ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: LADavid on April 09, 2008, 06:01:54 pm
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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
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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
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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
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K -
I think you are talking about Jackie Diehls. I recall reading some posts about her recently.
Jan
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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�)
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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.
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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
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And is there anyone who had synkinesis and had it get better or go away with exercise?
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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!! :D
OK, sermon over...sorry if I went off...
Happy Friday!
K
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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!
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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 ...
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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
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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! :D)
Lori
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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
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can nuns fix your face?????????????
K
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K
Being a Presbyterian boy, I don't know. It seems all my Catholic buddies ever talked about was the nuns smacking them on the hand with a ruler. Weird memories.
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Yes, but if someone if a black cape whacks you enough times on the hand with a ruler, you forget all about the facial stuff...
Married to an Italian, so second hand only...
Deb
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can nuns fix your face?????????????
K
No, but they can pray for you. But David's got all of us to do that for him 8)
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Thanks, Jan. That means a lot.
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A lifetime Catholic school survivor here, telling you that nuns, cannot, in fact, fix your face. They can injure knuckles, roller skate down school hallways in their habits and instill a sense of guilt very well though. I think I'm about to be struck by lightning.
Lori
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Lori
My Cathlic buddies did much worse and they survived. You're safe.
David
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Phew... that's a relief.... :-\
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:D
I am trying to envision an entire school faculty of nuns in full habits- roller skating down the hallway.
:D
And I cannot stop laughing
THAT Lori- is hilarious!
Daisy Head Mazy
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Yes, it was quite a sight! I can still picture it like it was yesterday! I think they sent all the slightly insane nuns to my school. Or maybe they weren't that way when they got there - maybe the kids drove them to it...
We had another one in high school who used to walk up the the front of the line for the snack table with a tote bag and "steal" all the cookies she could fit into the bag. Good thing those were loose fitting habits or she would have been letting out the waist line weekly.
Ah.. memories... :o
Lori
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We had another one in high school who used to walk up the the front of the line for the snack table with a tote bag and "steal" all the cookies she could fit into the bag.
Well you know in the "old days" nuns had to take a vow of poverty so she probably didn't have any money of her own to buy cookies ;D
Jan
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Hi LADavid,
I only started PT a few months ago as my wedding was coming up!
I must admit, I wish I had have started PT earlier. It is very important for synkinesis. I have found a very good PT in Melbourne (I think I found her through this site initially thank god) and she has been awesome.
She gets her fingers inside my mouth and massages the tight or knotted muscles just like if you had a tight back or hamstring - same philosophy.
She also positions my next in different places to stretch the neck muscle which causes so many of the synkinesis issues. If you can isolate this muscle, you're well on your way. A good one was doing the face exercises whilst pushing you chin back and moving your head/neck down.
Every time I see her I notice 1 or 2 immediate improvements.
After nearly 2 years post op, I am now smiliing in photos and just smiling more generally. I am going to continue to see her as I reckon she can get me back to 100% or thereabouts (i reckon i'm nearly at 90% and was at 75% 3 months ago).
Forehead is next which is the stubborn one but not that phased - saves wrinkles (am turning 30 this year! hehe).
Look fwd to seeing you on the big screen soon!
Cheers
Simon
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Hi Simon
Thank you for the input and the description of your physical therapy. I am glad to know that it is beneficial and that you are improving. That's very encouraging. I have eye surgery coming up in a couple of weeks and once I get that out of the way, I'll take on the Facial PT.
After four months of paralysis it was very frustrating to have the first movement be the wrong one. I'm glad to know there is hope.
Now if I could only figure away for SAG insurance to fund a trip for me to Melbourne... ;)
Unfortunately, you won't be seeing me on the big screen anytime soon. Possibly the little screen on re-runs of American shows.
Thanks again.
David
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David,
I also have synkinesis. I start PT in July. They will most likely botox the cheek which is pulled up causing a goofy snarl and if I try to relax my lip pulls up. When I smile the neck muscle sticks out causing my smile to be more like a frown. When they botox those areas then it will allow the proper muscles to work. They say that the regeneration of the nerve is there, muscles are working but are impeded by the tug of war by the wrong muscles kicking in due to synkinesis. Botox and PT do wonders I hear! I can't wait to start. Good Luck.
Angie-crookedsmile
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Hi Angie
My face is going through crazy things too. I start physical therapy this Thursday. I'll keep you posted on my results. Hoping for the best for us.
David
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David,
Who is the neuromuscular facial retraining physiotherapist that you found there in California?
Daisy Head Mazy
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Daisy Head Mazy
Actually she was found for me. Theresa England. I had a referral to her through Dr Slatery at the House Clinic. Her office is in Orange County and she makes visits to the House Clinic once a month. Since I can't drive yet and the House Clinic is only three miles from me, it sounded like a pretty good option. I start this Thursday and I have a bunch of questions. Like -- what happened -- how long will it be -- is it treatable -- will I now be type-cast as a guy with a stroke?
While I'm there is there anything you would like me to ask?
David
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David -
I just wanted to say good luck with your appointment tomorrow with Theresa England.
I'm hopeful she'll have some positive things to tell you.
Let us know how things go and hang in there :)
Jan
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I met Teresa England when went to the 2003 Anaheim Symposium. She is quite good with vestibular therapy and I did go to her session. I also just looked at my AN newsletters and found the one with her good main article. It is June 2004 which is issue 90. One could probably obtain one if contact the ANA.
I never tried to look by way of Google but she is Director of England Physical Therapy so it is probably possible to find her on the internet.
