Author Topic: facial paralysis not recovered. any suggestions ???  (Read 39517 times)

nimmy

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facial paralysis not recovered. any suggestions ???
« on: April 25, 2011, 09:26:17 pm »
I got Acoustic neuroma surgery nearly 2 years 3 months ago. I had partial facial paralysis on the side of Tumor operated. Till now it is not recovered completely. After my surgery I took 10 acupuncture sessions and 20 Physio therapy sessions
1)   My left eye lid is not closing completely & eye tears are not secreting.
2)   My left eyebrow is not moving, left side of lips and left side of face below the eye is also not moving.
Can anybody suggest me for any treatments what you took

saralynn143

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Re: facial paralysis not recovered. any suggestions ???
« Reply #1 on: April 26, 2011, 05:44:24 am »
How long ago was the acupuncture and physical therapy? You could try either or both of those approaches again.

What was your prognosis following surgery? Did you wake up from surgery with the weakness or did it happen later?

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

lauralynn

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Re: facial paralysis not recovered. any suggestions ???
« Reply #2 on: April 26, 2011, 02:23:58 pm »
Hi Nimmy,

I had my AN removed just 2 years ago.  What was the size of your AN and how long was your surgery?  I do daily facial exercises which were recommended by my neurosurgeon.  I had my surgery in April of 2009 and one day in August I was practicing smiling in the mirror and that is when I noticed the first movement in the corner of my mouth.  I was so excited!  I have more movement now but have a ways to go.  I also take pictures of myself (once a month) to look at my progress.  Other forms of exercise (jogging, treadmill, bike riding) will also stimulate those facial nerves.  PM me if you would like.  Keep in touch.

God Bless,

Laura Lynn
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

lifeisgood

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Re: facial paralysis not recovered. any suggestions ???
« Reply #3 on: April 27, 2011, 08:51:21 am »
Hi There
Be patient. :) I am 7 years post surgery. I can't believe how fast time flys.
I am still recovering. I don't care what they say but your faciial nerve will continue to regenerate
My issues was synkinesis about 8 months after surgery. I wrote an article about it in the ANA publication in 2005.
I went to see jackie Diels, facial retrainer in Wi.  I am going back to see her next month.  I have gotten botox which helps.
I haven't gotten it in 2 years .

Best to you.  I tried Acupuncture too. I am a massage therapist and believe facial massage is wonderful too. Visualization is a tool I use also.

I still don't have lines on my right side of my forehead BUT there is more movement this year than last. (Very slight)
You just need to really move slowly thru the exercises because other muscles will engage causing synkinesis.

Best to you !
Mary

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

nimmy

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Re: facial paralysis not recovered. any suggestions ???
« Reply #4 on: May 04, 2011, 09:29:46 am »
saralynn143 / Lauralynn/ lifeisgood :
my surgery was done on  November 2008. Now I got some movement. When I put my face without smile it looks ok , but when I smile, it looks ugly because of no symmetry. My left eye brow also static.
1 ½ year ago I took physio therapy and acupuncture. Now again  started acupuncture. Prognosis following surgery is complete hearing loss and partial facial paralysis. Wake up from surgery with the weakness.
My surgeon is Dr.brackmann of House ear clinic. Today I spoke to him for the possibilities of plastic surgery or “temporalis tendon transfer surgery” or any other surgeries. According to him , these surgeries for complete facial paralysis patients where facial nerve was completely not working.
He said he will refer one facial nerve recovery specialist in Wisconsin, I can contact her. After her consultation she may refer some body in NJ (where I live). lifeisgood mentioned “ jackie Diels, facial retainer in Wi.” In his/her post. I do not know brackmann is referring the same or different


Brewers7

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Re: facial paralysis not recovered. any suggestions ???
« Reply #5 on: May 04, 2011, 11:33:00 am »
Nimmy,
     Same boat here.  Surgery December 2008, significant facial weakness but some movement (can't blink, left eye does not tear).  I started going to a Jackie Diels' trainee a few months ago.  I will see a new Oto next week for a fresh opinion.  It seems like we are in the gray area as far as the reconstructive surgeries go, since we have some movement  Keep us posted.  Susan 
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

saralynn143

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Re: facial paralysis not recovered. any suggestions ???
« Reply #6 on: May 04, 2011, 07:11:08 pm »
nimmy - please visit this thread of Jeanlea's: http://www.anausa.org/smf/index.php?topic=7247.0

Scroll down about halfway on the first page to see her progress pictures over a few years, I think there is an update on the last page as well. Jeanlea is a classic example of slow and steady improvement.

I think more than likely that it would be Jackie Diehls that you would see in Wisconsin. It seems that everyone who has gone to see her has been more than happy to have done so. I would recommend going if you are able to.

I am approaching three years post surgery (for a different condition, but the outcome was facial paralysis). Though my smile is not as big as it used to be, most people would not notice anything wrong with me. Please keep in mind that people are looking at your eyes when you are talking one on one. We are much harder on ourselves than others are.

