ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: LADavid on September 17, 2009, 03:05:46 pm
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A few weeks ago, Angie posted a very frustrated comment. Her PT informed her that synkinesis never goes away. Here all this time, I thought the nerves would rewire themselves somehow and I would be normal again -- it would just take two years of PT and Botox.
So on Tuesday I asked my PT if it would go away. I found out the ugly truth -- no it doesn't. It's permanent. It can only be managed with excersizes and Botox. That signaled the end of my acting career. That news culminated a pretty grim Summer of bad news and difficulties. I'm looking forward to putting it all behind me.
David
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I don't know what to say, David...Sorry just doesn't seem to suffice...your in my thoughts and prayers...
K
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David ~
That is a tough piece of news to have to deal with. You know you have the support of everyone here and of course, our prayers for your physical and emotional healing.
Jim
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David, I am so sorry. I do hope there will be other opportunities for you, career wise. Writing, voice overs maybe. I will be keeping you in my good thoughts and prayers.
Love,
Sue in Vancouver USA
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David,
I, too, am at a loss for words. That is a bitter pill to swallow and I am so sorry that it affects your career so greatly. I will be thinking of you and sending you positive thoughts and prayers as you digest this and begin to think about the next step. Good luck!
Cheryl
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Thanks everyone. As more doors close, the one that remains obviously open is writing. I need to just accept the fact that I have a great opportnity that I've been avoiding for the last year -- although I did write an initial draft on my first screenplay this summer. I liked writing it better than the final outcome. And I started working on a second one with my college roommate -- after all these years.
And Cheryl, if I'm not mistaken, I think we are getting together with you next week. I need to check with Nancy -- she's the coordinator of these things. Just so you know, it's going to be very hot (again) in LA during the first part of next week.
David
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David, you are an excellent writer and I encourage you to pursue that. (I should really be bugging my editor for another assignment. Unfortunately life keeps infringing on my writing time.)
On the other hand, might there be some other great roles out there involving your feet?
Take care. I'm keeping you in my thoughts.
Sara
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David -
I'm sincerely sorry to hear this :'(
As others have said, you are a very talented writer; when God closes a door, He opens a window. ( I think I got that right, but regardless you know what I mean).
I'm confident the future holds great things for you; this is just another obstacle in your AN Journey, but you will overcome it.
Best,
Jan
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Oh, goodie, David, I didn't know if I was going to see all of you!!! Looking forward to it - and Nancy gave me her favorite weather site so I have been monitoring and can see it is still summer there! Here we are already in fall...figure with AC on, it will still be chilly in hospital but will pack for summer for outings (if I get out!:)
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Oh David life sucks sometimes doesn't it? Plain and simple - sucks. You are down and think of the bright side up is the only way to go now!
I have enjoyed your writings so remember your talents don't just end with acting! Sometimes the light at the end of the tunnel is small but look closely it is there!
Hugs Michelle :-*
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David,
You hate the truth just about as much as I do when I got this news. At least we can slowly begin to accept and move on which it sounds like we are both starting to do. No one likes to be lied to or have things candy coated when it comes to their health and expectations for recovery. It has been a LONG journey and I'm glad that I've had you to talk to on Facebook for support. You know I'm always here for you.
Talk to you soon.
Angie
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Sending you a big hug, David. Having seen some of your writing, though, I think you have a great career as a writer. Do you know how good you are??
hugs,
Debbi
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David:
That is a hard blow to take. Maybe putting acting behind you will allow you to give writing your all. I wish you the best.
Syl
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David,
When I saw my 1st signs of synkenisis I knew that this was it – and that finding a neuromuscular facial retraining therapist would help me to “manage†this from getting worse …but there was not a complete cure. I have better control of my face and some things are staying re-wired but I will never have 100% symmetry or completely normal facial animation again. But similar to being a musician it takes regular practice to maintain this.
Please read this article again
http://www.ophth.wisc.edu/publications/fs_summer_04.pdf
Neuromuscular Retraining and Botox:
powerful pair in treating facial paralysis by Elizabeth Koenig
Quote from that article
“...After nine years of traveling to the Madison
clinics, Niesen says she will continue to make
the trip to see Diels and Dr. Lucarelli. “Jackie
and Dr.Lucarelli are a good team – they work
hand-in-hand to provide the best treatment
for my individual situation,†Niesen says.
