Facial Recovery is VERY individual and not a One Size Fits All.

[CROOKEDSMILE]

I think this is important to talk about because I know how we are always comparing our recoveries to everyone else's. My prognosis given to me by my therapist is going to be different than the next person's prognosis. It is VERY individual based on the type and severity of the nerve injury PLUS I had a brainstem stroke during my operation making my prognosis for recovery and my healing expectations different from the norm. My therapist has told me at 2 years post op I am most likely done healing and that the synkinesis will be something that I will battle from here on out but with exercise and botox we can keep it in check. Being a nurse I understand that any insult to the brainstem that controls breathing, vitals, and other important functions for survival is a challenge but can be overcome. It is a factor to consider when looking at potential final outcomes. I do know that my therapy did change some when my facial retrainer got the news that a stroke was involved. This is very recent news that I found out 2 years after my surgery. SOOOOOOOO with this being said............Ask YOUR therapist about YOUR chance for full recovery, synkinesis, botox, facial retraining, etc. and see what YOUR prognosis is as it will most likely be different than my own. We all know that if you asked 100 doctors a question you would probably get 100 different answers. NONETHELESS................they are not GOD and no one has the right to take away our hope.  Medicine is a science and they are constantly discovering new therapies and as we know one day something is good for us and then the next day the medical folks will tell us that .......no, that will KILL you...that's bad for you. I refuse to give up hope, I refuse to believe that I am done healing at 2 years because I've seen people like Jeanlee get improvement after that mark and I will continue to have faith. I am frustrated with the recent news from my therapist about synkinesis and recovery BUT like I said if I went to someone else then they would probably tell me something different. I probably will stop with my exercises only because I didn't do them the last 4 months and when I went in I had improved by 20 points. Sounds like TIME might be our greatest healer. This is a personal decision. I will keep up with the botox because it keeps things loose. Going to see my therapist to be told the same thing every 3 months is something that I have to decide if it is worth my money and time. I travel 6 hours away so it is gas, hotel, food, etc. Again another personal decision that we each have to make for OURSELVES. I live a great life full of love and happiness and if I don't heal anymore past this point then I am just thankful to be up walking and talking and feeling great. Overcoming a brainstem stroke is a miracle in itself so I think God has great plans for me and I'm determined to make him proud. Good luck to those of you out there with facial paralysis. It's a long road. Ask questions, do your research and then figure out a plan that works for you. Believe what you want and hold onto hope. I've seen LOTS of people beat the odds many times in my career and I also believe in miracles. Sometimes I feel like no one really has the answers for this facial paralysis beast and the things that go along with it. I feel like it's alot of guessing. Alot of trial and error. It can drive you crazy. Don't let it. Do what my 88 year old Grandmother says to do...."Let go and Let God." I have gotten frustrated with my exercises because my mouth would smirk everytime I blinked......Well the therapist had me do exercises to stop that improper movement. The exercises worked and the smirk/pulling up stopped. (great I thought.....I RETRAINED MY BRAIN!) 6 months later it is back doing it again......why? I thought I taught my brain the RIGHT way! I was told by my therapist that my nerves rewired back wrong after the nerve injury and that it would be a constant Retraining! Really? So......needless to say it makes it hard for me to want to do my exercises if it isn't going to be long lasting. Who knows what the answers are!!!!!!! Again this is a personal decision for me to stop my facial exercises. I exercise my mind and body with yoga, tennis, swimming and chasing my two sweet boys. For me...........My life is good and I am ready to move on. I would like to think that I am moving on with the RIGHT information and  making the RIGHT decisions but as those of us with facial paralysis know............there are a 1,000 right/wrong answers based on what doctor or therapist you ask and you have to pick and choose what works for you.
Angie

[epodjn]

I hear you and totally agree with what you said. My therapist has a funny saying, "You can't walk your dog to Texas and back and think you are done". In other words, you have to do your exercises everyday not just until the problem has been fixed. At least that is what she has told me.  Just because i have finally gotten my mouth to relax a little and not do the "Joker" smile when I am stressed doesn't mean I can stop doing the exercises, or it will come back. But at least the exercises work!!! I just figure it's like brushing your teeth. Ya gotta do it everyday, no matter what, so just get used to it. Hang in there. I think you are right about this whole facial paralysis thing being a guessing game for doctors and therapists. Everyone's outcome is different. There is no way of telling what your outcome will be until it happens. In the meantime you might as well find something to laugh about. It can get kind of depressing if you don't.

