Author Topic: Skynesis? Anyone had luck with Physical Therapy?  (Read 2190 times)

Klsy281

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Skynesis? Anyone had luck with Physical Therapy?
« on: April 14, 2017, 04:44:54 pm »
Hi all,

I am 10 months post retro-sigmoid on a 4 cm tumor. Immediately after surgery my face was fine and then the next day it went paralyzed. Slowly over 5 months it recovered to basically normal. I was so pleased to have recovered so well. Then about 6-7 months post op I started having the reverse problem. Now my eyelid closes when I yawn, talk and smile. I've heard this is potentially called skynesis. My eye will water off and on and I also have that chin dimple I've read a lot about!  ;)

My neuro-surgeon told me he thinks my facial movement has reached where it is going to, which seems strange to me.  He looked into some physical therapy for the skynesis (although he didn't call it that) if I wanted to try. He said the people who specialized in it are only located in California and one other out of state location (I'm in Oregon.)  Anyway, what he found here is SO expensive. I'm not too interested in doing botox, so what I'm wondering is if anyone has had any success with physical therapy for their face, specifically for the eye closing when smiling?

Thanks!

Cheryl R

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #1 on: April 15, 2017, 09:20:02 am »
There is some info on
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

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #2 on: April 15, 2017, 09:26:08 am »
Ok my post stopped after I put in the website name.     Jackie Diels has info on this site and is a renown facial therapist.   She has trained many other facial therapists.    I have heard she is not seeing patients now but am not sure  of this.   She is in Madison WI.        One way to work on synkinesis is to slowly try to keep the eye open when it is closing during what ever you are doing that it does close.     I have not worked on this enough and should be.        It is a slow process to get the muscle to redo.
    I will pm you and give you the website name.     Hopefully there will be more added by others to be of help to you.
                                               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

ccooper

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #3 on: April 17, 2017, 10:02:38 pm »
I had surgery Feb 2016 and my face also turned off the day after but I've only recovered maybe 60%. I will say my big point of improvement were at 10 and 13 months. I started working with Jackie at about 8 months and she has been life changing. And she is not cheap. $300/hour but its my face so Im willing to pay just about any amount.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

Rhcdad

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #4 on: July 13, 2017, 05:16:29 pm »
I did about 6 sessions of PT in Boston, I  stopped going , but do the excersises twice daily. I also get Botox, I have had two sessions. Between my PT at home and the botox, I feel I am about 40% better. Still no where near prior to surgery. I have been told that I will have this forever and will need to do these excersises to some degree forever. So thinking between the two I have seen improvement.
2.54 cm tumor
TransLab @ House Clinic
Surgery 10/27/15
Numerous Post Surgery Issues

LakeErie

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #5 on: July 14, 2017, 03:56:53 pm »
After GK last Oct I had some facial paralysis starting in late January of this year. Decadron helped the paralysis but in late June I started synkinesis similar to yours. My ophthamologist calls it "jaw - wink."
Voluntary movement of my tongue or mouth / jaw involuntarily tightens the obicularis oculi, or the muscle around the eye. due to the cross wiring of the regenerating axons in the facial nerve.
If I concentrate on not allowing the eye area to contract when yawning etc it stays open. Using a mirror helps me for some reason, biofeedback? I also, on my own, I have no PT, I use my finger to hold my upper cheek in place when yawning or pursing my lips and my eye stays open. I use this as an exercise several times a day. It almost feels like I am stretching the area under my eye. I think it is improving when I chew, but I have to consciously think about keeping it open when I yawn.
It also seems to me that I am getting accustomed to the problem because I notice it less.
While I cannot answer your question about the potential role of PT in my own case, I do feel my own efforts are having some effect
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

JLR

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #6 on: July 15, 2017, 06:49:43 pm »
Hi All I have the chin dimple. Will it go away. So far I haven't any other symptoms like eye closing when I yawn chew etc. is that coming or maybe hopefully I won't get at all. Thanks. Joan

JanSchell@comcast.net

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Re: Skynesis? Anyone had luck with Physical Therapy?
« Reply #7 on: August 08, 2017, 06:59:52 pm »
Funny, I noticed recently that I have a chin dimple.  Is something you notice when your face starts to recover?