Author Topic: What did you do to regain movement?  (Read 4932 times)

Heresrose

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What did you do to regain movement?
« on: February 02, 2012, 01:45:50 am »
For those whose facial nerve is intact, developed Bell's pasley, and have regained movement, what if anything did you do to get movement back in your face?


Rose
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

mandy721

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Re: What did you do to regain movement?
« Reply #1 on: February 02, 2012, 03:28:48 pm »
Hi Rose,
The best answer is time.  Nerves regenerate very slowly and it can take many months to see the smallest signs of healing.  Over the past 2 1/2 years Ken's facial movement has improved dramatically.  Some people see noticeable progress more quickly, but it took many months before there was any sign of healing.  At nine months, his surgeon suggested we see a plastic surgeon to explore facial reanimation options, but Ken didn't want to consider surgery. From reading this board, we learned about the wonderful Jackie Diels @ the University of Wisconsin Medical Center.  We were in contact with her for about year before she thought Ken was ready to work with her.  I know how hard it was and is for Ken to deal with his facial issues and it is hard to think about how slowly the drive regenerates, but it does.  Patience is hard to come by, but it is one of the most important abilities to have in dealing with this recovery. 
Healing thoughts and good wishes,
Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

HeidiC

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Re: What did you do to regain movement?
« Reply #2 on: February 03, 2012, 05:52:11 pm »
I had full facial movement after the surgery, but over the next week or so as the swelling went up I ened up with almost total paralysis on my AN side.

I started physical therapy about 6 weeks after the surgery(surgery was Oct 6, 2011), I would have started earlier but the insurance wasn't cooperating.  At that point, I did have some movement back, maybe at about 50%.  My physical therapist gave me exercises to do.  And she also stimulated my face with some sort of muscle stimulator.  I'm sorry, I don't know the name of it but basically it sent a little shock into the muscle and made it jump.  The stimulator had a noticable effect almost immediately.  I was discharged from physical therapy about 3 weeks ago and have very little paralysis left-if you didn't know I had it then you wouldn't notice.  I am sure the swelling has gone down and that certainly helps, but it didn't hurt to try the simulator and it helped as well.  It did hurt some-not terrible, but it is adjustable and you can ask them to turn it down.

~Heidi
Diagnosed 6-24-11 left side AN 3mm x 3mm
33 years old at time of diagnosis
Mid Fossia surgery 10-06-2011
with Drs Adunka and Ewend at UNC.

saralynn143

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Re: What did you do to regain movement?
« Reply #3 on: February 03, 2012, 07:07:46 pm »
Keep in mind that there is a difference between immediate post-op paralysis and delayed onset paralysis.

Like you, Rose, I woke up with paralysis. I saw a facial nerve specialist about 8 weeks post-op. He told me not to do anything, especially try to force movement, for a year. That would allow the facial nerve to regenerate with the least possibility of crossed signals. At that time we would look into facial physical therapy. I followed his advice and after three and a half years have significant recovery.

Wishing you all the best.
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

spgreenfield

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Re: What did you do to regain movement?
« Reply #4 on: February 04, 2012, 01:48:05 pm »
Having had slight facial weakness prior to surgery I was very disappointed to have a LOT more post surgery.  My sensation was back (mostly meaning I could actually FEEL my teeth and some of my face and my eye a little but blinking was almost non-existant) but movement was minimal on the AN side.  I researched and found therapy mentioned, and totally contrary to my surgeon's wishes the opinion was to not FORCE movement - even to the point of Jackie Diels NOT recommending electric stimulation of any kind.  I am blessed though.  My "giant" AN (as it was referred to in the surgical notes) came out in half the time they expected it to - nearly total removal, and supposedly no nerves were cut.  I am SSD for now - still HOPING that I may get surprised later on during the healing process, but for now, this is my new normal.  What I did was compile all the advice into my own interpretation.  Maybe it will help - maybe not.  What I saw about people forcing movement and then getting weird unnatural movement in return made a whole lot of sense to me.  Using a mirror all the time did not.  Personally, I think your muscles have got to have some sort of memory.  So what my face naturally attempted to do when I would THINK I was responding to something would be my goal.  Looking through all the printed material from my surgeon - raising eyebrows, flaring nostrils, snarling and on and on were all expressions I knew well HOW to do - it was just a matter of my facial muscles "awakening" enough to do them.  So with me, I started looking in a mirror but quickly stopped it when I realized that I could FEEL a movement long before the mirror would even reveal it.  The mirror helped me to isolate the muscle group I wanted to work and avoid having the surrounding muscles join in the movement - thereby connecting that movement together forever, which I didn't want to do.  So I can "practice" my movements anywhere - because I'm feeling them - not so much as seeing them.  I also had to PURPOSELY stop raising my good eyebrow so high all the time to prevent having to have an eyebrow lift later on.  (I could see on my nose bridge that my skin was already being pulled off center by the stronger more dominant eyebrow.)   The muscle movement at first feels like a "flutter" and not what you would think it would feel like.  But gently working it - keeping the group isolated and double checking in a mirror is what helped me.  BUT my nerve was obviously not severely damaged.  It's been nearly 4 weeks since my surgery and all I can do is a symmetrical closed mouth curve smile.  But other movement is coming.  I can now drink out of a REAL glass without dribbling (sipping like it's a hot beverage works best) and I am told my words are clearer and clearer each day.  I will welcome losing the feeling of cold and stiff on the AN side if it ever happens....but for now I am satisfied.

I wish you complete healing of those nerves that control it all!!!

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

LADavid

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Re: What did you do to regain movement?
« Reply #5 on: February 12, 2012, 08:52:37 pm »
I'd like to reiterate what Sara said.  Nerves regenerate naturally.  I got twitches at three months post-op and began exagerated facial movements that I thought would help.  It didn't.  It confused my nerves and I acquired synkinesis from it.  I believe now that if I had let things heal naturally, I would be fine today.
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