Her treatment has allowed Niesen to continue
singing – but not in solo roles in musicals or
plays where all eyes would be on her. “I’m still
not able to show full emotion,†she says.
However, she does sing masterpieces with
the 150-member Dudley Birder Chorale, an
audition-only group in Green Bay that
performs at St.Norbert College in De Pere
and the Weidner Center in Green Bay. “My
appearance is much better and my face is
more relaxed since the Botox injections,â€
Niesen says. “I feel grateful about how far
I’ve come.â€■
The first day I could not form a proper embrasure to make a sound with my flute was devastating: … :'(
• … From there the 1st time I could not listen to my favorite concert pianist, Jon Kimura Parker, in stereo (only mono)
I came home from his concert in absolute tears (well one eye teared anyway… ::) :-\ )
• … Facial issues affecting my public speaking
• … Balance in dance moves and the …hyperacusis interfering with all my performing arts abilities
• … No directional sound to hear cue on stage or students asking me questions
• … The list of CON’s goes on.
However I had a very good life in the arts :)
Know that a NEW LIST is forming of PRO’s :) … and I know that there are still other arts forms: visual, literary etc. that I can apply those skills to. :) Before this whole AN journey I would never have guessed that I would so enjoy working in a library… as I was so busy performing I never actually had enough time to read … and writing … well that required too much quiet time. But you know I am discovering a whole new art form… and I actually like the quiet (ok ok I have hyperacusis to thank for that ::) ) and I know my senses are so much more aware to other things and forms of expression.
It is important that you realistically grieve what you have lost but know that there is a whole other part to your acting experience that you can apply to other parts of your life …and yes even your career and vocation. After reading YOUR article in ANA Notes- I have no doubt that you are an accomplished writer ready to be more published… and yes even write screen plays if you choose.
Midlife career changes are not the end of the world… but they can be turbulent.
You are going to develop a new vocational side to you that you never perhaps realized you had. No one can strip you of what you have accomplished in your acting career before the tumor… You can apply that expertise to another art form. That creative and expressive side of you IS still there. You are just going to have to find new skills and a different media to express this.
You have every right to feel sad and grieve what you have lost. HUGS ...But know there is a new path you are going to explore that you never dreamed you would. Keep moving forward David… If you look back too much you will become sad and depressed about disabilities. Keep moving forward and find out what your other ABILITIES are.
Sincere HUGS. You ARE going to get through this and it is totally OK to express your frustrations here.
Another HUG.
Keep moving forward.
DHM
P.S. “Keep moving forward†comes from Meet the Robinsons
Lyrics to read as you listen to the music
http://www.lyricsmania.com/soundtracklyrics/meet_the_robinsons_soundtrack_lyrics_1137/little_wonders_rob_thomas_lyrics_17452.html
Here is the video clip on you tube
http://www.youtube.com/watch?v=jsT2URr1Igc
PPS
Mayor Sam Sullivan of Vancouver BC Canada is a man who became a quadriplegic after an accident- before that accident he was a competitive skier. He sunk into a depression for a while there ... until he realized he had other gifts. Believe-you-me he was very instrumental in getting the Winter Olympics to his city (and country) for this upcoming year.
Read his biography
http://en.wikipedia.org/wiki/Sam_Sullivan
Here is a famous CBC documentary video of him flying the Olympic flag and some background info...
http://video.google.com/videoplay?docid=-3701104962090824149&ei=g8e1Sp5RhJyoA9SflYIC&q=mayor+of+vancouver+bc+winter+olympics&hl=en&client=safari#docid=2241261049386501040
Here is his website
http://www.samsullivan.ca/goal-arts
He has the ultimate “keep moving forward†spirit… doesn’t he? :)
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A few weeks ago, Angie posted a very frustrated comment. Her PT informed her that synkinesis never goes away. Here all this time, I thought the nerves would rewire themselves somehow and I would be normal again -- it would just take two years of PT and Botox.
So on Tuesday I asked my PT if it would go away. I found out the ugly truth -- no it doesn't. It's permanent. It can only be managed with excersizes and Botox. That signaled the end of my acting career. That news culminated a pretty grim Summer of bad news and difficulties. I'm looking forward to putting it all behind me.
