Author Topic: Help! Synkinesis has started. Seeking NMR therapist in the PNW  (Read 31115 times)

OMG16

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #15 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
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #16 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
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

marg

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #17 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?
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #18 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
« Last Edit: February 09, 2008, 07:38:47 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

OMG16

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #19 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

I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #20 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

« Last Edit: July 24, 2008, 10:16:51 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Jackie

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #21 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
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

marg

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #22 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
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #23 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

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sgerrard

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #24 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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #25 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 :)

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

marg

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #26 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
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

LADavid

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #27 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
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Chambo

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #28 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!
3.5cm+ LS AN fully removed via Translab surgery on 28 June 2006.
Prof Kaye (Neuro)/Mr Briggs (ENT) at Royal Melbourne Hospital (Melbourne, Australia).
1st post surgery MRI (Feb 07) revealed NO regrowth/residual.
d.o.b. 5 Oct 1978

marg

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #29 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
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !