ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Cheryl R on August 18, 2009, 06:41:29 pm
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I am now confused with how long one is to wait to see a facial therapist. Jackie has previously said to wait till a year and this weekend it was 10 months to a year. When there is movement. How did others take this? Early therapy isn't going to make the nerve heal any faster. That just takes the slow time on its own. This can change how I have posted in the past. I hope to hear more as know there were several in the Fri eve session and the afternoon one.
Cheryl R
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My facial nerve specialist dude at Wash U said nothing until after a year. That included self exercises and physical therapy. He was adamant.
Sara
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Hi, since synkinesis usually begins between 3-9 months post-onset of facial palsy (fp), if you wait a year before beginning facial NMR or exercise you are 1) missing the opportunity to minimize it before it gets worse and 2) allowing the synkinesis patterns to become well-worn cortical pathways in the brain that are harder then to "untrain". In the chapter I wrote on facial NMR for Mark May & Barry Schaitkin's book, The Facial Nerve, May's 2nd Edition, there is a table (16-1) about criteria for when to begin NMR. Under the condition where there is evidence of synkinesis development, it states "Begin". Why? "Synkinesis indicates aberrant facial nerve regeneration which can be improved with facial NMR." The time-frame for this is irrelevant.
Now if you are one who never gets synkinesis, then this doesn't apply. That also means that you are likely full recovered within 4-6 months (in mild cases), OR you have remained flaccid due to no facial nerve regeneration, in which case facial NMR and exercise wouldn't help anyway. There were excellent presentations by facial plastic surgeons at the Conference about how to address the latter problem.
Let me know if any of this doesn't make sense.
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Hi Todd, I saw you at the symposium but was wondering more since DHM told Darlene she can see a therapist but she is only around 6 weeks post op. I was thinking more that DHM understood something I had missed. Actually I sat at the same table with you for supper Fri eve but never talked much as the roar of the crowd didn't help. So this doesn't pertain to me but the new ones who feel they need to see a therapist right away and also some drs views on it. Many newbies do do understand the synkinesis and what it is as compared to just paralysis. So good way of putting it.
Cheryl R
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Sorry for the highjack LOVE the new photo Sara!
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Doesn't she look great? You can't even tell she has ANY facial problems...
K
PS - I was the photographer - have to get my claim to fame in! I am keeping track of how many people use photos I took as profile pics - my SIL's have used a number on FB...
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Folks ~
Please try to keep your posts here on topic. We have lots of 'photo' threads going in the AN Community forum. Feel free to post all photo-related messages there. Thanks.
Jim
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Hi Cheryl-
I always understood that you could start NMR when you started to get some movement back. The caveat (according to my doctors) is that you have to be careful not to over-work the muscles. There seems to be a lot of disagreement about this within the medical community, which causes a lot of confusion for all of us with facial palsy. :P
(BTW, it was great meeting you at the symposium!)
Debbi
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Hi Cheryl, I do remember you as well (the photo helps!). It was pretty loud in that room, and since I wear hearing aids in both ears due to hearing loss, had a hard time following conversations, too.
I agree with what Debbi said. It is very natural, when you do start trying to exercise your face, to push strongly. After all, the harder I push the stronger I'll get, right? Wrong. The face is a very finely coordinated machine, and doing small movements, as Jackie D. said, is the way to go. I always tell patient to go for symmetry. For example, winking one eye, or trying to, is always bad because it usaully causes a lot of facial muscles on the winking side to contract together and cause distortion. The best way to relearn eye close is to look down and close with both eyes.
Take care,
Todd
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Hi Todd, I saw you at the symposium but was wondering more since DHM told Darlene she can see a therapist but she is only around 6 weeks post op. I was thinking more that DHM understood something I had missed.
HUH? :-\ ???
I am not sure I know who Darlene is. :-\
I would not tell a 6 week post op patient to go for therapy. The rule is you wait for movement to return however if you are seeing obvious signs of sykenisis it is my understanding that you want to get onto this ASAP. As soon as I noticed my eye closing, when I pursed my lips, I was in to see my oculo-plastics dr to see if we could locate a therapist (Finding my therapist is a whole different off-topic story)
Is it possible you misheard me- or I misheard this Darlene. (Who is Darlene?)
Mis- hearing is so possible with us SSD folks... get more than one if us in a room and yup we can get our information confused.
