ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Debbi on December 17, 2008, 04:01:03 pm
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Okay, for the last month or so, I've noticed that my lip on my AN side pulls up slightly. The good news is that when I smile, it looks really good - the bad news is that when my face is relaxed, my lip is pulled up and a liver of my teeth on that side shows. It also shows up when I talk without smiling. Does that make sense? Here's a picture. It doesn't look awful, but it is getting more pronounced. Has anyone else experienced this?
(http://i280.photobucket.com/albums/kk167/debifulco/1217Lip.jpg)
Also, when I am tired, I get a little dimple in my chin (and not the cute Kurt Douglas kind) - anyone else have that?
I am seeing Dr. Roland on Monday so will ask him as well, but sometimes you guys are really my best source.
Debbi, here's snarling at you, kid
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Debbi, Yes and Yes.
I had the dimple in my chin and that is synkinesis. They botoxed it once and it went away on me. Mine got pretty strong and hindered my ability to smile so the botox helped relax it. The upper lip thing. Mine still does that. Your therapist will give you exercises to relax that. The muscle is overactive. I know the look you are talking about. Looks like you are always giving a mean, dirty look. I still have it but it has lessened with the relaxation exercises.
Angie
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Debbi
I had the dimple in my chin thing too - at least until I had the 7-12 - now I have nothing at all in my chin. For now, anyway! My doctor did mention before I had decided to go ahead with the nerve jump that they could botox the chin to make the dimple go away. It's not a permanent fix and will probably need to be done again, but if you can do therapy to strengthen the correct muscles while the botox is making the incorrect muscles inactive, you can overcome the synkinesis.
But hey, look how far the snarling got Elvis! :D
Lori
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Hey Debbie
Check out Michelles thread two below (or at least it is now). You may have Synkinesis. But it is very treatable with success. I had a pronounced snarl for about four months but with PT it's only a sneer now. I'm shooting for a smirk soon. Seriously, things are getting much better.
David
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I've been smirking for many years - actually it's my preferred expression for most of what amuses me in life ;)
Debbie -
I really like Kirk Douglas, but I'm hoping this too shall pass for you. Let us know what Dr. Roland thinks.
David -
it's great to hear that things are getting better and that putting in time with the PT is paying off. Keep up the good work.
Jan
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I guess that once again, I just don't get it. What is the problem with a dimple in your chin? If you were born with dimples, are you going to Botox them away? I asked my friend & she said she hasn't even noticed that I have one - & she notices EVERYTHING (& would HONESTLY tell me)...Yes, I got one after the T3 but it is no big deal. I wonder if this is something that WE notice more than others?? ???
K
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Debbi,
Snarling or not, your progress has been amazing so far and overall your face has improved since the summer I have seen you. Hopefully, the nerve heals in a few more months and does not bother you anymore. Meanwhile, your progress and attitude are something to celebrate!
Eve
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Hi Kay,
The answer to your question about the dimple in the chin is not a cosmetic issue it is a function issue. It is caused by synkinesis and it is tugging of the muscles in the chin causing the dimpling. Mine was such a deep dimple that the muscle was tugging inward so hard that it hinders your ability to move your mouth. It yanked my mouth downward. The botox relaxed those chin muscles (dimpling) and now I have easier movement and I must say it is much more comfortable. The sykinesis can be very uncomfortable with tightening of the neck and chin muscles and find myself some days lying down with a heating pad on my face and neck to stop the spasms. The facial therapist looks for this dimpling effect in the chin and wants to treat it right away so that it doesn't get stronger preventing the other muscles from functioning to the best of their ability. Some days.....especially when the chin dimple was at its worst I felt like I had a charlie horse in my chin. Yes.....I must say I've always loved dimples.......I've always loved dimples in the cheeks and chin but this dimple is one that you DON'T want! It's uncomfortable.
Angie
Happy Holidays.
Dimple-less after botox and feeling better.
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Angie~
Thank you for explaining that! I figured out why I didn't get it...I have NO feeling on that side...kind of makes sense, huh?
