I'm Snarling...

[Debbi]

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

[jerseygirl]

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

[sgerrard]

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

[Debbi]

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

[jazzfunkanne]

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.

[Debbi]

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

[MAlegant]

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

[kenneth_k]

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

[MAlegant]

Kenneth,
The metallic taste thing is a stage, or at least it was for me.  Lasted a couple of weeks (seemed like forever).   
M

[4cm in Pacific Northwest]

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 littleâ€? about this- you need to be referred to someone more experience with “the faceâ€? 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 throatâ€?. I discoverer the hard way the E in ENT has nothing to do with adequate training on the “Eyeâ€?… in our AN cases. Go to a “face specialistâ€? but  more specially a “neuroâ€?-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 upsâ€? 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

[yardtick]

Hi Daisy,

Long time no hear    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

[4cm in Pacific Northwest]

 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 

[Debbi]

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

[yardtick]

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

[mimoore]

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