question about synkinesis and exercises

[CROOKEDSMILE]

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.

[4cm in Pacific Northwest]

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

[LADavid]

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

[4cm in Pacific Northwest]

David is right we need to keep exercising even after botox injections...

DHM

[saralynn143]

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

[mimoore]

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 

[Chambo]

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?!

[LADavid]

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

[elderbirds]

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

[leapyrtwins]

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 

[Chambo]

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.

[CROOKEDSMILE]

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

[LADavid]

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

[4cm in Pacific Northwest]

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

[elderbirds]

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