ANA Discussion Forum

Post-Treatment => Facial Issues => Topic started by: 4cm in Pacific Northwest on February 06, 2008, 09:53:50 pm

Title: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 06, 2008, 09:53:50 pm
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


Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: OMG16 on February 07, 2008, 02:23:20 am
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: nancyann on February 07, 2008, 05:51:03 am
Hang in there 4.   Maybe even try calling Stanford, where you had your surgery, they may be able to help.

Always good thoughts,  Nancy
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Mary 117 on February 07, 2008, 12:30:40 pm
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 07, 2008, 01:54:50 pm
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

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Soundy on February 07, 2008, 02:16:05 pm
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Soundy on February 07, 2008, 02:21:58 pm
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 ...
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: vcschaub on February 07, 2008, 02:38:30 pm
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 07, 2008, 09:40:47 pm
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!  :D

Cheers,

4



Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: vcschaub on February 08, 2008, 01:35:47 pm
4cm - Jackie Diels is on the medical advisory board of the ANA!!
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 08, 2008, 02:00:32 pm
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: OMG16 on February 08, 2008, 02:06:57 pm
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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: nancyann on February 08, 2008, 05:20:04 pm
Thanks for the link 4.   That's my Dr. Patrick Burne, he is so involved in facial issues.
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 08, 2008, 09:56:30 pm
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

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on February 08, 2008, 10:54:15 pm
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  :D  ) .  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
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: OMG16 on February 08, 2008, 11:49:48 pm
I am so glad that I declined to have it used on my son 2.5 years ago.  I could not find allot of info for use in pediatric patients and so I did not feel comfortable with it being used on him.  Thank goodness however I am sure it has helped many patients.

Thank you 4 for posting these links!!  16
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 09, 2008, 09:29:48 am
16,

 Ã¢â‚¬â€œ it is an on going process of us patients asking questions about treatments… and us trying to figure out what new “latest and greatestâ€? medical treatments will then later come under scrutiny for the FDA & CDC.

Marg,

Take at least 1 hour a day in a quite room. Get a heat pad (the microwave kind) to relax your face and keep doing the exercises from
http://www.bellspalsy.ws/exercise.htm
 faithfully.

When I first started  eating alone in front of a mirror I was mortified to see so much inappropriate action was happening (Why did my family not point this out before?)...  however after a week of trying the exercises (devoting 1 hour a day) I am finding I can control the synkinesis - to a point. Yesterday when I ate in front of the mirror (Any onlooker would have thought I was a loony tune- however I live in a rural area where no one can peer in )… and I had more control of the funky eye blinking dance by Friday.

The key is you have to take one hour devoted “to yourself� (gasp) and you have to be in a space and mind set where you can “relax� fully. (I.e. do not answer the phone if it rings while you are doing this)

I will keep searching for a therapist – and hey Marg if one is a bit of a drive we could always carpool together. Some therapists, for their out-of-town clients, will do a 3 day intensive session and then send you home with a package of work materials to last until the next visit- in 5 months… .

The key is to find one and to make sure our insurance will cover the treatment.

I am not giving up as I am pretty motivated to get help not just for me – but for others in the PDX area. I am amazed that OHSU does not have a therapist they are connected with... Goodness we can’t be the only patents with facial palsy recovery- going through this.

I am going to keep digging for resources in our locale- but if we have to travel we could always go together.

The key is we know that we do not have to go through this alone…

Keep moving forward!

Onward Ho maties…

4
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on February 09, 2008, 01:35:49 pm
Great 4.... yes I would do a car trip.... or even a plane trip to get this under control. I know there is a center for this in Atlanta. 

      I will go for the hour a day ( thanks for the advice.).  Finally got the taxes done for me & my daughter and we filled out her FAFSA forms today ( this is such a huge load of work.), also have a majority of the medicade stuff done for the aunt who died 2 weeks ago.... so I should be able to cut out an hour for me....  at least for 3 weeks until I start working on grades and report cards.......... :(   but I will make it a priority .
   