K
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Hi,
Even with my facial weakness I have the dimple sometimes (though less often, yay) and pulling. (also less) I've heard many talk about Botox so that sounds good to me. If I ever get to that point I'm going to have them make a few other "adjustments" while they're there.
M
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The dimple comes and goes and doesn't worry me as much as the lip curl. That is definitely getting worse and is fairly noticable when I talk now. Whereas before that side of my mouth drooped down, it now pulls up higher than my "good" side. The muscle in my cheek feels tight and I have been using warm compresses to try to relax it, but it doesn't seem to do a lot of good - it does feel good though!
I am very anxious to see Dr. Roland on Monday and see what he has to say. I'm really not up for another adventure right now...
David, what kinds of exercises are you doing to banish the snarl?
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Hi Debbi,
Sorry to hear you're facing yet another hurdle andhope Dr. Roland wll have some good news/advice for you. It sounds like you've already gotten a lot here too. Please let us know what Dr. Roland has to say.
Wendy
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Hi Debbi
Some of the exercises are fairly easy to explain -- the others are a bit complicated since it had to be demonstrated by my PT to understand it. First, don't do any exagerrated face movements. Yawning of course can't be helped. Over stimulation of the muscles only encourages the wrong nerve messages.
There are two face movement exercises. The first is to say the word "when" and hold it on the "W". You'll probably feel un-natural pulling in your cheek. Hold that "W" for a minute and concentrate on relaxing those face muscles. Do that several times. Then form a small smile -- first by starting on the good side -- then match the smile on the AN side. My eyes are affected when I smile. So I hold the smile for a minute concentrating on relaxing the eye muscle. And repeat that. The Botox keeps the wrong movement from happening.
The next isn't as easy to explain. It's massaging the muscles on the insdie of your mouth with your good side thumb. This takes a PT to show you because they know what muscles need to relax. The massage is actually sqeezing hard with your thumb on the inside and your forefinger on the outside of your cheek starting at the top of the muscle. Then very slowly draw your thumb down over the muscle sqeezing all the way until you get to the corner of your mouth. Like I said, that really needs to be demonstrated. I do think though the face movement exercises are a good place to start.
Hope this helps. It has very slowly been helping me.
David
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Hi David thanks for passing on the information about the exercises, i remember todd on the bells palsy site taking about the exercise for the smile he said if you use your fingers to help raise the smile on the AN site the eyelid doesnt go up as much and hes right.
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Debbi, when did you start physical therapy? I'm curious because I am just a couple of months behind you, and my facial nerve doc has told me specifically not to do any exercises to avoid synkenesis, and I don't see him again until March.
Sara
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Hi All-
Backl from a visit to Dr. Roland, who said that this is NOT synkinesis, but is an overactive muscle in my cheek (he had a more technical term - "overactive" is my translation). Same thing with the occasional dimple in my chin. This is very good news, although I do need to find some exercises to try to relax the muscle in my cheek a bit. David, I am going to try what you are suggesting. Dr Roland also suggested gently massaging the muscle in my lower cheek.
One of the challenges where I am is that the nearest really good place for EMR is an overnight trip for me - or an unbearablly wrong day. Dr. Roland is pitching the powers that be at NYU Med Center (next week, actually) to start an EMR program. He wants to have someone go train with Jackie Diehl and then start a program here because there is such a need. I am supporting him 100% on that (not that I have any sway at NYU of course!)
Sara, I initially went to a "facial" therapist at Kessler Institute, but she was more of a speech therapist (who works with a lot of stroke patients) so I think the program she gave me was probably pretty mediocre. Not to say that it hasn't been helpful! Initially my speech was messed up and I have perfectly clear speech now and also, as you know, quite a lot of mid-range facial motion back. If you want to see the exercises I've been using, I saved them in a PDF and would be happy to email them to you if you'd like. Again, they are more geared to stroke patients, but there is some good stuff in there. Not as good as what you'd get with a NMR specialist but still helpful. I only saw the therapist at Kessler a couple of times - it seems like much of this is self-directed, unlike traditional PT.
