ANA Discussion Forum

Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on May 21, 2009, 07:33:24 pm

Title: question about synkinesis and exercises
Post by: CROOKEDSMILE on May 21, 2009, 07:33:24 pm
Just wondering...........I was very diligent about facial exercises but then got busy with other things and didn't do them like I should. I had gotten my blink much stronger but since I've stopped the exercises I've regressed.
Based on this observation I am thinking that these exercises are a lifelong thing if we want to maintain progress. OR is this just coincidence and once you get a certain strength back that you can keep it (blink) whether you continue with the exercises or not. What are your experiences and what has your therapists' told you? I also had stopped the cheek/mouth pulling up when I blink with very focused exercises to stop this bad habit..............I stopped the exercises as my therapist told me that I could since it had stopped but now I am doing it again. Yes.....very frustrating but more than anything have any of you been able to eventually stop the exercises and maintain all that you gained or is this typically a vicious cycle.
Angie
Life is good......still a full glass..........thinking positive.......not worrying about it too much.........just curious.
Title: Re: question about synkinesis and exercises
Post by: 4cm in Pacific Northwest on May 21, 2009, 09:39:24 pm
Sad to say that with synkenisis we have the wrong motor neuron firing the wrong muscles… and eventually the face gets tight. After Botox injection I can take a break from my exercises but once the Botox wears off the muscle become hypertonic again and I have to go back to stretching… at least until I have the next injection. I am thinking that the stretches are even more important than the exercises.

Being a busy parent I do not always have the time to do my exercises either.

We just have to say “sorry kids it is my home physical therapy time� and lock ourselves in a room and just do it.

Daisy Head Mazy




Title: Re: question about synkinesis and exercises
Post by: LADavid on May 24, 2009, 10:14:27 am
You two are a bit farther along in the process than I am so I don't think I can give you a personal perspective.  But from what I understand from my PT, as long as I am getting Botox treatments, I need to be exercising.  When the incorrect muscle action is relaxed, it gives good muscle action (exercises) a chance to work.  Then when the nerves catch on to the new muscle action, they eventually rewire. I believe at that time, no more exercises other than normal daily movement are needed.

I've had two rounds of Botox -- the third is coming in June.  I've already seen substancial improvement.  MY PT estimates that I should be close to normal in nine months.  Right now I can blink with very little mouth and cheek involvement.  Still can't smile or raise my eyebrows -- but working on it.

The best to both of you.

David
Title: Re: question about synkinesis and exercises
Post by: 4cm in Pacific Northwest on May 24, 2009, 10:45:50 pm
David is right we need to keep exercising even after botox injections...

DHM
Title: Re: question about synkinesis and exercises
Post by: saralynn143 on May 25, 2009, 07:51:21 am
MY PT estimates that I should be close to normal in nine months.

David

That brought tears (of joy) to my eyes. Go, David!

Sara
Title: Re: question about synkinesis and exercises
Post by: mimoore on May 25, 2009, 03:06:48 pm
Hi angie,
With all the conflicting information who really knows the answers. I think we are all guinea pigs.
I have the weirdest thing happening: when I try to flare my nostrils my upper eyelid goes back and forth horizontally. Obviously rewired incorrectly, cool party trick but not what a really wanted. My facial therapist is off due to health reasons so not sure what to do. Stop certain exercises, do more stretching. Some days are so discouraging.
Michelle  :)
Title: Re: question about synkinesis and exercises
Post by: Chambo on May 25, 2009, 08:11:51 pm
You two are a bit farther along in the process than I am so I don't think I can give you a personal perspective.  But from what I understand from my PT, as long as I am getting Botox treatments, I need to be exercising.  When the incorrect muscle action is relaxed, it gives good muscle action (exercises) a chance to work.  Then when the nerves catch on to the new muscle action, they eventually rewire. I believe at that time, no more exercises other than normal daily movement are needed.

I've had two rounds of Botox -- the third is coming in June.  I've already seen substancial improvement.  MY PT estimates that I should be close to normal in nine months.  Right now I can blink with very little mouth and cheek involvement.  Still can't smile or raise my eyebrows -- but working on it.

The best to both of you.

David

I'm with you David.  The botox has been working a treat.  I just got back from my 3rd visit and will now go every 4 months to re inject just the chin and neck muscles.