Take care,
Sara

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

nimmy

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Re: facial paralysis not recovered. any suggestions ???
« Reply #7 on: May 07, 2011, 07:58:57 pm »
All
http://www.anausa.org/smf/index.php?topic=7247.0. I saw this link .it is inspirable.
I started acupuncture again I took 3 sessions. i do not know because of acupuncture or by the time being, i could able to move the muscle adjacent to left side of nostril from past couple of days.

can any body suggest any machines for face massage. my hand and fingers are pain to do massage for my self
« Last Edit: May 07, 2011, 08:31:19 pm by nimmy »

rayden1

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Re: facial paralysis not recovered. any suggestions ???
« Reply #8 on: May 09, 2011, 03:10:22 pm »
Hi Nimmy

I used Neuro 4 machine under direction of physio

All it promised was to keep face toned while nerve recovering. That worked  recovery very slow for me definitely helped but  a 

bit tiresome effort required to get used to using it. P M me if you wish I have the device and could send it to you if you want to  try it
 

Ann x

Jessica000

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Re: facial paralysis not recovered. any suggestions ???
« Reply #9 on: May 10, 2011, 07:15:04 am »
Hi,

I am having the same kind of treatment too. Accupunture and physiotherapy. Have you been taking any nerve supplements?
Sometimes the exterior work we do have to be in sync with how our body can recover too. Give your body better nutrition to boost the healing.
Even if it doesn't help, it improves your health. So that there's nothing to lose :)

Stay strong!

nimmy

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Re: facial paralysis not recovered. any suggestions ???
« Reply #10 on: May 11, 2011, 08:40:49 am »
all/ rayden1,
thanks for your offer. i will check with physio therapist for the use of this. I saw the info. regadrding this in internet. it is electrical stimulator. actaully my surgeon suggested me not to use any electrical stimulator which will hider the recovery of nerve.

I am using some indian ayudvedic nerve supplements right now. my acupnctursit in NJ ( she is from china) . she also suggested some chinese supplemnst. but i did not use them yet. after i finish the stock of indian ayurvedic supplenst , i may try for them.

Pl. share experience with the suppliments

Thanks

mandy721

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Re: facial paralysis not recovered. any suggestions ???
« Reply #11 on: May 18, 2011, 09:28:00 pm »
saralynn143 / Lauralynn/ lifeisgood :
my surgery was done on  November 2008. Now I got some movement. When I put my face without smile it looks ok , but when I smile, it looks ugly because of no symmetry. My left eye brow also static.
1 ½ year ago I took physio therapy and acupuncture. Now again  started acupuncture. Prognosis following surgery is complete hearing loss and partial facial paralysis. Wake up from surgery with the weakness.
My surgeon is Dr.brackmann of House ear clinic. Today I spoke to him for the possibilities of plastic surgery or “temporalis tendon transfer surgery” or any other surgeries. According to him , these surgeries for complete facial paralysis patients where facial nerve was completely not working.
He said he will refer one facial nerve recovery specialist in Wisconsin, I can contact her. After her consultation she may refer some body in NJ (where I live). lifeisgood mentioned “ jackie Diels, facial retainer in Wi.” In his/her post. I do not know brackmann is referring the same or different,

Hi Nimmy,
Dr Brackmann is referring to Jackie Diels ay the University of Wisconsin Med Center.  She mentioned that The House Institute refers many patients to her.  Ken's facial involvement was very similar to yours - his right eye hasn't been closing completely since surgery 22 months ago, even with a weight implanted in the lid. The right side had very little movement and ached much of the time. Spending  2 1/2 days with Jackie Diel"s has been transformative.  Using a series of messages, stretches and facial exercises the potential for regaining normal movement is  real.  It  takes time and  commitment in  following  the program, but the results are worth.  Knowing what is possible for h it just with using your fingers, hands and brain.   I would urge you to contact Jackie Diels.  When we first contacted her in May last year, she asked Ken to send her photos of his face in different positions.  From the photos, she was able to tell us that the nerve was healing, but she wanted to wait for more before seeing him.
 

My husband just posted the following in response to Micca's thread. It includes contact information for Jackie Diels.  

I had a 3.1cm AN excised (retrosigmoid approach--type surgery) in August 2009.  Similarly, I have had a rough recovery.  Many similar symptoms.  Re:--your face:
If my experience is any guide, you should not expect any improvement at all in the first year or two.  It took 18 months for me to see a tiny bit of muscle movement.  Now,, almost two years later, I have a bit more.  Your AN was so large, I'm guessing it will also take many months (maybe years) for your facial nerves to heal along all along the length of the face (even if it is intact, the nerve covering must heal...and it heals VERY slowly).  And also keep in mind that---even after the nerves heal, you may have to work to reacquaint your brain with the specific muscles of the face--on the affected side.  You may want to contact Jackie Diels in Madison Wisconsin (University of Wisconsin Hospital).  She is a facial-rehabilitation / retraining therapist--(runs the UW Hospital's neuromuscular retraining clinic) and as far as I know--she is one-of-a-kind in the U.S.  She does miraculous things.  I couldn't find anyone in the New York City area who does she does.  I have started therapy with her, and I feel hope for the first time in two years.  Her email is:  jdiels@uwhealth.org.  After six weeks, I would not give up hope at all.



« Last Edit: May 19, 2011, 01:02:09 pm by Jim Scott »
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

Jessica000

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Re: facial paralysis not recovered. any suggestions ???
« Reply #12 on: June 01, 2011, 08:18:23 am »
Just to share some herbs I take...

Gota Kola
Lion mane mushroom capsules
Acetyl-L-carnitine.

I didn't take them all at the same time. There's always rest period.
Anyone who had tried these herbs can share some feedback too =)