This facial journey is certainly interesting - and quite frustrating at times. Not to mention slow! However, I can see so much improvement from six months ago (thanks, Eve!) that it encourages me - and I hope anyone who reads this finds some encouragement, too.
I am still seeking answers and appreciate any tips anyone is willing to share. And, David, thanks again for the specificity of your post - this is so helpful! And, of course, you are an inspiration when it comes to facial rehab!
Debbi
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Debbi,
I am just curious about the exercises you have been doing. Can you please e-mail me the PDF? Thanks in advance! By the way, which Kessler have you been to?
Eve
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Hi Debbi,
Earlier this month we had a Portland ANA meeting, arranged by DHM (aka 4), where Wanda Crook did a presentation on facial retraining. Here is the announcement DHM posted: http://anausa.org/forum/index.php?topic=7895.0
What caught my attention is that there is no program in Portland either - Wanda works out of San Diego. She and Dr. Ng, who is at the Casey Eye Institute here in Portland, have lined up a grant to develop a "virtual" patient consultation program. Using a high quality video connection, patients will get to consult with Wanda remotely.
So, if you can't get a program started at NYU right away, maybe they can start up a "virtual" program instead. There are apparently not very many qualified Neuromuscular Facial Retraining Specialists around - not yet, anyway.
By the way, I thought Wanda's presentation was very good, and offered some real hope. She is careful to distinguish successful retraining from a true cure, but the results speak very well for themselves.
Steve
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Steve, this is great info - thanks for posting it! And, you are right, NMFT's are few and far between. When you think about a city the size of NYC without one, it is actually pretty shocking. I am going to forward this info to Dr. Roland after the holidays to give him some "fuel for the fire." There is so little help for those of us with facial issues.
Thanks again to everyone who posted here. Eve, I just pm'd you - need your email address to send the facial exercise file. Am also happy to send it to anyone else who wants a copy - it's a PDF so very easy to email.
As always, I am in awe of this group - and deeply indebted to all of you.
Debbi
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Hi David thanks for passing on the information about the exercises, i remember todd on the bells palsy site talking about the exercise for the smile he said if you use your fingers to help raise the smile on the AN site the eyelid doesnt go up as much and hes right.
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So, this week I started to see some definite "inappropriate" facial movements. When I move the AN side of my mouth, a big dimple pops into my chin. Oops. When I try to blink, I can also feel my lip trying to curl. I have downloaded the exercises on the Bells Palsy website and have also talked to Dr. Roland who wants me to see a NMFR. The closest one is several hours drive from me, but I have put a call into them and am waiting for a call back for an appointment. Sigh. New year, new challenge. As always, I'll share whatever I learn.
Thanks...
Debbi ::)
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Hi Debbi,
Sorry you're having yet more challenges but your strength of character will see you through, that much is clear. And the only other thing I have to add is "oy".
M
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Hi Debbi.
I've been reading your posts. Very interesting. I also get a snarl and a chin dimple once in a while. Furthermore I've developed a really bad metallic taste. But I guess it is just "nerves" ;)
Thanks for sharing,
Kenneth
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Kenneth,
The metallic taste thing is a stage, or at least it was for me. Lasted a couple of weeks (seemed like forever).
M
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Gee I have been out-of-the-ANA-loop for a while here... busy mom thing… nada nada…
Here is an article that I sent to one of my physicians, Dr. Ng, which got the whole ball rolling, the interest up in his department …and we-all went from there.
http://www.ophth.wisc.edu/publications/fs_summer_04.pdf
It was helpful that someone had already invented the wheel and we did not have to completely re-invent. But know that we have made some modifications to our program that is up with the technological times by having patients faces checked up on by virtual technology and video conferencing … and the patients meeting with the therapist, in person, maybe once a quarter. (Saving on travel and accommodation expenses and also allow patients to bill who cannot seek out-of-state care- as I could.)