       I think some of my problem is that I clench my jaw at night ( I can't control this...& use a mouth guard)  and of course it is worse with stress - which there has been plenty of lately - but notice that my AN side of the face is much tighter in the morning when I get up.   .... Don't you love my 'run on' sentences ?  :D  I guess that is typical for a 2nd grader though   ::) .
     Thanks,
marg

P.S.  4 did you do the hour all at once .... or in smaller sections?
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on February 09, 2008, 07:32:15 pm
Marg,

“All at once� …. when I have the house to myself with not interruptions.


While I am taking this year off, in recovery mode, this is what I am doing for my self-directed daily rehab routine

•   40 minutes power walk up and down hill
•   20 minutes on the palates ball and/or doing floor work- focusing mainly on balance
•   40 minute of facial exercises. (All the exercises on the sheets at once …be sure to do the part for long timers too (n the last page) especially the massage where you put your thumb inside your moth and fingers on the cheek and pull- however those who do not have any movement yet should NOT do that message)

Retrain the brain
Everything I have read has indicated that it is better to do this now (post recovery months) than later so we can retrain the brain before bad habits or overcompensation ticks start to set in.

One surgeon I interviewed explained to me that it is much like being a toddler after surgery. We have to learn things for the first time. (I now agree) One day I plan to “ride a bike AND chew gum at onceâ€? – however I doubt I’ll say “hey mom look- no hands!â€? … again (and guaranteed I will be wearing a helmet –   :D unlike when we were kids in the ‘70’s)

One of my follow-up physicians, here in Portland, said that I will never regain the balance I had pre-surgery. Humph I say, “bologna- where there is a will there is a way!� Also many people in the kinesiology and occupational therapy world will dispute his statement too. I am highly motivated to prove him wrong. I am even working on pirouettes… which he said I will never be able to do. So far I can do 2 in a row before I feel tipsy…

I am going to control this AN – it is not going to control me. If I have to learn to eat without people thinking I am winking at them all the time – then I will learn it. I am going to walk in public at dusk- without people assuming I am a drunk by practicing walking in dim lights at home. Remember being a teenager trying to walk around the house with high heel shoes as you prepared for the graduation ceremonies and ‘the prom’? … It took some practice… and the determination to not look foolish (in my case also not to look too short  ;) :D) in front of the peers … I remember my Grandmother making me walk with a book on my head… up and down the stairs at home. (Hilarious when I see my own teen doing this now.  :D ) Eventually we learned to do something rather unnatural to the human brain (not mention feet and back) and we learned to be graceful about it. My choice is to wear comfy sneakers – but I can wear high heals if the occasion requires it.

Yesterday my youngest pulled out my flute and said, “Can you play for me Mommy?â€?  I could not.  Not only is the embouchure shot -I cannot close my lips. Her little 3rd grader innocence face looked at me sadly- but them her face brightened when I said, “Well I always wanted to learn a sting instrumentâ€? … I.e. I have not lost my music skills it is just I have to find a different instrument to display it on.  I am going to have to learn to play music differently.

 I am also going to have to learn to blink and chew food differently…

We've  just got to find new ways to do this.

Keep Moving Forward.

4
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: OMG16 on February 09, 2008, 09:58:56 pm
I to agree that the Doctor should not say never.  I know that my sons rehab Dr and his OT had the attitude of he can do anything he wants to do and did not put any negative energy into his recovery.  It sounds like you have the same attitude that I have always had about when you are told you will never do this or that it just drives you harder to accomplish that goal.

My son was a flute and electric guitar player before his stroke and they have classes in our area that they may offer in Portland called 44school for music and he had a great teacher that showed him some different ways of playing the piano that could be of benefit to you for a string instrument.  Just a thought and if that does not work they offer singing lessons which he loved.  16

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on July 24, 2008, 10:12:54 pm
 
 Almost 6 months later I have an update to this thread for you all…

  My neuromuscular facial retraining therapist and my neuro ophthalmologist finally met in person today.   We were all in the same state at the same time. (She is based out of San Diego and he in Portland OR). I introduced them via e-mail and we all came together and today I "braved the botox"…


(Actually I hardly felt it being injected  )

Remember when I made this post for help?…
http://anausa.org/forum/index.php?topic=5846.0

Well I found one! … And she came to me (by coincidence she was already coming to Portland for a different reason to visit) Thanks to Jackie Diels telling me about her successful graduate... It was a successful visit - and she is now willing to come here (Portland) to help others, on quarterly bases, in addition to me. So today she returned and met my neuro-ophthalmologist (in person  ) … and a partnership was made.  We hope to have them both present to our Portland ANA group -later this fall.