Cheryl R
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The home page has the newsletter list and that June 2004 is available. In looking over Teresas article there was no mention of synkinesis but just vestibular balance issues.
Cheryl R
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Here is the info on the web listed here
http://www.bellspalsy.ws/centers.htm
Her website
http://www.englandpt.com/facial-retraining.htm
Cheers,
Daisy Head Mazy
(Google queen ;) ::) :D LOL)
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Thanks Jan.
I'll keep you posted on the outcome. More than anything, I just want some answers and timeframes so I can plan my life a little. It's been a bit out of control lately with the onset of little surprise detours.
And on Saturday, I'm running the Revlon Run for the Cure 5K with my daughter. Busy week.
David
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David -
almost forgot about the 5K run. Good luck to you and your daughter.
Jan
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David,
Good luck with the run. What a nice way to spend time with your daughter! That's sweet! :)
Lori
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David,
I hope you can resolve your facial synkinesis issues. I can understand the concern with your profession. There have been character actors who have made a career out of their looks. Like one of my favorites, Jack Elam. :) I would imagine that casting directors are looking for many types, not just perfect looks. Off beat characters are a lot more interesting.
Regards,
Rob
(http://i93.photobucket.com/albums/l46/HeadCase2/avatar-JackE.jpg)
I remember Jack Elam playing a drunk, sitting at a Diner counter in a Twilight Zone episode. When he sees that the guy behind the counter is an alien with a third eye in his forehead, he drunkenly blurts out, "Take me to your leader, haw."
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Now there's a face only a mother could love!
I'd say if he can get an acting job, there's hope for all of us!
Lori
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Hey I can love anyone who has honest integrity, sincerity and good character no matter what their outward appearances looks like. My goodness I have met enough plastic perfect looking people in my day who lack those important qualities… to not want to love them. It is truly the people that are beautiful on the INSIDE that makes them most lovable.
http://en.wikipedia.org/wiki/Jack_Elam
Jack Elam sounded like a great guy. Seems to me he was loved by his Pacific Northwest friends here in Oregon, aside from his mother, regardless of what happened to his face. It was his buddies that encouraged him to leave accounting and go into “the arts� specifically acting. I wonder if his weight gain later in life had anything to do with depression- and the way other people pre-judged him by his face… and perhaps his difficulties in finding resources for help.
I am not his mother- regardless I think I could have loved a character like that who “kept moving forward� with his life. I think we should not laugh at this face- he was a real person and has real family still here in Oregon.
As we keep moving forward hopefully people here in the Pacific Northwest (specifically Oregon) - can push forward at getting more resources here for people with facial issues. My guess is in Jack Elam’s day- he did not have posties pointing him in the direction of neuromuscular facial retraining therapist, neuro ocular surgeons etc… or someone like Dr. Slattery (sounds like a great Dr. :) ) from HEI advocating, on his behalf, to have a therapist actually contact him. Last week at our Portland Oregon support group meeting we had a big turn out of 28 people. In the room was way too high of a percentage of AN people with varying degrees of facial issues: Bell’s Palsy, synkinesis, dry eye, etc.
I asked of the group,
“Is there anyone here who has seen a neuromuscular facial retraining therapist or had their physician refer them to one?
Not one person had. Not one.
Remember on our threads we have the whole world watching us- some still lurking cautiously in a state of being confused, overwhelmed and trying to seek help. We want to gain the support from the www in our AN journeys but we also want to create an environment of support to the outside world… so a person who has Bells Palsy or synkinesis or nystagmus (or all of these combined) feels comfortable enough to come out and ask us for help.
Can we carefully reflect on where this post is going?
Respectfully,
Daisy Head Mazy
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Now there's a face only a mother could love!
I'd say if he can get an acting job, there's hope for all of us!
Looks like another possible money-making opportunity for both of us, Lori ;)
Jan
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Ah, yes.. my mother always said I was going to be an actress or a politician someday. She used to call me Katherine - as in Hepburn because I tended to be a little dramatic as a child. Won't she be proud when I finally tell her she was right - after all these years!
Lori
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OK, so I got the synkinesis deal. I met with both the surgeon and the PT. Both said it would be a year or two before I got my face back. I have my second PT appointment tomorrow. Hey Simon mate, it's like you said -- cheek massage -- amazing difference. But it looks like my acting career is on hold for a while. In the meantime, I run, write and look to Capt Deb for Social Security advice.
David
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Hi David,
I guess that news from the PT and surgeon is a bit of a set back; I'm sorry to hear it. I hope the running will help keep your spirits up; maybe you will be inspired and come up with a great piece of writing in place of the acting - a stand in, as they say.
I have to say this cheek massage thing sounds vaguely kinky, I'm not sure I would be telling everyone that you are into that now. :D
Take care,
Steve
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Steve~
I think it would be kinky if it were someone else doing to you...maybe David can check into that! ;D
K
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Steve & K -
you guys are SO bad :o
David -
good idea to talk to the Capt about SS. She definitely won't steer you wrong :)
Good luck,
Jan
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Steve~
I think it would be kinky if it were someone else doing to you...maybe David can check into that! ;D
K
K and Steve, I think David meant his face.... :D
My goodness, we're going to have to start watching these Moderators...
Lori
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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
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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) ;D
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
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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--
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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
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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. ;D 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
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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.
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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
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RE
"On my one year anniversary, she is recommending botox" .
Ditto…
Does that make us Botox Buddies? ;) ::)
Daisy Head Mayzie