Just make sure the doc doesn't get too fancy and inject too many overactive muscles around the mouth.  I had a slight set back after my 2nd visit which left my lip a little flat.  It's pretty much come back now but it was the last thing i needed.  Anyway, we're pretty good at being patient us ANers.

I've found the overactive neck muscle is pretty much back to normal now after being extremely tight before the 1st visit. Might not even need to botox it come visit 4.  Same with the chin dimple - nowhere near as bad as it was 12 months ago.

So David, when are you expecting your next call from Tarantino?!
Title: Re: question about synkinesis and exercises
Post by: LADavid on May 26, 2009, 04:46:42 pm
Hey Simon
Good to see your post and hear that you're doing well.  It does seem that getting the right amount of Botox in the right places is sort of hit and miss.  On my second treatment, the PT and I suggested to the doctor that I needed a heavier dose.  It worked for the neck muscles, but I had too much in my eyelid and couldn't close my eye well for about two months.  Next appointment in June, less eye, more neck.  But overall, I am seeing results and people that know me tell me that they're hardly noticing the problem when I talk -- just when I try to smile.

I would love to work on a Tarantino film.  But for the time being, I'm just writing a screenplay that has the feel of a Tarantino story.  Maybe I'll cast me in it.

Hope your recovery continues to progress well.

David
Title: Re: question about synkinesis and exercises
Post by: elderbirds on May 26, 2009, 08:21:13 pm
dumb question, but who does the Botox injections?  Do they hurt?  I will e-mail my doc and see what he recommends.  I am not due back until my 18 month check in October, but if there is something that can be done sooner...
Hope
Title: Re: question about synkinesis and exercises
Post by: leapyrtwins on May 26, 2009, 09:15:20 pm
Hope -

I haven't had Botox, but I'm thinking perhaps you'd see a dermatologist or a plastic surgeon? 

I'm sure someone will chime in with the answer shortly - that's one of the great things about the Forum.

Glad to see you back; it's been a while.

Hope you are well.  Any chance you're attending the symposium in August?

Jan

Sorry for the hijack, all  ;D

Title: Re: question about synkinesis and exercises
Post by: Chambo on May 26, 2009, 10:58:05 pm
A Tarantino-esque script... I like the sound of that David! Look forward to seeing it debut at Cannes...

Hope - re botox injections, make sure you see the right person.  I see a Neurologist who specialises in hemi-facial spasms (that the right terminology?).  So he knows exactly what to target.  I'm not sure a plastics/cosmetics type is the right person for this unless someone tells me otherwise.  David is right, it is hit and miss for the first couple of sessions until you nail the right doses in the right areas.  For me, it will pretty much be just the chin dimple and neck muscles moving forward.
Title: Re: question about synkinesis and exercises
Post by: CROOKEDSMILE on May 27, 2009, 08:36:40 am
Hey guys.
It is just so weird because I rewired (or so I thought) the ability to blink without the mouth/cheek going up so we stopped those exercises. Now it is back. So it makes me think that you can't rewire it permanently and that you must always do the exercises. I'm confused. I go back to my therapist in August for botox and exercises so maybe she can help with this. SOOOOOOOOOO frustrating.
Angie
Title: Re: question about synkinesis and exercises
Post by: LADavid on May 27, 2009, 06:02:29 pm
Hope -- I get my Botox treatments from my doctor at House who did my AN surgery.   He has a clinic once a month.  I think he has a full schedule that day.  And unfortunately -- it's not without pain -- especially in the eyelids.  I wasn't ready for it the first time.  The second time was my birthday and I had just polished off a bottle of wine with my daughter for BDay lunch -- and the shots didn't seem to hurt as much.

Angie -- sorry to hear about the set-back.  I was under the impression that once the nerves were retrained -- everything would be back to normal.  I'm seeing my Physical Therapist next week and I'll ask.

David
Title: Re: question about synkinesis and exercises
Post by: 4cm in Pacific Northwest on May 27, 2009, 09:59:18 pm
Botox injections do not have to be a “hit and miss�… if you a have physician and a neuromuscular facial retraining therapist working together “as a team� you will increase the chance of hitting the target.

