ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: nancyann on May 10, 2007, 04:32:41 am
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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
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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
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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
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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
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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
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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
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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.
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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.....
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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.
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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
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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.
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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
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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
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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
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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.
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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
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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.
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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.
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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.
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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
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super super news and so happy for you....
:)
Windsong
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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!
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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
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THANKS EVERYBODY !!!!!
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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.
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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