Need Synkinesis Advice/Input

[Kaybo]

Steve~
I think it would be kinky if it were someone else doing to you...maybe David can check into that!   

K

[leapyrtwins]

Steve & K -

you guys are SO bad 

David -

good idea to talk to the Capt about SS.  She definitely won't steer you wrong 

Good luck,

Jan

[lori67]

Steve~
I think it would be kinky if it were someone else doing to you...maybe David can check into that!   

K

K and Steve, I think David meant his face....

My goodness, we're going to have to start watching these Moderators...

Lori

[LADavid]

Jeez.  All this wicked stuff posted as I was sleeping  .  Simon (Chambo) knows what I'm talking about.  It's a "face" cheek massage.  I think that's to get rid of the synkinesis.  But who knows it might work to stimulate the muscles for folks with palsy.  I'll keep you posted if I pick up some advice.

David

[leapyrtwins]

David -

if it's any comfort, I knew exactly what you meant.  And I'm very sorry that Steve and K took it in another direction (yes, I'm sucking up to the moderators here) 

Seriously, I say do anything and everything you can to get rid of the synkinesis.  And thanks for posting this advice; I'm positive it will be very helpful to others with facial issues.  I know the PT and surgeon told you 1-2 years but that's probably the "norm".

Most of us are told 6 weeks recovery after AN surgery and some recover sooner, some recover later.  Let's keep our fingers crossed that you'll be one of those who recover sooner from this 

Jan 

[Angela]

Can't remember who originally asked...
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--

[ToddH]

The name of the therapist in SD is Wanda Crook, she is at the Movement Learning Center, 760-787-0931.

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

[4cm in Pacific Northwest]

Todd,

Actually the PT that LA David went to was Teresa England- as she does a clinic at HEI –where they bring her in to their facility.

I am working with Wanda Crook from SD. I am her long-distance-learning homeschooled patient.  I like her- she is very down to earth. I am working at having other institutions bring her in to us- here in the Pacific Northwest.

Here is the link of available therapists. The trained specific “neuromuscular facial retaining therapists� are highlighted.
http://www.bellspalsy.ws/centers.htm
Seems that out west California has 2 and here in Oregon we have none.  I am in the process of working with a team that is hoping to change that. Plans are in the works to have Wanda Crook present to our Portland ANA support group some time this fall  … I will be posting once this is more concrete.

Daisy Head Mayzie

[Chambo]

Jeez.  All this wicked stuff posted as I was sleeping  .  Simon (Chambo) knows what I'm talking about.  It's a "face" cheek massage.  I think that's to get rid of the synkinesis.  But who knows it might work to stimulate the muscles for folks with palsy.  I'll keep you posted if I pick up some advice.

David

Good work mate!

Yeah the inside of mouth massage is not dissimilar to massaging a tight hamstring. The nerve is working but the muscle is so tight that it won't move freely. I think this type of massage is meant for those who are 12 mths post op or thereabouts but hey, I'm no Doc.

[LADavid]

Hey Simon
How are you doing with your synkinesis therapy?  I think I'm seeing a bit of improvement -- it's tough to tell.  On my one year anniversary, she is recommending botox.  Still have a way to go for that.

Thanks again for the advice.

David

[4cm in Pacific Northwest]

RE
"On my one year anniversary, she is recommending botox" .

Ditto…

Does that make us Botox Buddies?  

Daisy Head Mayzie