I survived the botox injections  (so far anyway) even to write to tell you-all about it.

My success on getting help would not have happened if it was not for all my AN buddies input here… thanks to those who hover around the “ facial issue â€? button on a regular bases.  Thanks to vcschaub especially – in my story here.

I’ll update you on how the synkinesis improves with this…

Keep moving forward!

DHM



P.S. OH...My new neuromuscular facial retraining therapist  is  ... drum roll please..."Wanda Crook"
http://www.bellspalsy.ws/centers.htm
&
http://www.feldenkrais.com/practitioners/find/browse/USA/CA/San%20Diego/

This is my neuro ophthalmologist ... Dr. John Ng
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302

IE in the Pacific Northwest we now have a  "neuro ophthalmologist AND facial retraining therapist" team TOO! ;D

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Jackie on July 25, 2008, 12:27:43 am
Hello 4cm,

Just wanted to congratulate you on putting together this new team of therapists! You have really worked hard and I hope that you experience complete success!
This is truly a wonderful accomplishment that will help others also! Thanks for your diligence, may your rewards be great!

Jackie
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on July 25, 2008, 10:07:14 pm
Hi 4,
   I am so glad that you are in process for your facial retraining..... what I think people will want to know is .. do they have to make an appointment with Dr. NG before we see Wanda?
marg
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on July 26, 2008, 08:54:31 am
Marg,

Dr. Ng & Wanda are still in the process of setting up -so she can come into OHSU to have a clinic partnership going with him… There are lots-of-logistics to work out with a BIG institution such as: insurance, billing, on-line video feedback, privacy policy etc… but they are both pretty committed and proactive to get this off the ground -for us patients in the PDX (and yes even those who commute into the PDX area etc.)

I did a few months of stretches, prescribed by Wanda, after a long evaluation session, before I had the botox. These helped. You might want to contact Wanda to see when she is next in our area. She does not deal with insurance companies. I paid out-of-pocket first and then we sent the receipt into my insurance company for reimbursement… For me she was out-of-district. There are NO NMFRT’s in this area so I am happy to have her …in-district or not.

If you want the botox – you need to set up an appointment with Dr. Ng.  However I highly recommend that you see her first- for an evaluation. If you are still having to use eye-drops you may want to see him for an eye weight -at the same time. He is very professional and personable- I highly recommend him.

By seeing Wanda first she can decide if botox is really actually needed and where it should be injected. With me -we went on the conservative side and a low dose. It usually takes 3 days for the effects (and side effects) to be evident.


So far I see no change…  :-\ The tight neck and chin dimple are still there… I’ll keep you posted… as you know …I can be an impatient patient.  ::) I need to give it more time.


Signed your sentinel canary in the mine shaft… ;)


DHM

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: sgerrard on July 26, 2008, 04:33:24 pm
Hi Daisy (and Jackie and Marg),

How likely is it that we can meet Ng and Wanda at the fall ana group meeting?

Steve
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on July 26, 2008, 09:00:29 pm
Steve,

I am thinking the 1st fall meeting will most likely be a sharing and caring as Dr. Ng is not available to speak until November. (He is a surgeon, teacher and author… not to mention very personable guy)

Jerry and I still have to connect on the details of this .

We are in the throws of having them both, Dr. Ng & Wanda Crook, put a presentation together for our PDX ANA group. Dr. Ng has even offered the Casey Eye Institute auditorium/lecture hall/seminar room- if we want to use it as our meeting space for that time. They will, for sure, need access to a power point projector etc. We are still in the planning stage. The details, time and date of their presentation, will be “TBA�.

So yes hopefully this fall …however later in the fall.

