Survey of Facial Paralysis

[marg]

Hi Nancy,
    A friend of mine had his facial nerve removed  2 years ago because his tumor totally surrounded it .  He later had a nerve  replace his facial nerve and is much better now (his eye works although he only has a 1/2 smile). He and his wife have been a wonderful support to me during my own pre and post surgery days.  I hope you can get the help you need.... I'll be praying for you.

     As for me... my tumor had to be scraped off the facial nerve and although I can feel the surface of the left side of my face.... my eye only closes about 1/4 th of the way.  It does however have some moisture in it  now...just in the last 1 1/2 weeks (although I can't cry on that side) so I don't have to put as many drops in during the day although I do use gel at night.  My friend told me to use B-12 daily because it is a support for nerves.  He said his facial nerve got better after he started using the B-12.  I use a B-12 that goes under the tongue to desolve... it is called B-12Dots (500 mcg).  My husband says he sees some small changes in my face every few days... and now my whole bottom lip works too.  Anyway, I just wanted to share this information ... might be helpful. 
Margaret

[nancyann]

Karen & Margaret:  Thank you so much for your kind words & info.  Karen:  you had me laughing there at the end when you wrote 'I pray your suffering will soon be over' - I couldn't help thinking 'what now, they're gonna take me out back & shoot me?'  Thanks again guys, I LOVE the support all of you have shown me.   B12 dots,  hmmmm - I'll check this out.

[chrissmom]

Hi Nancy,
I wanted to give you an update on Chris.  As you know, he had the jump graft surgery at the end of October.  The anastomosis has kicked in slightly but the real good news is that so is his own facial nerve!  We are going to the Facial Nerve Center in Pittsburgh and visiting with a Facial Nerve Specialist, Todd Henkleman.  Pembo goes there too.  Chris is really coming along.  We are starting to see some movement on his right side.

They actually hook him up to a computer and you can see the improvement right on the screen each time.  Now, the interesting thing is that he is able to raise his right eyebrow.  That is not from the anastomosis so his own facial nerve (which was stretched and flattened by the tumor) is regenerating too!  It's exciting.

The whole thing is amazing.  It's slow but truly amazing.

[nancyann]

Rita: WOW!,  great news about Chris - give him my regards.  How long ago did he have the jump?   Well, Dr. Telischi did some checking of my chin/lip area, & he's deciding to wait on the 12/7 jump.  He thinks he saw a little movement, so he called in 2 more surgeons.  (The one who also did his training at House did the checks the same as Dr. T - 1 saw movement, 1 didn't), since there was the slightest improvement on my EMG, he wants another one in 2 months, so it's 'watch & wait' mode for me.   So, good news all around.   ps.  I personally don't see ANY movement, but the docs held down my lips on the left side & had me 'pucker', that's when they saw it - nothing a layperson would see because I don't see it, but I'll take any good news I can.

[Jeanlea]

Hey Nancy, great news that a doctor saw movement in your face.  Hopefully you will be able to see it soon, too.

Rita:  So happy to hear that Chris is getting some movement back.  The facial retraining should help more of it come back.

Jean

[Windsong]

super super news and so happy for you....

 
Windsong

[Omaschwannoma]

Good news for you Nancy.  Hang in there as you are being asked for more patience to help you through these two months.  We're here too! 

[marg]

Nancy,  It's great they saw something.  I'm glad they are going to check again in 2 months (althought that is a long time to wait). 
Margaret

[nancyann]

THANKS EVERYBODY !!!!!

[chrissmom]

Nancy,

You might want to ask if they have the Synergy Software Module that is used at the Facial Nerve Center here.  We can detect even the slightest movement.  Believe me, sometimes it is very slight.  But...it is sooooo good to see !  You can actually see the impulse on the screen.  The other side of the face shows up green and the paralyzed side shows up red.  You see an image like a graph.  It is a continuous reading, something like an EKG only for the face.

I'm so glad you have some movement...even if it is slight.  They claim it regenerates almost a cm a month.  Hang in there.

[marg]

Does anyone know.... Is there a place in Washington State... or Oregon that has a facial nerve center that really is a good place to go for help with facial paralysis?  Just wondering.  I see my neurosurgeon on Wed. (surgery follow up) and I want to ask him about therapy help.   Thanks,
Margaret