Author Topic: Your Synkinesis Experience  (Read 12393 times)

Kristena

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Your Synkinesis Experience
« on: December 15, 2013, 11:25:34 am »
I just hit 6 months post surgery, and I would love to hear others' experience with synkinesis. I had nearly complete facial paralysis on the right side, then about 2 months ago I noticed very slight movement in the apple of my cheek. That totally made my week! Now I can make a slight closed-lip smile and match it up with my good side just in time for Christmas. I'm not afraid of pictures anymore!

However, almost EVERYTHING I do shows some synkinesis. My eye squints when I: smile, try to raise my eyebrow (no movement there), pucker, snarl, look up, look right, open my mouth wide, swallow hard (weird). The corner of my mouth raises when I: try to raise my eyebrow, blink, try to close my eye, snarl. My neck tightens up when I do a few things too. My facial therapist has had me stop all exercises other than various massage techniques 2-3 times a day and trying a few "mind over matter" relaxation exercises.

I know everyone's different, but in your experience, do these lessen over time, can I expect more to develop, will I require botox for the rest of my life, etc? I know I'm really early in my recovery, but I need to get a handle of what to expect now so I'm not overly hopeful. I'd love to hear the experience of others. Thanks!
« Last Edit: December 21, 2013, 08:37:34 am by Kristena »
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

leapyrtwins

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Re: Your Synkinesis Experience
« Reply #1 on: December 15, 2013, 05:25:50 pm »
David Shannon (known as LADavid on the Forum) has synkinesis.  Search for his posts; you may find them very helpful.

Also, he wrote a book about his AN experience (called something like Hell in the Head) where he goes into detail about his AN Journey and his synkinesis.  I think you'll find his book on Amazon.com

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

Kathleen_Mc

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Re: Your Synkinesis Experience
« Reply #2 on: December 16, 2013, 01:23:28 am »
I have synkinesis. I no longer find I think about it, it just is. I notice it mostly in photo's (which are a rare thing 'cause I hate having my picture taken now)......sometimes my face pulls so tight it hurts, massage helps.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Gloria Nailor

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Re: Your Synkinesis Experience
« Reply #3 on: December 16, 2013, 07:58:43 am »
My right side of my face was totally paralyzed after my surgery and a week before my year anniversary I regained a lopsided smile.  I have some synkinesis too, when I smile my eye closes a bit.  My therapist gave me excercises to do, but truthfully I was unable to stop it and I stopped the exercises.  I now see it as just more movement in my face, I try to be positive about it, that at least it is movement.  I do not believe it will lessen with time, but it hasn't gotten worse and I am 2.5 years out from surgery now.  I had been told that recovery can take up to 2 years, so a smile at 6 months is very positive, hopefully you will regain more : )  I don't think I would ever do botox, unless the synkinesis became so tight that it didn't relax on it's own. So glad you can feel good about your smile and getting your picture taken again.  Be well.
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

Cheryl R

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Re: Your Synkinesis Experience
« Reply #4 on: December 16, 2013, 09:10:32 am »
You can look at
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

alabamajane

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Re: Your Synkinesis Experience
« Reply #5 on: December 17, 2013, 05:18:37 am »
The ANA just presented a great webinar by Jackie Diels, very well known therapist in facial retraining methods,,you can now access it from the home page if you are a member of ANA and have a user name /password for the member section.. I attended the webinar in Nov. when presented and it was wonderful, very informative material.

She has a power point presentation in addition to lecture info and shows how the facial muscles and nerves interact along with some basic Q & A at the end..

I think it would be helpful to anyone dealing with facial paralysis  and recovery. One thing I will say, it takes vast amounts of patience and time for this part of recovery,, there is NO rushing nerve regeneration ,,,I found gentle massage and small attempts at movement for first 6-12 months was best for me.. I was told 12-18 months for regeneration and found that to be on target.. I am just over 2yrs in recovery and still seeing changes..I had gold weight in eyelid for first two yrs and had it taken out last Oct,, I have mild synkinesis but manageable for the most part,, good luck to you,, just be patient and don't force any exaggerated movements ,, ,, my non-medical advice,, for what's its worth  :-\
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

millie

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Re: Your Synkinesis Experience
« Reply #6 on: December 19, 2013, 06:45:28 pm »
Kristena-I feel the same as you about so many things, but we must keep hopeful and proactive in seeing doctors and therapists……  I have had botox twice; I go back to the plastic surgeon early January.  Truthfullly, the tightness lately makes me crazier than not hearing and head fullness.  I too have been a little lax about doing my exercises and other issues in my life have come up so I haven't seen my facial therapist in several months although I did have my implant for the BAHA.  I have some computer incompetency so I have had trouble accessing the Jackie  Diehls webinar but as soon as Christmas is over, I am tackling that problem.
Meanwhile, I massage my face and do some exercises but stress and being tired definitely affect it.  I believe that since I am better than I was after surgery I will continue to improve. Yes…mind over matter!
Merry Christmas, Mil