[leapyrtwins]

It's something we always say in relation to acoustic neuromas - everyone's AN Journey is unique.

Jan

[moe]

Angie,
So much to think about on your post!
Every case IS different. Amazingly different. A whole different story.
The most frustrating part of MY story is that I have gotten no answers from anyone about what may/may not work with the facial paralysis. Unbelievable.
All my advice comes from co workers, and this forum!
Also the fact that I'm military and had surgeries all over the place has been a factor.
I'll let you know how the acupuncture helps. I start in 2 weeks, and feel hopeful from this clinic in WA.
They practice traditional Chinese acupuncture, the 2,500 year old book of acupuncture.
I will of course pay out of pocket, but worth the price.
This place is conveniently located so I can even do home health visits, and then get my acupuncture!
Hoping for more movement in my upper lip/cheek.
You sound like your life is very nice and full and balanced, Angie
Maureen

[4cm in Pacific Northwest]

.... My therapist has told me at 2 years post op I am most likely done healing and that the synkinesis will be something that I will battle from here on out but with exercise and botox we can keep it in check. Being a nurse I understand that any insult to the brainstem that controls breathing, vitals, and other important functions for survival is a challenge but can be overcome. It is a factor to consider when looking at potential final outcomes. I do know that my therapy did change some when my facial retrainer got the news that a stroke was involved. This is very recent news that I found out 2 years after my surgery. SOOOOOOOO with this being said............Ask YOUR therapist about YOUR chance for full recovery, synkinesis, botox, facial retraining, etc. and see what YOUR prognosis is as it will most likely be different than my own. We all know that if you asked 100 doctors a question you would probably get 100 different answers. NONETHELESS................


 ...I am frustrated with the recent news from my therapist about synkinesis and recovery BUT like I said if I went to someone else then they would probably tell me something different. I probably will stop with my exercises only because I didn't do them the last 4 months and when I went in I had improved by 20 points. Sounds like TIME might be our greatest healer. This is a personal decision. I will keep up with the botox because it keeps things loose. Going to see my therapist to be told the same thing every 3 months is something that I have to decide if it is worth my money and time. I travel 6 hours away so it is gas, hotel, food, etc. Again another personal decision that we each have to make for OURSELVES. ...


...Well the therapist had me do exercises to stop that improper movement. The exercises worked and the smirk/pulling up stopped. (great I thought.....I RETRAINED MY BRAIN!) 6 months later it is back doing it again......why? I thought I taught my brain the RIGHT way! I was told by my therapist that my nerves rewired back wrong after the nerve injury and that it would be a constant Retraining! Really? So......needless to say it makes it hard for me to want to do my exercises if it isn't going to be long lasting...

Angie,

This time last year I had to do ID card photos as a school volunteer. She said, "Give me a big toothy smile!" I explained that all I can muster is a Mona Lisa smile... such a stern and serious parent I looked in my photo ID last year.  Today I had to do it again... this year you can actually see some upper teeth and what is amazing is that the eye did not blink. I actually got a symmetrical smile with some teeth and some warmth to my smile. THAT the therapy helped me with...  the ability to smile and not involve the eye took therapy and PRACTICE. (I was showing my 2 photos, over a year, off as comparisons today - to anyone who knows what I have been through) Even the non-AN people could see the small millimeter victory

I believe the brain WILL stay wired "if" you practice enough. It is like scales on the piano... my brain can still do this as I did learn as a child... but I am rusty and fumble on the minor/majors if I do not practice regularly. The face is the same.



The other thing I practice is eating in front of the mirror - when alone at lunch. AT first I was mortified by this and watching the eye involvement when chewing... but now it is much better... and I have more confidence to go on lunch dates in public. This took therapy and practice...