Be sure to come, Steve, and bring your wonderful sunny deposition. I’ll be sure to wear my sunglasses.  8) Tease


DHM :)

Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on July 27, 2008, 11:09:38 pm
Thanks for the info DHM.  I will look into contacting Wanda  when I get a chance.... I am still in the middle of the "parent need " situations.  Now I am going to help MY parents move back to Tacoma in  1  1/2 weeks ... and shortly after that help with going through all the stuff they can't move with them into the assisted apt.  My husband's mom seems to be doing ok where we moved her 3 weeks ago .... but I still have a garage full of furniture that I need to get rid of.  My main question is ...... is it REALLY summer out there??? I'd love to sit back and enjoy it  :o .  I still am hopeful that I will get a bit of a break before I pick up my building keys on August 15th (ah yes... hope springs eternal).  I'm begining to think that going back to school will be restful after this craze summer.
marg

Glad you are our canary in the mine shaft..... you better "keep singing"   :D
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: LADavid on July 28, 2008, 05:34:56 pm
DHM

Good news.  I'm glad that you're making progress.  I am as a fellow synkinesiser, curious.  My therapist is holding off on the Botox till December -- which will be my one year surgery anniversary.  When you got the shot, what type of improvement did you see?  I've been in therapy since May and the progress has been tediously slow.  I can now drink from a straw where I couldn't when I started.  But now my neck muscles have got into the action and eating is a three-ring circus with my eye, mouth and neck all trying to do something.

Wishing you continued improvement.

David
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Chambo on July 28, 2008, 06:58:51 pm
Steve,

I am thinking the 1st fall meeting will most likely be a sharing and caring as Dr. Ng is not available to speak until November. (He is a surgeon, teacher and author… not to mention very personable guy)

Jerry and I still have to connect on the details of this .

We are in the throws of having them both, Dr. Ng & Wanda Crook, put a presentation together for our PDX ANA group. Dr. Ng has even offered the Casey Eye Institute auditorium/lecture hall/seminar room- if we want to use it as our meeting space for that time. They will, for sure, need access to a power point projector etc. We are still in the planning stage. The details, time and date of their presentation, will be “TBA�.

So yes hopefully this fall …however later in the fall.

Be sure to come, Steve, and bring your wonderful sunny deposition. I’ll be sure to wear my sunglasses.  8) Tease


DHM :)



Hey DHM

Thanks for the update!

My random movements are gradually reducing. My neck muscle isn't as bad and my chin dimple is reducing. I'm wondering if it's worth getting botox injections into these areas as well as my forehead as this is still coming back to life.

What areas of your face/neck did you have your injections?

Thanks!
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on July 28, 2008, 11:51:48 pm
Hey  Chambo.... are you saying that the synkinesis is improving on it's own more than a year after your surgery?  Maybe I read it wrong.
marg
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: LADavid on July 29, 2008, 02:41:38 pm
Hi Marg
Simon (Chambo) has been going through physical therapy for about the last year.  His results encouraged me to pursue PT about 4 months ago.
David
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Chambo on July 29, 2008, 09:43:12 pm
Hey  Chambo.... are you saying that the synkinesis is improving on it's own more than a year after your surgery?  Maybe I read it wrong.
marg

Sorry Marg, i started PT about 6 months ago which included a lot of inside the mouth massage to release tight face muscles (ie - like a tight hamstring; same principles).

This has improved the synkinesis but i also expect time has played a big part in this. I am now 2 years post op and am seeing the same regular (but slow) improvements I have been seeing since the first twitch in the corner of my mouth at the 3 month post op mark!

Cheers

Simon
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on July 31, 2008, 10:47:33 am
Sorry for the late reply- I have been off line and on the road...

I am 8 days post botox. Yes there is an improvement.  8) We injected the neck muscles and the chin only ... now I don't need they eye weight again (go figure we did not even botox near the eye) and the eye does not moved when I eat now! :) Also more of the upper teeth showing when I smile being that the overactive neck muscles are not pulling the face ... so ... SO far so good.       ;D

DHM     

           
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Debbi on July 31, 2008, 02:38:58 pm
Great news, DHM!!  I'll keep fingers crossed!

Debbi
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Chambo on August 01, 2008, 01:03:16 am
Sorry for the late reply- I have been off line and on the road...

I am 8 days post botox. Yes there is an improvement.  8) We injected the neck muscles and the chin only ... now I don't need they eye weight again (go figure we did not even botox near the eye) and the eye does not moved when I eat now! :) Also more of the upper teeth showing when I smile being that the overactive neck muscles are not pulling the face ... so ... SO far so good.       ;D

DHM     

           

That makes perfect sense. My PT's goal has been to relax the large neck and chin muscles. Why not let botox do the same job.

