Author Topic: Synkinesis  (Read 5383 times)

mimoore

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Synkinesis
« on: December 17, 2008, 09:35:49 am »
Synka who synk what?
Okay so I couldn't say the word and frankly didn't want to have to learn how to. Sadly I am not only having to learn how to say the dumb word I am researching it... why?  I close my eye and squeeze, as one of my eye exercises, and low and behold the corner of my mouth turns up, when I open my eye it realizes. :o :o :o
I have an email out to my PT to see if there is anything I could be doing or should be avoiding. I will let you know - YIKES thats all I need. I prayed for a smile and I get the smile of the Joker.
Michelle  ???
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.

Catflower

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Re: Synkinesis
« Reply #1 on: December 17, 2008, 09:39:04 am »
Michelle:

My eye and mouth are also in sinc with each other.  I'm 20 months post surgery and didn't even realize it until the neurologist pointed it out to me last week.

Linda in WV

marjoryb

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Re: Synkinesis
« Reply #2 on: December 17, 2008, 09:51:02 am »
Mine , too... my facial "trick" was pointed out to a student at Hopkins who was shadowing my doctor (29 months post-op).   It's my understanding that it's permanent .   If you have information that tells you how to correct this problem, please post it. :-\

Marjoryb

jazzfunkanne

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Re: Synkinesis
« Reply #3 on: December 17, 2008, 10:36:01 am »
i have this too, i was told not too close my eyes tight but gently
over 4.5cm AN removed dec 06

calimama

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Re: Synkinesis
« Reply #4 on: December 17, 2008, 10:42:02 am »
Hey Michelle...

when it rains, it pours!

i thought that the sk----s (whatever) was pretty common and that facial therapy/retraining was actually meant to help correct, recude these problems (since therapy i don't think can bring back movement... that requires time/healing).

I saw Rutka this week and he asked me to close my eye (wont completely) and then smile (only barely... minor mona lisa going on), then eye, then smile, then eye.... i assume he was looking for this kind of mixed signal stuff. I dont think i have it (yet), but dont think i have as much movement as you.

Hope your FT can help out with this.

Best,
Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

LADavid

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Re: Synkinesis
« Reply #5 on: December 17, 2008, 10:48:44 am »
Aw Michelle. :(  From someone who has it, I am really sorry to hear it.  There is an up side to it though -- it is treatable.  I started PT for it back in May and I've really seen improvement.  In the beginning of December I started Botox treatments and I saw a big difference.  There are two other forum members that I know of Chambo and DHM who have it and are seeing great results with PT.  There is another positive -- you are getting movement -- which means the nerves are back -- they just rewired wrong and now they have to be retrained.  And I know what you mean about the smile of the Joker. I had it for about the first three or four months until through PT I learned to relax my muscles.  Nancy and Lainie have known me for about 4 months and the other day they could see the difference since they first met me.  I'm going to Theresa England, a PT who specializes in facial reanimation.  I know how frustrating this all is.  You are working on the same timeframe that I was on 6 months earlier than you.  If you want to PM me, please do, I can give you more input.  I don't know how the medical system works in Canada -- but I would see if you could find a Physical Therapist who deals with the face as soon as possible.

My best wishes.

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

LADavid

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Re: Synkinesis
« Reply #6 on: December 17, 2008, 10:51:49 am »
I forgot to add what Jazzfunkanne said -- don't exaggerate your face movements -- you're only encouraging the nerves that have rewired wrong.  The trick is to keep your muscles as relaxed as possible.

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

Cheryl R

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Re: Synkinesis
« Reply #7 on: December 17, 2008, 10:56:51 am »
Look at the website    www.bellspalsy.ws              Under part 6 of facial retraining is discussion of synkinesis.    This may be of help to anyone with this problem.
                                                  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

mimoore

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Re: Synkinesis
« Reply #8 on: January 03, 2009, 12:41:53 pm »
I see my facial therapist Feb. 6th so will let you know what she says.
I have a feeling that because I cannot frown that the smile muscles pull up with any movement. It will be interesting to see what happens when I can frown.
Does the unconcious blink ever return? I am getting discouraged and am losing the little hope I have.
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.

Kaybo

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Re: Synkinesis
« Reply #9 on: January 03, 2009, 12:56:28 pm »
Michelle~
Please don't lose hope!  If you have had ANY movement then I believe that it will continue to progress - even if it takes a LOT longer than you thought.  It is cases like mine where there is absolutely NO movement at all where it is permanent.  I know that you know this (& probably don't want or need to hear it), but I wouldn't choose to have my face like this - however, I have chosen to make the best of it...at least I am alive and have a great life - even if I don't look like everyone else!  At least you still have soon hope...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Synkinesis
« Reply #10 on: January 03, 2009, 01:39:14 pm »
Michelle -

it's certainly understandable to lose hope; you are going through a lot.

I'm no doctor, but from what I've read here on the forum - and what Kay mentioned too - any movement is generally good, so try to keep your chin up.

The road may be long, and the going may be slow, but persistance should pay off in the long run.

I'm hopeful the facial therapist will have some very positive things to say in February.  In the meantime, hang in there and know that a lot of us are thinking of you.

All the best,

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

sgerrard

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Re: Synkinesis
« Reply #11 on: January 03, 2009, 03:22:20 pm »
Does the unconcious blink ever return? I am getting discouraged and am losing the little hope I have.

Hi Michelle,

Several months ago I saw a presentation by an eye specialist (an oculoplastic surgeon, I think). As I understand it, the blink reflex itself never stops firing; it is just that the signal to the muscles is not strong enough to make them actually do the blink. As you get more manual blink ability, you should start getting the automatic blink as well.

Best wishes for a good 2009.

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.

mimoore

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Re: Synkinesis
« Reply #12 on: January 03, 2009, 04:01:23 pm »
BIG CYBER HUG TO YOU ALL!  :-*
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.

MAlegant

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Re: Synkinesis
« Reply #13 on: January 03, 2009, 07:52:05 pm »
Michelle,
Hang in there because as others have said, you are getting movement back so the nerves are healing.  That's awesome!   Let us know what the Facial Therapist has to say.  In the interim, I used warm compresses and massage to relax my muscle.  It's still pulling but less than before so I know it's getting better.  I know also how agonizingly slow this is.  It's the slowest possible recovery, IMO.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Debbi

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Re: Synkinesis
« Reply #14 on: January 06, 2009, 01:26:02 pm »
Hi all-

OH, what a happy little bunch of crooked smiling, non blinkers we are!  I would also second Cheryl's recommendation to the Bells Palsy website - it gives a very good instruction on how to massage your face, especially for those of us who are having longer term problems with facial movement.  Here's the specific page:  I have printed it out and put it in a small binder so that I can do the movements several times a day.

http://www.bellspalsy.ws/exercise.htm

Hang in there, eveyrone.

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