You are not giving up in you neuromuscular facial retraining therapy are you?

The two months I did not practice diligently my facial exercises and stretching- I regressed (big time). Now I am back at it- we are getting back to where I left off.

Angie as a nagging MOM here- you need to still do your practicing even if you think you are not going anywhere and it is just healing with time... Start making not just photo documentation but video ...and then compare the videos at 6-month intervals.... this is when you realize that the therapy does work ... and may not work when you stop. (As was what I documented when I was not diligent this summer)

Even stroke victims can regain movements even of that part of the brain was damaged.

You need to read The Brain that Changes Itself by Norman Dodge- if you have not already

http://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100

Keep working at it. If you do not want to keep going (and forking out money for) therapy I totally understand but do not stop working on what you have learned at home. My 10-year old set up for me an obsticle course that I do - for her. She is the one pointing out that I am getting better an doing the more difficult ones that she whizzes through. This is great QUALITY parent child time together... right up there with being determined to ride bikes with them.

Don't start thinking that at 3 years this is as good as it is going to get... you have to keep at it.  ... ... ...

Nag nag nag with BIG HUGS...

DHM

[CROOKEDSMILE]

Jan~Yep. Very unique but it is nice to remind ourselves of this from time to time because I am guilty of trying to compare my FACIAL recovery to the next persons and you just can't do that.  I think that this really hits home to those of us with facial paralysis issues. Not to say that they are harder to deal with than the other complications such as hearing loss but that we can "SEE" it and this makes us more prone to be harder on ourselves and start to compare notes with other facial paralysis folks. This is just as much of a reminder for me as anyone else and it helps to talk about it. What a wonderful forum that allows us to do so!
Angie

[ToddH]

Thanks for your remarkable input & insight! The idea that you must continue exercising forever to retain what you have regained from the exercise/facial retraining program is an important subject. It is unusual to have a synkinesis pattern return after getting rid of it, but I suppose the mechanism to explain it would be the following: movement is controlled neurologically by particular pathways, fairly complex ones involving a large number of "circuits" firing in a particular way to achieve a particular movement. An example would be learning to play tennis. When one picks up a racket for the 1st time, the pathways for moving the racket, hitting the ball, directing the ball are all very rough and unrefined. You miss the ball, you hit it in the wrong direction at the beginning. You are probably using a million nerve pathways. With practice, these circuits start becoming more precise in their sequence of firing, so you start to improve and start hitting the ball everytime and actually direct it over the net... instead of using a million pathways, you refine to down to a thousand. The fine motor control required to play tennis comes through practice and refining the precise pathways required to do it correctly. This is true for facial movements.
Now let's put it laymans terms:  to smile, a particular "hiking trail" needs to be followed from the cortex of the brain to the muscles in the face that makes a smile happen. Synkinesis is essentially the process where the hiking trail has developed a lot of offshoots going in different directions and the "message" from the brain is now going along many "offshoot trails" in addition to the primary trail it used to follow. Retraining is essentially relearning to follow the proper trail again, while not using the "offshoot trails" anymore. Here is the problem, the offshoot trails still exist, they have just been "grown over with shrubbery" from disuse. The longer you go smiling correctly,  the more the old trails grow in and can't be used anymore (will have to finsih later, a problem with space has come up?)

[ToddH]

