Author Topic: Help! Synkinesis has started. Seeking NMR therapist in the PNW  (Read 7914 times)

LADavid

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #30 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
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 #31 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
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

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #32 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 improvement8) 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     

           
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!

Debbi

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #33 on: July 31, 2008, 02:38:58 pm »
Great news, DHM!!  I'll keep fingers crossed!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Chambo

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #34 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 improvement8) 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
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

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #35 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
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 #36 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
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 #37 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
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 #38 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
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 !

sgerrard

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #39 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
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 #40 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
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 #41 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)
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 !

mimoore

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #42 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
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Chambo

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #43 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...
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

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #44 on: October 08, 2008, 01:45:00 pm »
Chambo,

Great news! :)

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!

 


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