Your improvements are as expected as with those 2 key muscles relaxed, they are not fighting with the lip or eye muscles that are trying to work properly.

Who did you see for the botox injections? ie - what type of doctor and/or specialist?

Thanks!

Simon
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on August 03, 2008, 09:40:40 pm

   


Who did you see for the botox injections? ie - what type of doctor and/or specialist?

Thanks!

Simon




Neuro-ophthalmologist
http://en.wikipedia.org/wiki/Neuro-ophthalmology

This is he... nice guy...
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302

(got to love all the vowels in his last name ;) ;D )

DHM
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on September 11, 2008, 11:11:48 pm
Seems like it has been a while since there has been more info on this.    DHM   what is the latest on your facial theropy?  I would have been on here asking sooner but my mother - in - law died in the middle of August and I started school at the end of August and just now have a little time now and again to get on the AN site.
Hope you are continuing to improve.  In a few weeks I should be able to 'climb out of the stuff I still need to take care of from my Mother-in-law's passing and look into doing something about my own facial paralysis.
marg
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on September 20, 2008, 09:25:51 am
I have not been on-line much as I have been swamped with the kids' back to school routines  :-\ …. Sorry for  the late reply here – Marg.

Up until last week I had a month plus of almost normalcy  ;D (with the exception of my eye brow not moving) – and never needed the eye weight at all. Since the botox my upper lip started to function and you can now see the some of my upper teeth when I smile. I have had a significant increase in movement ….


However …This last week plus I have started to wear the eye weight again and I am noticing that my neck and chin muscles are getting tighter again and the chin dimple is making a small reappearance. Sadly the botox is now wearing off-  :-\  and next month I will return for more injections ….and yes I will agree to a higher dose in each neck muscle- this time. What this did was buy us some time to reduce the overactivity of the firing  muscles and give the other ones, that were not yet firing,  a chance to catch up or even just start to move- without being tugged the wrong direction by the overactive muscles (that came back to action first and are stronger than the others)

What improved and has started to stabilize, even now that the botox is wearing off, is that my eye does not involuntarily close as much when I smile, pucker or laugh etc. My upper lip still seems to be able to smile- which it could not before botox as the lower lip and chin were so overactive.

Basically I am in for injections every 3 months X 3. This was round #1 of 3. It was great to have normalcy for a while and there was actually some facial muscle rehabilitation during this window of time. I was too busy with back-to-school family activities and did not have as much time and opportunity to diligently follow the retraining plan, the last weeks, as I had hoped. Nevertheless during the summer I was diligent about doing my stretches and exercise prescribed to me.

After the botox we saw a huge difference within a matter of two weeks. Now the botox is wearing off -things are tightening up again… Nevertheless there are now muscles and nerves firing that did not fire at all -before.

It is a slow process. I am trying my hardest to be a cooperative and “patientâ€? patient.  ::) Neurological healing is slower than regular muscle healing… and I am learning not just to retrain my facial muscles – but also my patience.

DHM
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on September 23, 2008, 08:45:35 pm
That's great DHM.  Is the lady in Portland yet ready for other patients - or are you the only one she is working with up here?  I would love to check it out now.  I too have been very busy (mother-in-law sick all summer and then passing away in mid August, moving my parents  taking my daughter to college and teaching school too).  I think I can fit in ME for a change and I want to do that .  I startied useing a Wii 30 minutes a day and have noticed a very big difference in my balance and confidence with movement. 
marg
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: sgerrard on September 23, 2008, 09:00:45 pm
Hi Marg,

Check out DHM's recent giant post here:
http://anausa.org/forum/index.php?topic=7537.msg79500#msg79500

It is an announcement for the next ANA Portland meeting, Dec. 6th, featuring none other than Dr. Ng & Wanda Crook. So maybe you can ask her yourself!

Plus it would be nice to see you again. :)

Steve
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on September 23, 2008, 09:04:48 pm
Is the lady in Portland yet ready for other patients - or are you the only one she is working with up here? 

Marg!

 ;D :)
Great to hear from you (twice- I just got the voice mail!). So Wanda Crook is still setting up and the all the hoopla hoops are still being jumped through to get her set up with the the team at OHSU Casey Eye - hopefully by spring this will all be in place... for others too!

