Help! Synkinesis has started. Seeking NMR therapist in the PNW

[4cm in Pacific Northwest]

Help! Synkinesis has started. Seeking NMR therapist with facial neuromuscular training within the PNW.

At 5 ½ months my spirits were on the up-and-up as I have regained 50 % of my facial movement back. I have gone from a 6 on the House Brackmann nerve Scale to a 3.5. I thought I was seeing the light at the end of the tunnel. Then I noticed, 2 days ago, involuntary closure of my eye when I chew, pucker the lips and make a broad smile. I went to a specialist today who confirmed that I have the start of “synkinesisâ€?.  Unfortunately this physician does not know of a NMR therapist with facial neuromuscular training within the greater Portland OR area. I am willing to travel to either Washington State or California for a consult with a reputable therapist… to at least get me started. (If there is not one in the Pacific Northwest – then I will fly further)

Does anyone on the forum here have the name of reputable NMR therapist with facial neuromuscular training (i.e. physical therapist with specialization in facial retraining for Bells Palsy)?

Help!

Trying to “ keep moving forward�

4

[OMG16]

Hi 4 I am sorry to hear you are experiencing a setback.  I'm sending you kisses to your forehead.     

Seattle Facilities these are rehab but if you can talk to a rehab nurse or PT they can direct you to someone who may offer this.

1. Rehab Medicine Clinic at Harborview 206-744-2096
2. Outpatient Rehab Harborview 206-521-1675
3. UW Rehab Clinic 206-598-4295
4. Swedish Stroke Center 206-215-3958  I am not sure if this will be helpful but maybe someone in the clinic knows who you could see.  I have found through our experience sometimes you find the info you need in places not expected.


Approved Facial Retraining Centers in California.

1. England PT Garden Grove CA Teresa England is the PT trained in this 714-703-8477
2. Movement learning center San Diego CA Wanda Crook PT trained in this 760-787-0931

I hope this helps. 

16

[nancyann]

Hang in there 4.   Maybe even try calling Stanford, where you had your surgery, they may be able to help.

Always good thoughts,  Nancy

[Mary 117]

I didn't know that this was something to worry about.  I've had the closing eye when, eating, smiling or puckering for about 1 1/2 years. I just figured it was a small side effect.  Most people don't notice it. I'm not puckering that much in public.  I just feel lucky that I'm not "droopey" anymore. Should I search out someone for help with this?

Thanks, Mary
2cm AN, Middle Fossa, HEI Dr Brackmann, 05/24/05

[4cm in Pacific Northwest]

Mary,

I would just call or e-mail Dr. Brackmann directly and tell him what you have just told us.

I have e-mailed my own surgeon - and I am still waiting to hear back. Being in a different locale than where our surgery was performed is in ongoing issue - as far as post op recovery and help etc.

4

[Soundy]

I still have my eye close when I yawn and if I turn my head hard to right...  as usual my
doctors comment was not to worry ... it isn't bad and is more a nuisance than anything... I
never had facial paralysis just the slight droop a week or two out ...would have to check just when...
and the twitches to side of face and eye
and sometimes when I smile the right side doesn't turn up as much but was told it is not
paralysis just irritated nerve

and

[Soundy]

don't know why that post ran off with out my permission

was saying

yesterday the doctor used little electrodes stuck to face to stimulate nerves and said
all responded appropriately and to not worry about the twitches that have started to come
more often after kinda fading over last little bit... he said call back if mouth became more involved
or tongue...evidently winky eye is not a big deal to him...

I am honestly getting tired of hearing don't worry or wait for a year to be up before worrying


Sorry of little help here... hope you get needed help ...

[vcschaub]

Jackie Diels, at the University of Wisconsin, Madison, is a well known facial retrainer. She has been a speaker at the last few AN conferences. I went to see her with good results. She combines exercises, self massage and botox. The following is a link to the Bell's Palsy site with exercises that are recommended for facial weakness. Some of Jackie's articles are also on that site, as well as information on contacting her. She is also on the advisory board for the Bell's Palsy site.

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

[4cm in Pacific Northwest]

Thank you vcschaub!

This is incredibly helpful information you have shared.

Here is the direct link to Jackie Diels on the Bell’s Palsy website with her excellent articles
http://www.bellspalsy.ws/retrain.htm
(the fact that she mentions my own surgeons work in her references makes me all warm fuzzy- since I respect him so much)

This was another article on her, to share, that was brought to my attention today.
http://www.ophth.wisc.edu/about/fsSummer2004.html#botox

Apparently Jacqueline Diels, OTR (Neuromuscular Retraining Clinic) is also highly recognized in Canada - for her work.
http://www.anac.ca/en/acuteTreatment.shtml
(i.e. she was a resource for the Acoustic Neuroma Association of Canada with their webpage)

… Gee maybe our ANA board should be connecting with her as she would be an invaluable resource (hint hint to any moderators reading this) on getting a “facial palsy information page� together on our site here. Maybe consider putting her article on the links of this page http://www.anausa.org/links.html
under “Facial Paralysis�



I have left a message with her directly requesting to help me find a therapist in my locale .


Thank you 16!
I have been very busy the last couple days leaving voice mails and e-mails with various parties.

Once I find out who in my region I can work with, that meets the requirements as indicated in the Bell’s Plasy Info site, I will be sure to update you all.

Soundy

Gianourmous Canadian Mother bear HUG being sent your way!

Nancy (and my ANA teacher buddies reading on the peripheral),

Amidst all my “googly research� today I came across an article I thought you would appreciate.

http://robotics.me.jhu.edu/~rothbaum/Articles%20to%20read/Importance%20of%20facial%20expression%20in%20facial%20nerve%20rehabilitation.pdf


Moving forward!

Onward Ho Maties! 

Cheers,

4

[vcschaub]

4cm - Jackie Diels is on the medical advisory board of the ANA!!

[4cm in Pacific Northwest]

vcschaub ,

This is great to learn. Then there should not be any obstacles getting her links put on this page
http://www.anausa.org/links.html


I would say we are all pretty fortunate to have such an accomplished person helping us here in the ANA!


So far my attempts to find a therapist in the Greater Portland OR area is turning up nothing  :-\… (I am still waiting to hear back from one hospital’s vestibular lab hoping someone there has some leads) …looks as the more medical travel might be in my forecast.

4

[OMG16]

I'm sorry I was not as helpful as I hoped I could be. I had really hoped that I could help you as much as you have helped me. You would think there would be more offered in our area.  You are an incredible woman and an inspiration to all of us forum members!  I'm going to send you ongoing kisses to your forehead.                16

[nancyann]

Thanks for the link 4.   That's my Dr. Patrick Burne, he is so involved in facial issues.

[4cm in Pacific Northwest]

Oy ya ya … Botox stories

Samples of Today’s news headlines with warnings about botox.

http://www.timesonline.co.uk/tol/life_and_style/health/article3337982.ece

http://www.eontarionow.com/health/2008/02/08/fda-reviewing-safety-of-botox/

http://www.usatoday.com/news/health/2008-02-08-botox_N.htm

Well gee whiz     maybe I should just try the exercises and stay clear of the combined therapy that uses botox...

… I thought some of you involved in trying to help me out here- might find the above news stories of interest too.

4

[marg]

4 I'm sure glad you are doing the 'leg' work  on this search.... (your typing, phone pressing fingers must really be tired by now    ) .  I am anxiously waiting for good news from you on someone local.... if not .... we may have to travel farther  -  this is more than a minor  problem as far as I am concerned.... what if it keeps getting worse??!!!
Margaret