Author Topic: Need Synkinesis Advice/Input  (Read 20416 times)

LADavid

  • Hero Member
  • *****
  • Posts: 940
Re: Need Synkinesis Advice/Input
« Reply #30 on: May 05, 2008, 06:46:34 pm »
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
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Need Synkinesis Advice/Input
« Reply #31 on: May 07, 2008, 06:42:58 am »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: Need Synkinesis Advice/Input
« Reply #32 on: May 07, 2008, 07:17:38 am »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: Need Synkinesis Advice/Input
« Reply #33 on: May 07, 2008, 07:22:15 am »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Need Synkinesis Advice/Input
« Reply #34 on: May 07, 2008, 02:15:52 pm »
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)


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!

LADavid

  • Hero Member
  • *****
  • Posts: 940
Re: Need Synkinesis Advice/Input
« Reply #35 on: May 07, 2008, 07:44:54 pm »
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
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Need Synkinesis Advice/Input
« Reply #36 on: May 07, 2008, 09:53:54 pm »
David -

almost forgot about the 5K run.  Good luck to you and your daughter. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Need Synkinesis Advice/Input
« Reply #37 on: May 08, 2008, 03:17:22 pm »
David,

Good luck with the run.  What a nice way to spend time with your daughter!  That's sweet!   :)

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

HeadCase2

  • Hero Member
  • *****
  • Posts: 778
  • Carpe Grog
Re: Need Synkinesis Advice/Input
« Reply #38 on: May 14, 2008, 02:08:52 pm »
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

 

  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."
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Need Synkinesis Advice/Input
« Reply #39 on: May 14, 2008, 02:12:58 pm »
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
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Need Synkinesis Advice/Input
« Reply #40 on: May 14, 2008, 03:37:49 pm »
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,
 Ã¢â‚¬Å“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








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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Need Synkinesis Advice/Input
« Reply #41 on: May 14, 2008, 04:10:35 pm »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Need Synkinesis Advice/Input
« Reply #42 on: May 14, 2008, 04:25:37 pm »
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
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

LADavid

  • Hero Member
  • *****
  • Posts: 940
Re: Need Synkinesis Advice/Input
« Reply #43 on: May 15, 2008, 12:08:28 am »
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
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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Need Synkinesis Advice/Input
« Reply #44 on: May 15, 2008, 01:53:03 am »
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
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.