The Wii sounds very cool! Hey maybe they will come up with an exercise program for the face! LOL  :D

DHM
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on September 29, 2008, 11:33:33 pm
Thanks DHM and Steve.  I would love to go to the Dec. meeting.  Wanted so bad to be at the  Sept. one.....but we had to move all my daughters stuff up to University of Washington.  Believe me after driving to Seattle ( 150 miles away) and helping carry things up to the second floor (no elevator)...... I would have much rather been at the meeting with all of you  ;D ... I must admit though my daugher was a very greatful girl....
marg

P.S.  The Wii  does have an exercise for the face.... sort of...... laughing at myself when I loose my balance and my little person falls in the water etc.  Of course my smile still needs work (lol)
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: mimoore on October 02, 2008, 12:43:46 pm
That is great DHM that things are improving. Let us know how things go after your next botox injection.
Keep moving.
Michelle  ;D
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Chambo on October 07, 2008, 11:22:26 pm
Quick update - I had botox injections into muscles that should not be moving (ie - synkinesis affected muscles). These were mainly the chin and neck muscles but my neurologist also put a few around my good eye to even up the crows feet (he said you don't want to look like you've had a stroke).

Anyway, the botox in the neck and chin muscles have been brilliant. My smile is much larger and more natural now as the synkinesis pull from my chin and neck muscles were distorting other natural muscle movements. Very happy...
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on October 08, 2008, 01:45:00 pm
Chambo,

Great news! :)

DHM
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: Chambo on October 10, 2008, 03:36:31 pm
Chambo,

Great news! :)

DHM

Thanks DHM.

My physio will be so pleased. She was trying her best to calm down the overactive neck/chin muscles in order to improve functions elsewhere, but it was a slow process. BANG, a couple of botox injections and 48 hours later, full smile. Never thought i'd have so much love for botox. And the botox neuro knew of my Physio - he said she was the only one he was aware of doing AN related physio in Melbourne. At least I was seeing the right person...
Title: 4 years post surgery and still improving
Post by: lifeisgood on October 12, 2008, 10:29:49 pm
Hi there,
This recovery thing is sure a journey.  I totally relate to the synkinesis.  I also thought at 6 months I was looking pretty good until I started looking at pictures and my eye was closing more on the right.
I definitely do NOT have the same smile as before, but, my face is getting better.
Ladies, I definitely recommend a slight bang to "hide" the expression lines.  I have no lines on 1/2 my face but didn't think bangs would be a good thing for me.  It's turned out great. 

I visited Jackie Diels in Wi around 12 months post surgery.  I really thought she was helpful.  She made me realize that what is causing the imbalance is not too little movement on the AN side but TOO MUCH!  That was initially hard for me to get.

I wrote an article on this journey a few years ago and all I have to do take a look at the almost 100% paralyzed side of my face 1 month later and there is a lot of gratitude.

I will be honest, I am self conscious.  I am going to read books to my little kindergartners class twice a month and I know that my face looks different.  Little kids pick up on that thing.  I always wonder if they will at some point in time ask my son or say something to me. 
I'm 44 and you think I would just get over it but sometimes it is hard.

Mary
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: marg on October 13, 2008, 10:47:49 pm
Mary,   
     I just had to reply to you.  I totally understand about the synkinesis - and being self-conscious.  I am a 2nd grade teacher and this is  my second group of children since my brain surgery.  The facial paralysis is much harder to deal with than my SSD or balance issues - because everyone can see it.  I try to forget about my facial issues every day as I stand up in front of 27 2nd graders plus everyone else at school.... some days I do better than others..... ( I didn't do very well last Sat. my sister-in-law gave me a picture of her, another sister-in-law and me at her mom's memoral service in August.  My facial paralysis looked so bad that after she left I tore up the picture and threw it away).  Anyway, back to my classroom of kids.... I have talked to them about my SSD, balance and facial paralysis.  They have no problem with it - and if they have questions about it I just tell them the facts and we go on.  I'm sure I could give you much better info. but it has been a long day and I'm too tired to think well right now.  Just mainly wanted you to know that there are others of us who understand ..... and care.
marg
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: LADavid on October 14, 2008, 05:46:15 pm
Excellent news, Simon.  I'm starting Botox Treatments on December 5th -- really looking forward to it.  How are your treatments going DHM?
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on October 14, 2008, 08:11:40 pm
In a week I will have botox injection #2- I'll update you once that starts to work...

