining therapy.

I think he learns from the experience he has from each patient and applies that to his future patients. (This is a good example of a “life long learner�) Perhaps you paved the way for me being able to get a referral to a neuromuscular facial retraining therapist (once I found one in my locale). For this I thank you.

Keep moving forward- and others too will pay it forward.

It looks like you had your first facial movement 3 / 12 months after the nerve graft. That is wonderful! How much movement do you have now?

You and I both were 4 cm and chose Dr. Jackler…. I bet we have more in common.

Daisy Head Mazy

[Angela]

Hi DHM:
Very interesting.  I never got the impression that Jackler supported any of my other attempts for facial recovery.  Based on your recent experience with Jackler, I would agree that he role-modeled lifelong learning!  My conversations with another former patient (a physical therapist) indicated that he disagreed with her too.  But that was several years ago and obviously he has come a long way!

He responds very quickly to email.  I appreciate that I can keep communicate with him without having to actually book appointments.  I can think of better things to do than drive 90 min to Palo Alto then sit in the waiting room.

Yesterday was my 6 month follow-up.  He was very pleased with my early results and increasing strength.