Survey of Facial Paralysis

[nancyann]

Hi Gang:  I have been wondering about this & hope those of you with facial paralysis will join in.  I'd like to know from those who have/have had facial paralysis: how was it caused, what was done, how is it now & what you are doing to assist with healing.  I would say for myself:

facial nerve cut 6/19/06 with end to end facial nerve anastamosis at time of surgery;   Get routine facial EMGs, last showed 10-15% nerve generation but still no movement.    Going for acupuncture since 10/06.

I appreciate all who volunteer for this 'informal' survey.    Thanks,  Nancy

[Jeanlea]

Interesting survey.

My facial paralysis was caused from having my facial nerve stretched.  It was intact after surgery. 9/6/05  I am letting it come back on it's own.  It's gone from absolutely no movement to my now being able to make a small smile.  In June I will be going to see Carrie Loth, a facial retraining person who studied with Jackie Diehls.  No EMG's yet.

Jean

[nancyann]

Hi Jean:  Thank you for the input.   I was thinking 'once again I'm in the familiar mode of (as people have told me)"no Nancy, just YOU are interested in this"'  lol
I was interested especially re: facial nerve being cut vs. stretched -from what I've read on the site it seems those that were stretched are more likely to get movement back, even if it takes awhile (which makes sense, it's not rocket science to figure THAT out - duh Nancy).  I'm curious, since mine was cut, how many others with cut nerve HAVE gotten movement back.   Oh well,  we'll see if others respond (or not, geuss I can be a bit morbid at times).
Take care Jean,  always good thoughts,  Nancy

[1wareagle]

Hi Nancy & Jean,

My surgery was only 4 1/2 months ago but my nerve was not cut. Dr. Brackman told me he had to leave a sliver of the tumor on the face nerve to preserve it. He said to be expecting movement in the next 2 mts but as of today I have had no movements not even a twitch. I still can't blink my eye but the weight help to close it at night. I watch both of your progresses and I'm trying not to get to inpatient.

Ellis

[Jeanlea]

Ellis,

The first movements are very small, almost imperceptable.  At least that's how mine was.  I got the tiniest movement next to my nose.  Isn't learning patience so much fun?  lol

Jean

[stewie]

Hi nancy,
My facial paralysis was caused during surgery because the nerve was so stretched. I'm approaching 18 months out and am able to make a closed mouthed smile. I get a whole "cheek apple". I noticed the faintest of movement last October. It was almost like a flicker in my cheek. Very, very tiny. I too see Carrie Loth. I met with her last week. My movement has doubled since she saw me last September. No eye blink yet--but Carrie noticed some movement on on the release of pulling my eyebrows together. Again, almost invisible.
Hope I was helpful.
Kathy

[amymeri]

Surgery 13 months ago.  Facial nerve intact for 2 days after surgery then went out.  I also have some numbness.  Nothing for 4 months then some improvement.  Has been slow.

I can mostly close my eye, can grimace but can't close my mouth all the way.  Can smile about halfway.  I am having facial retraining and botox.

[nancyann]

Thank you all.    So, it looks like 4 with nerves stretched or just the trauma from the tumor,   1 with nerve cut.   The stretched nerves do recover with time.   The cut nerve (me),well,  still waiting.....

[Pembo]

Another facial nerve stretched to like linguine the doc said. I had no movement right after surgery, 3 years later, it's better but not perfect. I saw Todd Henkelmann in Pittsburgh last summer and fall and saw a lot of improvement in 5 months. Unfortunately I haven't been back since November.

[Kathleen_Mc]

Nancyann: the difference of how much recovery you will get is if the nerve was cut or not. If the nerve was cut it is not longer able to do the job and you will not get  movement in that area of the face, you will get synkesis but not purposeful movement without repairs. (movement in reaction to movement  by the other nerves close by, often a tensing type movement).
If it was not cut but streached or traumatised it will return to some level of it's previous function and in time some report return to normal.
at least that is my experience from personal point of view and reading
Kathleen

[ceeceek]

my two cents....just had surgery 4 weeks ago....have some facial paralysis....around my eye....upper lid..mostly near eyebrow and numbness around jawline.....
no nerves were cut..just aggrevated ...have lots of trigeminal nerve pain and vidian nerve pain..affects vision...no fun...
so far acupuncture helped alot...
muscles, not so great...pain alot better.
am hoping with more treatment nerve that activates eyebrow will heal better....droopy eye..not so great for pictures....
did you also have the nerve pain to go withthe paralysis?
Ceeceek

postie..almost..only had very small section removed via endoscopic transphenoidal approach..will go for ck soon..hope it does not make matter worse but dr S and Dr M assured me it would not.

[nancyann]

Hi Ceecee:  no nerve pain;  unfortunatly my recent EMG showed very little improvement, & only in the chin area.  Think I may need the 12/7 jump.  I go to my surgeon june 6th, geuss I'll find out then.  Take care, Nancy

[MikeC]

nancyann ... I had my surgeries 25 years ago. I reads like your outcome is much as mine was. In my view, the 7-12 splice was a true gift, as the left side of my face was sagging greatly ... no muscle tone left due to severed 7th nerve. The 7-12 restored most muscle tone on the left side ... if I avoid a smile, the effects are hardly noticeable ... the left eye brow is a giveaway, but who looks at peoples eyebrows. The smile, on the other hand, remains as it was 25 years ago    . My left eye scared over 25 years ago, there was no ANA then. 

Any negatives from the 7-12 .... hmmmmm ... I can only chew on the right side of my mouth ... my kids make fun of me when I stick out my tongue ... other than that, none come to mind.

Namasté

          Mike

[nancyann]

Mike:  Thanks so much for the encouraging words !   I see my doc tomorrow - I'll find out if he feels I should have the 12/7 jump.  How long after your initial AN surgery did you have the jump done?  Did they do a total or partial hypoglossi, & do you have any problems with synkenesis ?  I appreciate your help.    Nancy

[Omaschwannoma]

Hi Nancy,

Just want you to know I'll be thinking of you tomorrow and hoping all your news will be positive for you.  Every post of yours is very supportive and positive making those, I'm sure, feel comforted.  I am comforted by your posts and I'm not the one you're responding to!  All the best to you Nancy and I pray your suffering will soon be over.