Yesterday I had to wear the eye weight and the face was all tight  :-\ ... today I did not have to wear it and my face was relaxed... :) it oscillates

How are are you doing with yours- David?

DHM
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: LADavid on October 16, 2008, 06:44:05 pm
DHM
When I think about the progress day to day, I see no improvement.  But when I compare it to last Spring, it's a huge improvement.  I have an appointment with Theresa England tomorrow.  She's better at spotting where I am improving and where I need work.  The Botox starts in December.  I'm looking forward to it.
David
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: mimoore on October 16, 2008, 07:12:32 pm
That is so true David. I would sit in front of a mirror each day and get so bummed. I started taking pictures first every two weeks then once a month and when I feel down I pull out the pictures and realize I am getting better. I don't look so tired, tone is geting better... others would say "Oh you are looking so good" and I would think, yah whatever, you are just trying to make me feel better, thanks but I don't believe you. I need to see for myself and with the pictures I can.
Michelle  ;D
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: 4cm in Pacific Northwest on October 17, 2008, 08:38:27 am
Still pictures “sort ofâ€? give you an idea.  :-\

What is the real documentation is “videoâ€?. Because my NMFT is out-of-state I make videos, following her script, in the same place with the same lighting each time. I then send these in the mail – she views them and we discuss the progress on the phone. This way we see what movements are improving and what are still off.  Soon we will be set up for long distance secure video conferencing... so we don’t have to wait for the mail/courier delay. (Yeah -lets here in for the engineers who developed the internet!!)

EG
 In the earlier days I would stick out my tongue and it would pull to one side- now it is straight. When I used to purse my lips my eye closed… now I can now purse my lips without lower eyelid involvement… “ifâ€? I concentrate.

 I highly recommend making video tapes… it also gives you feed back of what abnormal movements need correcting.

E.g.
When I close my eye I cannot see what my cheek is doing in the mirror- but I can in the video tape. My cheek still pulls up. I was not aware of this until I viewed the video… so I went back and have decided to keep wearing the eye weight until I have this movement nipped-in-the-bud. My eye does not need the eye weight- but my cheek still does because I am using it to get full eye closure- which is increasing abnormal moments (and perhaps abnormal nerve wiring to the muscles- i.e. motor neurons)

It is much like a dancer practicing for a whole season in front of a mirror- then moving on to dress rehearsal not knowing how in sync they are- or not.  Often I would video (film) my dancers before their dress rehearsal stage …so they can see what others see. It always amazed me how much they improved, and finally listened to me, “afterâ€? they saw for themselves -the video.

When I first viewed video of how bad my synkinesis was I was mortified and it was a harsh experience…. However it motivated me to work much harder, and more diligently, at the prescribed exercises. I really see NMFR much like dance training… you have to keep repeating the movement until it becomes automatic in the brain. Most people cannot do a pirouette immediately- it takes training and practice- particularly if you are to do one in sync with other dancers beside you. The facial muscles are much like this as we try to get one side to match the other… it takes practice.

“Still photography� will not show you the “animation� of the face. I find that I can get a better still picture now of my smile but what I really want is more normal facial movement so people don’t look at me so strangely when I talk to them. Still photography can lie - however the raw video footage cannot. It helps you to see what others see and forces you to work more at it… Video is providing me with the honesty I want even if at times it is painful for me to watch my videos… Nevertheless this month’s video showed much improvement from previous months… This is all going at a snails pace. But hey here in the PNW I know that the snails eventually gets there – being that my bedding plants were eaten up as soon as the rains started up again- by snails. Snails do eventually reach there destination…

DHM … doing the snail face dance    ;D  ;)
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: mimoore on October 17, 2008, 08:54:12 am
GREAT ADVICE! It would have been hard for me to discover the tiny blink without video.
Michelle  ;D
Title: Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
Post by: LADavid on December 05, 2008, 07:45:45 pm
I started Botox treatment today!  Yea.  Three shots in the eyelid and three in the neck.  Ouch.  But I was happy to get it started.  DHM and Simon, how are you both doing?

I can't wait to see results.

David