Author Topic: Synkinesis treatment  (Read 13639 times)

jackieycis

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Synkinesis treatment
« on: October 04, 2011, 12:52:50 am »
Hi,

I'm new here. A new friend just told me this forum.

My facial nerve was severed for almost two years now. I have been doing acupuncture since the surgery, but it seems my synkinesis symptoms are not getting any better. I asked my acupuncturist and she does not really have an answer for it. Do you know is there any special treatment for synkinesis? Any exercise I can do by myself?

Thanks a lot!
Jackie

jackieycis

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Re: Synkinesis treatment
« Reply #1 on: October 04, 2011, 12:58:25 am »
BTW, although it's been so long, there is always this question in my head. My facial nerve was severed because my surgeon said he thought it's a blood vessel since it failed to respond to stimulation. Is it possible for a nerve not to respond to stimulation?

ppearl214

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Re: Synkinesis treatment
« Reply #2 on: October 04, 2011, 03:59:32 am »
Hi Jackie and welcome. Moved to an appropriate section of the forums where your topic may receive better exposure for more responses.  Best wishes, Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

deheisel11

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Re: Synkinesis treatment
« Reply #3 on: October 04, 2011, 01:32:29 pm »
Jackie,
You will find in this section multiple references to answer your questions.  As mentioned by several of us, Jackie Diehls in Madison, Wisconsin is the primo person to go to.  She specializes in facial paralysis therapy.  Also, their are exercises, I believe by Jackie Diels, under Bell's Palsy on the internet.  And yes, some nerves will not conduct an electrical current if damaged.  I had good conduction at the beginning of my surgery but hardly any when they finished.  Best of luck with your synkinesis.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

jackieycis

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Re: Synkinesis treatment
« Reply #4 on: October 04, 2011, 01:56:54 pm »
Hi deheisel11,

Thanks for your reply. I'll read other posts in this section as you suggested.

I didn't make it clear in my original post. I heard about this forum last night and was eager to post. I didn't have AN, what I had was a benign parotid tumor. The surgery is to remove that tumor, but my facial nerve was severed before the surgeon got to the tumor since the nerve was not responding to the stimulation (is the stimulation always done through electrical current?) and was thought to be blood vessel, so it's not like I had a damaged nerve to begin with.

Jackie

jackieycis

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Re: Synkinesis treatment
« Reply #5 on: October 04, 2011, 02:15:12 pm »
I didn't have AN, I guess that's why I didn't know this forum before, but my post surgery symptoms are similar to what AN has due to the severed facial nerve, and I hope this is still the right place for me to ask questions. Thx.

Jim Scott

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Re: Synkinesis treatment
« Reply #6 on: October 04, 2011, 02:25:07 pm »
I didn't have AN, I guess that's why I didn't know this forum before, but my post surgery symptoms are similar to what AN has due to the severed facial nerve, and I hope this is still the right place for me to ask questions. Thx.

Hi, Jackie - and welcome to the ANA discussion forums.

I just want to reassure you that it's perfectly O.K. for you to post questions here that relate to your condition.  Many AN patients do not have a severed facial nerve but the nerve has been traumatized by the tumor or by surgery/radiation.  Often, they can be regenerated, in time.  Nerve transplants are also possible but I'll leave that discussion to those more knowledgeable about the subject than I. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

saralynn143

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Re: Synkinesis treatment
« Reply #7 on: October 04, 2011, 03:02:29 pm »
Jackie - I don't have AN either. My face was paralyzed following a microvascular decompression for hemifacial spasm. It fascinates me that deafness is the most common side effect of HFS surgery, while facial paralysis is much more common for AN surgery. Seems backward, but that's the way it is.

It is indeed possible for a nerve not to respond to stimulation, but that's a bad sign of damage to the nerve. It is routine for surgeons nowadays to monitor nerve response throughout surgery. I have to preface this by saying that I have never been to medical school, but it seems very odd to me that a neurosurgeon would mistake a nerve for a blood vessel.

What was your surgery for? What kind of movement have you recovered and what type of synkensis are you experiencing?
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

jackieycis

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Re: Synkinesis treatment
« Reply #8 on: October 04, 2011, 11:18:00 pm »
Hi Jim,

Thanks! I'm a little relieved, especially this is from a hero member!

Jackie

jackieycis

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Re: Synkinesis treatment
« Reply #9 on: October 04, 2011, 11:39:52 pm »
Hi Saralynn,

My surgery was to remove a parotid tumor behind my left ear. I also knew the nerve will be monitored during the surgery, but my case was before the nerve was identified it's also been cut. It happened during the facelift. Besides not responding to the stimulation, I was also told my nerve is much thinner than normal people, which is another reason the surgeon thought it's blood vessel. Am I really that lucky ?!

I started having movement about 8 months after the surgery. Now I can smile, but it can show 4 teeth on the right (the normal side) but only 1 to 2 teeth on the left. I didn't put the gold weight although the doctor did suggest, but I was too scared to have another surgery, so I have to use tape to help shut the eye during night and use eyedrop all the time during the day. My synkinesis is when I blink the eye, there is a twitch on the left end of my lip.

Jackie

4cm in Pacific Northwest

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Re: Synkinesis treatment
« Reply #10 on: October 09, 2011, 09:02:39 pm »
Do you know is there any special treatment for synkinesis? Any exercise I can do by myself?

Jackie,

Well this therapist will be easy for you to remember being you have the same 1st name

Jackie Diels specializes in treatment for synkenisis. Here is a University of Wisconsin article about her work.

Neuromuscular Retraining and Botox:
Powerful pair in treating facial paralysis by Elizabeth Koenig

http://www.ophth.wisc.edu/publications/fs_summer_04.pdf

Here is a list of Treatment Centers on the Bell’s palsy Information site
http://www.bellspalsy.ws/centers.htm


Here is an article written by Jackie
http://www.bellspalsy.ws/retrain.htm

That should be enough reading material to get you started and provide answers to your questions.

My answer to you is,
  "Yes something CAN be done to improve synkenisis. We cannot go back to complete normalcy but we can make improvements towards it."

Daisy-Head Mayzie (AKA "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!