Kristena

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Re: Your Synkinesis Experience
« Reply #7 on: December 21, 2013, 08:56:08 am »
Thanks all for your insight. I'm not an ANA member, but I may have to look into that and David's book. I've been so busy at work, and of course with all the holiday planning, I haven't really taken the time to concentrate on myself other than the 2x daily facial stretching. But I have the next two weeks off(!), and I plan to spend a lot more time relaxing with warm, wet rags, doing massage and yoga, etc. But some of it I just can't avoid--like licking my lips, or drinking water. My eye gets really squinty, and I've developed crows feet all around the outside. I will do what I can, and the rest I'll just have to accept!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

spgreenfield

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Re: Your Synkinesis Experience
« Reply #8 on: February 01, 2014, 10:34:06 pm »
I'm one of those annoying success stories...very little paralysis post surgery and rather quick healing, but I, too am stuck with the eye-closing thing when I smile.  I'm working on it though as I can't afford the chunk of change it would cost to have an appointment with Jackie...

But I HAVE come up with something that's helped me a bit with the "tightness" in my cheek though.  It's unorthodox but for me it's helping.  I dampen a wooden spoon (one of the more narrow ones) and insert it into my cheek with the rounded convex side facing out to my cheek - and push outward gently - also I can then "trap" my muscle and skin between the spoon and my fingers and "massage" my cheek pulling it toward my mouth against the direction of the muscle pull.  My cheek has an every so slight pull into a grimace sort of smile and it's bothered me.  You can't see it if you're looking straight on, but if you tilt your chin downward in a mirror and look DOWN on your mouth from above you can see how it's pulled back or not.  I found out the hard way to dampen the spoon, as it sucked all the saliva out of my cheek and I actually removed the top layer of skin onto the spoon!  EEEK!  It thankfully didn't hurt (I was pretty surprised at how few nerves must be inside our cheeks....)  But if it helps anyone else - have at my spoon method!!!

Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

saralynn143

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Re: Your Synkinesis Experience
« Reply #9 on: February 02, 2014, 01:04:55 pm »
My eyes are OK. I have a lopsided but decent smile. Huge chin dimple though.
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

Cheryl R

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Re: Your Synkinesis Experience
« Reply #10 on: February 02, 2014, 10:01:01 pm »
Jackie has people do something similar by using ones clean thumb for inside the check and then the fingers for the outside face area and pull together on an tight area 10 times.    Then go to another area and do the same till areas which need it are done.      She also says to use warm packs on the tight areas.                        Being out in the cold does not help this time of year too.
                                                                  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

spgreenfield

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Re: Your Synkinesis Experience
« Reply #11 on: February 03, 2014, 08:24:02 am »
Jackie has people do something similar by using ones clean thumb for inside the check and then the fingers for the outside face area and pull together on an tight area 10 times.    Then go to another area and do the same till areas which need it are done.      She also says to use warm packs on the tight areas.                        Being out in the cold does not help this time of year too.
                                                                  Cheryl R

That's where I got this idea - I felt if I could get a better "grip" on the muscle I'd be able to work it more.  The wooden spoon gives me that ability.  I also noticed that the inside of my cheek would get sore if I massaged it against my teeth, and the spoon protects against that problem as well.

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

alabamajane

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Re: Your Synkinesis Experience
« Reply #12 on: February 03, 2014, 04:27:50 pm »
Pam,
Love the spoon idea!! :P I am going to try it and see if it will be successful for me also in relieving the occasional tightness...clever idea,, I have used my fingers and massaged my cheek over the years but this sounds much more entertaining !  :P thanks and you look mahhhvelous from your photo,, maybe I can acquire as pretty a smile too!!! ( and the baby is a doll also !)
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

spgreenfield

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Re: Your Synkinesis Experience
« Reply #13 on: February 03, 2014, 07:22:35 pm »
Alabamajane -

You made me realize it's been over a year since I put that photo up!  Needed to update it!  This new baby is my oldest daughter...and this was taken at the airport at -9 degrees!  And my face wasn't frozen!  LOL!  My grandbaby is so much older now!  I'll have to try and find a photo I can share of the 2 of us....

Hope the spoon works for you as it did for me - gave me some leverage to pull out the tightness....but if those muscles keep pulling it in, you'll be doing it all the time.  I'm working on NOT pulling muscles I don't need to pull...but it's hard to do!  I remember when the smile wasn't working but I was "feeling" the beginnings of muscles working....never looking in a mirror, just remembering how it felt to do it right.

Pam

Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

alabamajane

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Re: Your Synkinesis Experience
« Reply #14 on: February 03, 2014, 10:24:08 pm »
Looks good and very hard to tell affected side,, even in freezing temps! Lol

I think the take away here for Kristena and others is that it does take time, patience and gentle movements,, in my opinion,, for what it's worth,,, I don't look in the mirror much either,, prefer to think about what I want my face to do,, like was said,, mind over matter ,, will it to move,, I believe too much early intervention is more harmful and can cause more synkinesis  than letting nerve heal and gently "coaxing" it back,,,like you said just try to remember what you want it to do ,, ,best of luck to all of us ,,stay warm!!
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

 


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