David
I don't know about that mate. I saw my neurologist recently who administers my botox injections and he was amazed by the improvement in my synkinesis. He said the involuntary movements in my neck and chin muscles were now pretty much non-existant. I asked if this was because of the use of botox and he said may be but he wasn't sure.
Also, when i blink you can barely notice the twitch at the corner of my mouth - it used to tug/pull/jolt. It's negligible now.
So don't lose hope. And anyway, I'd back my world leading neurologist over a PT any day of the week!
I look forward to seeing you on the silver screen again in no time!
Your mate downunder,
Simon
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Simon,
What happens to your face 3 months after the Botox wears off? Is there any regression in the appropriate facial movements?
I know that I can now pucker my lips without the eye winking now- even after the Botox wears off.
The thing is with the Botox is -some days I feel like the patients in the film Awakenings (starring Robert DeNiro and Robin Williams)
http://en.wikipedia.org/wiki/Awakenings
I have this window of normalcy :-\ - then the drug wears off and my face becomes painfully hypertonic again. :-[ I do the stretching and exercises in hopes that things will not get so tight in between injections. There are obviously some things that are staying re-wired 8) - like puckering my lips and the eye is no longer weirdly involved ... but every time the Botox wears off and the synkenisis and hypertonic muscle return- truthfully it makes me frustrated and almost want to cry :'( . (Unfortunately I come from a British stiff-upper-lip childhood upbringing :-X so truthfully I hardly ever cry and if I do only one eye tears –now.) If I am diligent with the stretches we have noted I need less Botox but if life gets busy (as for ANY parent) and I cannot fit the stretches in- more Botox is needed to relax the hypertonic muscles.
It is not just for cosmetic reasons I accept the Botox as my face actually hurts and the lip gets so tight that I often bite it- and then it bleeds and gets infected with a sore.
• Will I spend the rest of my life having Botox injections? ???
• How much Clostridium botulinum (Botox bacteria) will my body tolerate - over time? ???
• The insurance bills are showing $1000 per injection visit (per every 3 months!) ... :o
• What happens if I am one of the people who for some unpredictable reason insurance won't cover me …down the road? :-\
Over the weekend at my support group meeting- we had another person, a middle aged educated professional, loose their job- alongside with their medical insurance. :-\ All this happening pre retirement! :o ... This person feels it was from not performing well due to the hearing loss from the acoustic neuroma …and being discriminated against because of their disability. (Answering phone calls and hearing clients correctly was an issue. Some clients were VERY rude and insensitive about the hearing disability) Pretty tough to be in mid-life trying to make career changes and find another employer with a good benefit package in these tough times. (Especially with Oregon State having the highest homeless rate and increasing unemployment. Even Starbucks is cutting back- Mike I hope you are reading this…) One person suggested the baha conductive hearing implant- and that person retorted how would they pay for it with no insurance- NOW. Too often the “haves†and the “have-nots†become apparent, even with in our own ANA support group … This is SOOH wrong!!!!! Where is the justice here? … I am asking so many questions about our society and healthcare?
I gave birth to child #1 in a regional hospital in Canada. I was placed in a room with 3 others … who were teenage pregnancy students from the school I actually taught at… as there was overcrowding in the hospital. (SO much for privacy!) The care was not great – and perhaps I asked for discharge WAY before I should have (and later had post-natal issues such as mastitis ...but a nurse did come later to my home.) . I gave birth to #2 in the USA, a wonderful birthing room in a Portland OR hospital, and had a great experience.
• In Canada I never saw the bill.
• In the USA my insurance paid the bill. However I did see “the billâ€. $27 for the 2 Tylenol pills :o I asked for … hmmm? ($3 for 200 at Walgreens??)
Pros and Cons to both systems (You should have seen my Stanford bill for the AN surgery and being hospitalized for 2 weeks!!!!!) What the heck do people do -without health insurance in this country??? I guess they are stuck with the local doctor who I refused in my research (that is if they actually have Medicaid) … Something is totally “a miss†here…
Hey what if this happens to my family and a couple of middle-aged educated professionals are looking for employment. Do I move back to Canada (where I am a citizen and a county foreign to my children who were raised here in the USA?) ... and what if the Canadian PCP (GP) decides the Botox is "cosmetic" (unlike my PCP here)? Gee it would not be covered then?… HMMM and good luck changing your PCP (GP) in Canada (from my past experience anyway) … Gee going through a “make a good first impression†job interview with a synkenisis face. It has not happened to me- but it could!