Know that I was not making too much progress in getting help from my Neurotology Otolaryngology folks (with the exception of one keen bright young keen Canadian doctor who was doing his fellowship at Stanford and wrote my initial referral- as he and I WERE on the same page as far as brain plasticity goes.) I actually went through my ophthalmologist specialist… to get this all going. It is beneficial if a Neuro muscular facial retraining therapist paired up with ophthalmologist (or even neuro ophthalmologist) as you really want to be cautious when applying botox to the eye area. My therapist and physician work as a team. She spent a long time studying my facial movement (and voids) and then decided which muscle should be botoxed. He injected the botox and remains responsible for the dry eye care related to all this. So far the two have proved to be an excellent team. Know that my upper lip finally started to move, with control, this month- 17 months post op.
Kaybo asked why we would want to used botox.
Here is a facial muscle diagram
http://www.bellspalsy.ws/muscleimage.htm
Well in my case the neck muscles of the face (platisma) started to fire first. These muscles got very strong (hypertonic) and were preventing the other facial muscle from firing. The platisma and mentalis muscles were so much stronger and too dominant. Soon the cheek on my palsy side and the neck were bigger muscles than on the non-palsy side… then came the crease beside the mouth and the dimple in the chin (over active Mentalis) . It actually started to hurt and cramp up. We botoxed the overactive (hypertonic) muscles and temporarily re-paralyzed these so I could learn to fire the other muscles and give the weaker non moving ones a chance to actually fire and catch up. It is working! The botox wears off but each time the less dominated and weaker muscles are catching up to create more symmetry. My guess is your lip snarls as it started to fire ahead of the other facial muscles and is now stronger and more dominant. It is not releasing when it should and is staying contracted. The truth is the neurotologist and the ENT folks only know “a little� about this- you need to be referred to someone more experience with “the face� specifically. My experience is that some ENT and neurotologists are not clear in what the difference is between synkinesis, hypertonic etc… Too many ANA patents in my group were not getting referrals when it is clear to the rest of us experienced ANA patients that they have synkinesis and facial issues that need to be addressed. (Yup more education is needed on AN related stuff to the medical community- that is for sure!) Remember they are specialists of the “ears, nose and throat�. I discoverer the hard way the E in ENT has nothing to do with adequate training on the “Eye�… in our AN cases. Go to a “face specialist� but more specially a “neuro�-face specialist as this is simply NOT face muscle issues but more specifically neurological issues that need retraining - with someone more qualified.
I could only do so much with the info from the bells palsy website on my own. Some exercises and messages I did were perhaps causing the muscles to get too fatigued or hypertonic. I needed to see an expert who knew what they were doing and had certified education in this area. It certainly helps to be self directed but you do need expert advice along the way…
Back to motherhood… and my facial “lip ups� for the week. I can now actually kiss my kids properly on their foreheads :-* at bedtime… Nighty night… don’t let the bed bugs bite. ::)
DHM
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Hi Daisy,
Long time no hear ;D LOL!!
Very informative articles and of course your commentary is just as informative. I am going to look into a "face specialist". I hope there are a few up here in Canada.
Thank you again for sharing with all of us.
Anne Marie
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I am going to look into a "face specialist". I hope there are a few up here in Canada.
Anne Marie
Ah my Canadian sister... drum roll please... the envelope please
http://www.bellspalsy.ws/centersC.htm
ta da ;)
DHM ;D
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Daisy - GREAT post! Thank you for all your helpful comments.
I am seeing the NMFR on Monday. Like you said, I am not sure that I am doing the exercises and massage from teh BP website correctly and always have a little fear that I could be doing more harm than good. I have regained so much movement in the mid part of my face, and don't want any setbacks at this point!
Thanks again, Daisy. And, Anne Marie, keeping fingers crossed that you find someone close!
Thanks again...
Debbi
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I think it will help with my facial pain and headaches. My Dr is at the Toronto General so when I see him on the 29th I will ask him about it.
Anne Marie
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Anne Marie PM me I am seeing a facial therapist at Sunnybrook Hospital in Toronto. Well I did for my intial consultation and now my appointments (every six weeks) are teleconference at my local hospital.
Michelle ;D