Author Topic: Facial paralysis- suggestions?  (Read 4960 times)

dslifer

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Facial paralysis- suggestions?
« on: May 29, 2014, 07:16:08 pm »
Hi everyone! I am 3 months post-op translab for a 3cm tumor. It was pressing on my brain stem and actually grew into my facial nerve. Although my facial nerve was left intact, I developed a complete facial palsy on the AN/ right side of face. I am receiving a gold weight in my eyelid in a few weeks. Here is my question, What should I be doing for my face? The doctors told me to wait and be patient. Are there some specific exercises I should be doing and/or other treatments? Thanks!
« Last Edit: May 30, 2014, 08:26:22 am by dslifer »
3cm AC tumor diagnosed 1/14
Translab to remove tumor Dr. Chamoun/ Dr. Lin (KU med) 2/28/14
Right side facial paralysis/ SSD with tinnitus

saralynn143

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Re: Facial paralysis- suggestions?
« Reply #1 on: May 30, 2014, 04:29:06 am »
Your doctors are right. Time is your best friend. My doctor forbade anything for a full year. He explained that trying to force movement earlier would increase synkenesis. I think he was right. After almost six years, I have regained probably 70% of facial function and have the chin dimple but none of the peskier movements like my eye closing while eating or smiling.

Any chance you can move up the eyelid weight surgery? It makes a huge difference, but don't expect a complete blink. The two basic benefits are closure during sleep and keeping the eyelid from retracting too much.

Best of wishes to you. Three months was when I noticed the first tiny movement at the side of my nose.

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

Hokiegal

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Re: Facial paralysis- suggestions?
« Reply #2 on: June 01, 2014, 05:37:39 am »
My tumor was very similar to yours, with a similar outcome.  In my case, the facial nerve was nicked, resulting in paralysis on the right side.  My doctors gave me a list of about twelve facial exercises to do twice daily, that consisted of simple facial movements like smiling and frowning.  The idea is that, even though the AN side is not moving the non-AN side is sending signals that help in remapping nerve function.  I did these exercises religiously.

I also began seeing an excellent speech therapist after about six weeks, and she stressed the importance of frequently massaging the paralyzed facial muscles so that they do not atrophy. She also started taping my face to lift my brow and mouth into correct position, a technique used in sports medicine to help the muscles "remember" where they are supposed to be as the nerve slowly regenerates.  She also used Vital-Stim (not a TINS!) on both sides if my face, and that is when we really started seeing results.  I felt the first muscle contraction after a few weeks, and things progressed slowly from there.  My eye started producing tears -- intermittently at first -- after about six months, and at eleven months I was able to close my eyelid completely. 

I had regained most of my facial function by the end of the first year, with very little syskenesis.  My eye function is critical to my ability to do my job, and in my opinion, my speech therapist's efforts are the reason I was able to keep my job.  Otherwise, I would have been forced out on disability after one year.  I still do my facial exercises, and massage my face -- it's become a habit by now.  And after two plus years, I continue to see improvement.

I never had to get an eyelid weight, and I do not have to take Botox injections.  I consider myself very fortunate to have found an excellent therapist. 

You will see that there are different schools of thought on this subject.  This is my story.  I encourage you to seek out as many opinions as you can, and I wish you all the best in your recovery.

Mary
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

lifeisgood

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Re: Facial paralysis- suggestions?
« Reply #3 on: June 04, 2014, 06:48:17 pm »
I agree with wait. I would then see a facial retrainer if you need to in a year. I saw Jackie Diels in Wisconsin. You can search the site and her info will come up.
I did movement exercises before the 6 months. Since I did them so infrequently I don't think it caused the synkinesis . I have a really expressive face and I think that it just happened anyway. 
Everyone is different.
I am 10 years out now. Am I still self conscious? Yes.  But that is just me.

The tumor was very involved with the AN but they got it all out.  Clean MRIs for 10 years.  That was so important to me that the residual effects really aren't a great deal. 

Best to you!
Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

dslifer

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Re: Facial paralysis- suggestions?
« Reply #4 on: June 05, 2014, 08:37:50 am »
Thank-you everyone for your suggestions. I will meet with a neurologist in July for my palsy. I will be interested to see what he has to say. For those of you that had an eye weight. What can I expect? I am having that done on June 16th. My daughter's wedding is July 12th. I'm assuming everything will be healed by then?
3cm AC tumor diagnosed 1/14
Translab to remove tumor Dr. Chamoun/ Dr. Lin (KU med) 2/28/14
Right side facial paralysis/ SSD with tinnitus

saralynn143

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Re: Facial paralysis- suggestions?
« Reply #5 on: June 05, 2014, 11:17:08 am »
The eye weight is not a huge thing. I wrote about my experience in my MVD diary - it's at http://www.hfs-assn.org/diarylinks/shartman-mvd.htm - do a search for August 11, 2008 and you'll find it.

My best advice is to keep your eye iced afterwards. It will keep the swelling and bruising to a minimum. I bruise easily but did not have any after the eyelid surgery.

I think you will be fine for your daughter's wedding. Have a great time!
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

mattp

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Re: Facial paralysis- suggestions?
« Reply #6 on: July 20, 2014, 10:42:51 pm »
I had a gold weight inserted after my facial schwannoma was removed. It's fantastic, highly recommend it. It just sits there and helps you close your eye.

As far as re-amination, if you have no movement after a year, I would suggest visiting a plastic surgeon. Nerve transfers are a great way of regaining some movement, which I have achieved after two additional surgeries.

Good luck!
May 2011 - Diagnosed with 5cm+ AN
June 2011 - Surgery performed, 5cm+ FN discovered. Tumor de-bulked, nerve preserved. Facial weakness post-op approx. HB 4, recovered to HB 2.
November 2012 - MRI shows significant growth of tumor.
March 2013 - Tumor completely removed. Complete facial paralysis LHS.