Here is an article to read from the University of Wisconsin
Neuromuscular Retraining and Botox:
powerful pair in treating facial paralysis by Elizabeth Koenig
http://www.ophth.wisc.edu/publications/fs_summer_04.pdf


Here is a link to the Bell Palsy site that explains this more also
http://www.bellspalsy.ws/retrain.htm


I have a therapist, named Wanda Crook, who was trained by the therapist mentioned in the article


Here is a list of therapists in this highly specialized field.
http://www.bellspalsy.ws/centers.htm

Initially I did not have one available to me in my local so I contacted one in San Diego on the recommendation of Jackie Diels (the therapist in the University of Wisconsin article.) I then connected her to my ophthalmologist (also does Oculofacial Plastic Surgery) that gave me my stick-on-eye weight (blink-eze) and the two of them have now formed a partnership. She videoed and did intensive study of my face and where the synkenisis is. She then instructed him where exactly to inject the Botox. This summer they will start their clinic at OHSU where she will fly in every quarter to evaluate patients -here in Oregon. Then in-between-consults will be done via video conferencing at OHSU. Before this the staff confessed that it was sometimes more “hit an miss� as to where and how much to inject- now that they are working “as a team� they are more “on target�.

I have found the Botox quite successful but it is sometimes hard for me to take the daily time to do exercise, with kids and all, in between injections. Summer is almost here so I hope this time management issue improves.

Interesting that the Botox wore off very quickly – this dose. I got a nasty round of poison oak (Urushiol oil) and had to take max dose of Benadryl. I am wondering if the antihistamine reduced the effectiveness of the Botox. Anyone else have this?




Know that the skills I mastered (like pursing my lips without my eye closing) have stayed re-wired. What have increased are the hypertonic muscles (tightness i.e. dimple in chin etc and tight neck muscles). Re does injection hurt? I hardly feel these in the neck but as we injected closer toward the center of the face I feel it. It is much like getting an immunization shot- the bees sting sensation dissipates after it is done. Applying ice on the injection helps.

DHM


Title: Re: question about synkinesis and exercises
Post by: elderbirds on May 28, 2009, 08:38:33 pm
thank for the info, I will check out the websites.  Funny, I survived brain surgery and all that goes with it, I really shouldn't be concerned with the discomfort of needle sticks!
Hope
Title: Re: question about synkinesis and exercises
Post by: rahul_india on May 01, 2014, 05:56:38 pm
Hi 4cm in Pacific Northwest

Sir/Mam

I am from India and my life has become hell since i suffered Bells palsy last year October. I recovered in 2 months and it felt as if I am cured but issues started two months ago. My left side face started twitching especially in the eyes and after that I see synkenisis in my face. When I pout or try to move my lips outward my eyes closes. Eyes also closes when moving that side of Face.

To be precise I dont have  that much money to travel abroad and get my self treated. Can you all or any one of you please help me how to start with those retraining exercises. I missed my chance for the army and also for many other competitive exams also. I have missed so many things in my life because of this. Kindly help me how to retrain my muscles. How to perform these exercises. We dont have any good physiotherapists over here as well.
Title: Re: question about synkinesis and exercises
Post by: Kristena on May 03, 2014, 01:38:04 pm
Hi Rahul,

Those posts were from a long time ago, and I'm not sure if they are still active on this site or not. I'd be curious to hear how they have progressed in the past several years.

I too have facial paralysis. Some of my muscles starting coming back very slowly at about 4 mos post op, and it was another couple months later that the synkinesis started--everywhere. I am lucky enough to be working with a facial therapist and have access to Botox, but it's still been a very slow and frustrating process.

But I recently came across the Bells Palsy Retraining website that they mentioned earlier in this thread, and it made me feel like there is hope. I think you need to spend some time every day (more than once if you can) in front of the mirror, and very slowly inch up on the wanted movements that cause you synkinesis (like smiling or puckering your lips, etc.). As soon as the synkinesis muscles start to move, stop and try to relax those muscles. It's extremely hard--especially when you aren't even telling those muscles to move. I think I'm having some success with some areas in being able to separate those actions, and no control in other areas, but in real life when talking or licking my lips (or so many other things), I have no control.

But according to the website, it could take a couple years! I think I might re-read it monthly to get that positive feeling back. I wish you the best! Write back with your progress.