I was having some trouble at the end, so will finish here... when the incorrect pathways to unwanted muscles are not used, they become dormant in a way. I suspect what happened to you was that they started being used again after 6 months. Not sure why. I tell my patients at discharge that they should continue to do the exercises 3x/week for another few months, then can stop altogether. And I also say, if something (smile?) gets worse later, you can restart the pertinent exercises again until control regained. The feedback that I've received from old patients is that they kept what they had gained and did not have to keep doing the exercises on an ongoing basis.
There was a research study done at Sunnybrook Health Science Centre in Toronto (Ross, Nedzelski, et al), published in 1991, that showed good results from facial NMR over a 1 year period (one group=control, one group=mirror feedback, one group=mirror + surface EMG). Both feedback groups made significant progress compared to control. All subjects were 18 months or longer post-onset (so that spontaneous recovery as reason for progress could be ruled out). The interesting thing about this is that they published a follow-up study that looked at the subjects 3 years later (they had not continued facial NMR or home exercises) and this showed that they did not significantly backtrack. This is the only study of it's kind, but it is encouraging in that it indicates you do NOT have to keep exercising daily to keep your facial palsy condition from regressing. The gray area is how long do you actually have to do this retraining? 6 months?, a year? 2 years? That is question I don't yet have an answer to.  I just discharged a patient who got her facial palsy from TBI (traumatic brain injury from ATV accident) 2 1/2 years before referred to me. Her palsy had characteristics of a peripheral nerve injury, not a central one, which is important in prognosis . Her smile was about 75% of normal at start, after 5 months of therapy, was 100%. She did her exercises diligently, and in this case it took 5 months.
Hope this sheds some light. Take care,
Todd

[4cm in Pacific Northwest]

“Marian the librarian” (… who is a Canadian residing in the USA) popping in here

Hi Todd- we met at the Chicago symposium … 

Thanks for your input here- I like the hiking trail analogy.

Who’s Todd?

Todd, if I am not mistaken, manages the bells Palsy website (correct me if I am wrong here)

http://www.bellspalsy.ws/

Todd is involved in both a professional and personal level with Bells Palsy issues… and like us also has hearing loss (again correct me if I am mistaken)

Dr Nedzelski, who is referenced above by Todd, is a Canadian neurtologist who is considered to be the Canadian equivalent to our Dr. Brackmann here in the USA. (Ok OK it is no secret that I really like Dr. B.  )
Dr Nedzelski is actually one of the presenters at the  Acoustic Neuroma Association of Canada conference, next weekend, in Vancouver (BC Canada… 1 hour drive over the US border)

See this thread on the conference
http://anausa.org/forum/index.php?topic=10426.0
This PDF link for brochure
http://www.anac.ca/endocs/registration_form_2009.pdf
(Thanks Steve for finding that BTW)

Dr Nedzelski's bio:
http://www.sunnybrook.ca/team/member.asp?t=14&page=2152&m=207

(I spoke with enough neurosurgeons and younger neurotologists in Canada to know Dr. Nedzelski is one VERY well respected man in the Canadian Acoustic Neuroma world)

Ok OK back to my facial stretching and excercising… and a hike through the woods…


Signed Daisy Head Mazy…

[4cm in Pacific Northwest]

Dr Nedzelski is actually one of the presenters at the  Acoustic Neuroma Association of Canada conference, next weekend, in Vancouver (BC Canada… 1 hour drive over the US border)

See this thread on the conference
http://anausa.org/forum/index.php?topic=10426.0
This PDF link for brochure
http://www.anac.ca/endocs/registration_form_2009.pdf
(Thanks Steve for finding that BTW)

Ok I MAY be mistaken that he is actually a presenter next weekend... the PDF was confusing... It states he is one of the ANAC founders...

DHM

[sgerrard]

Thanks for your remarkable input & insight! The idea that you must continue exercising forever to retain what you have regained from the exercise/facial retraining program is an important subject. It is unusual to have a synkinesis pattern return after getting rid of it, but I suppose the mechanism to explain it would be the following: ...

Todd H., I just wanted to thank you for joining the forum and participating, it is wonderful to have a facial nerve expert on board.

I am also trying to figure out if we sat at the same table at the banquet in Chicago. So far I have figured out your name, from the reference to May's 2nd Edition.

Steve

[ToddH]

Just to correct, I do not manage the Bell's Palsy Information Site, that is Jan, who had Bell's palsy with incomplete recovery and started the site. The site is a credit to her dedication & diligence. Truly a saint, I think. My role is to act as moderator for two of the Forums - Treatment and Botox.
Todd
PS. Steve, I believe we met also, perhaps at the Banquet? I'm glad to contribute and believe knowledge is power... the ANA is great in this regard.... the opportunity to hear, at the Chicago symposium, some of the world's foremost experts presenting the latest information was incredible!

[mimoore]

Great post Angie.