DHM
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DHM, I think Cheryl was referring to this post:
http://anausa.org/forum/index.php?topic=10300.msg118545#msg118545
Steve
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Ok – thanks Steve.
Darlene (now I remember who this is) says her surgery was 12/6/08 on her signature.
Her post was Aug 17, 2009
That would have her at 7 months.
She mentions 6 week re-check… but I did not read this as post op.
I was worried that she would go to any physio therapy with a placid face and have damage done- thus I suggested she contact Jackie.
Yup I think the misunderstanding was that Cheryl- you read this a 6 weeks post op.
Easy to see the confusion there… I did not think I sent a 6 week post op patient to seek help …
Keep moving forward and asking questions. That is why we are here.
DHM
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I just looked at Darlenes profile and she was dx in Dec 08 and she says in a post that her surgery was July 1. I read her last posts so anyway I am not trying to make a big deal of this but do want know what we should be saying to a new facial paraylsis when it is just that someone thinks they can bring back the face on their own and don't understand how the nerve needs to heal first.
Cheryl R
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"... know what we should be saying to a new facial paraylsis when it is just that someone thinks they can bring back the face on their own and don't understand how the nerve needs to heal first."
Yup there was definitely confusion there... and you make an excellent point.
DHM
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Here's my addition to the confusion. I am at nine months and my face started to move at 7 months. My eyebrow started moving this week which really surprised me. I do see what I think is synkinesis because whenever I do any movement, the muscles under my eye move upward.
At the conference, I asked Jackie when I should start and she said now would be good. So I think therapy timing is defitely based on movement and synkinesis, not a time frame.
I have been doing exercises daily since movement started. But I need to remember the point about small movements instead of large. I have a tendancy to try to push it a bit farther than it wants to be. I will try to be more careful. Something DHM said on another post really struck me - to think of your facial nerves as butterfly wings - treat with gentleness.
Samantha
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Samantha, you missed the Fri eve session there with the headache. The group noise is hard to take and I always end up with worse tinnitis. That was really a good one as Jackie showed what should be done on some people depending on their time of paralysis. This was the first year they have had the Fri eve session done this way and I hope it continues. I do know someone else who went to another type of one learned nothing so we were lucky. I hope you keep doing well. You are looking good. It is no fun when we know there are still problems and not seen as much as early on.
I was glad to get to meet you. Cheryl R
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Yea, not to side track this into a hearing discussion, but the noise at Friday dinner was way over the tolerable level for my head (side track to headaches ;) I didn't know Jackie was going to talk or I would have stuck it out a bit longer. Trying to laugh instead of cry, there is something a bit humorous about a room full of SSD people trying to talk to each other ;)
It was a very informative symposium. I'm glad I went. Nice to meet you, too, Cheryl!
Samantha
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Hey Samantha-
My hubby and I were sitting to your right at the Fri dinner - and you are right, it was so noisy that it was impossible to talk. Sorry we did not get a chance to talk a bit. We left right after you did - just too much noise and commotion.
Debbi
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My understanding from what Jackie said was that you need to wait until you see the crease from your nose to the corner of your mouth before starting therapy? That would be a sign there is some nerve action starting. ???
Denise
(And it was nice to meet you Cheryl. I didn't make the connection when we met at the Midwest lunch table that you had already corresponded with me.)
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I always tell patient to go for symmetry. For example, winking one eye, or trying to, is always bad because it usaully causes a lot of facial muscles on the winking side to contract together and cause distortion. The best way to relearn eye close is to look down and close with both eyes.
Todd,
Thank you for reminding me about closing of the eye. Dr. Rubenstein who did my 12/7 transposition was so excited to see some synkenesis when I squeezed my left eye shut. ???There was movement in my left upper lip (which is flaccid). So yes, there is some nerve/muscle connection going on ,though the wrong way. This is 18 months post 12/7 transposition, 3 years post AN surgery.
I'm discouraged with his plan.....come back in six months.
I do have muscle movement in some areas of the face, but not around lip/cheek area. Kind of looks sunk in. He doesn't want to do any additional surgery at the moment, but I will look into plastic surgery after the holidays if he still wants to "watch."
I'm confused about what kind of exercises to do. Docs don't say anything. I'm trying acupuncture in a week to see if that will help with movement, since there is nerve innervation now.
I've had some facial massage therapy also. No Neuro muscular facial training per se.
I'm military (tri care) so the options are more limited.
Any insight? ideas?
Thanks,
Maureen