(David I am sending you a big empathetic HUG!!!!)
There is a bigger picture here…
Know that my insurance covers the Botox (after our deductable - of course) but only 75% of the facial physical therapy (which is actually way cheaper than the drug therapy) …
Gee – did my surgeon realize when the facial nerve was damaged in surgery that I would become a lifetime user of Botox? (Of course not he was hoping that “in 6 Months the face will come back- be patient!†… He did not count on the “synkenisisâ€.) Basically I now have a drug dependency – in a way- don’t I? Gee perhaps when the Botox stock dropped with the scare of pediatric use deaths- I should have invested ( ::) sorry sarcasm slipped out there as I vent a little :-\ :-[ )… I am questioning this whole pharmaceutically driven economy and medical insurance business…
There is a much bigger picture here.
Are medical insurance companies offering “vocational†rehabilitation? I know there is workers compensation for people injured on the job, which us AN patients were not, but what about programs for people who have to make mid-life career changes… often due to a new disability- be it hearing impairment, facial paralysis, physical balance? … What can be done to help them?
I know that there are societies that help people with this in Canada. Here is an example
http://vracanada.com/alberta.php
http://vracanada.com/
This is where people go for funding
http://142.236.54.112/eng/sc/cpp/disability/vocational_rehabilitation.shtml
Is there such a thing available here in the USA- specifically for David in LA?
This is all I could find
California
http://www.rehab.cahwnet.gov/
Oregon
http://www.oregon.gov/DHS/vr/
No- this picture is much much bigger.
Personally David I would like to see you on the silver screen bringing awareness to this “bigger picture†problem. If not on the screen then writing a screen play for others who can. 8)
Personally I would like to go for coffee with David, the members from my Oregon support group who have lost there jobs and insurance (one had to sell their house to pay the medical bills and move in with an aging parent) and Mike (my latte buddy who gives great HUGS) … We would have much to discuss. Mike I know would bring some light-heartiness to the serious discussion. A discussion that needs to happen and not be brushed under the rug...
David- I have been thinking about you a lot – since you posted.
HUGS
DHM :)
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DHM ~
Good post with some valid points raised.
I believe it's obvious that any large health care system will have flaws and generate 'horror stories' about patients waiting a long time for treatment/hospitalization and then receiving poor care or being shut out of the insurance system for reasons beyond their control. Its palpably apparent that - when it comes to health care insurance: there isn't a Utopian system. Most habitués of the forums are well aware of my hearty skepticism toward a government-run health care system, be it Canadian, European or Made in the U.S.A.
I do contend that a 'single payer' (government-run) health care 'insurance' system is inherently inferior to a system that uses the free market with some government cooperation (i.e. tax cuts) to help citizens pay for their own health care insurance. I'm an advocate of Tort reform and would like to see Medicare dissolved and citizens - of all ages - given an appropriate tax break to pay for their own health care insurance. I believe insurance companies should be able to sell their policies across state lines and I'm not against an insurance 'pool' - perhaps subsidized by the government - to cover the indigent or those considered to be poor insurance risks. I'm totally against government-mandated coverage that forces citizens (via financial 'penalties') to purchase insurance, basically, against their will. However, I would also hold people that refuse to purchase health care insurance - especially if it can be subsidized for the indigent - liable for any and all costs they may incur when treated/hospitalized - and uninsured. This is pretty much the way the U.S. system works, now. If you don't have insurance, you're treated in the ER (and possibly hospitalized) - and sent a bill. If you don't pay, you can be sued..and you'll probably lose. In some unfortunate cases, this is the basis for personal bankruptcies. However, as it stands now, the indigent (and, in some states, including illegal aliens) can be covered by Medicaid and/or state and local programs designed for them. Sadly, many of these folks often don't know this help is available . Fortunately, most hospitals retain a person charged with ascertaining the need and qualification for a person that might be able to avail themselves of the Medicaid program. This is in the hospital's best interest because it helps them to secure at least some payment for the services they've rendered to an indigent person. Clearly, the subject is complicated and fraught with misconceptions and, frankly, some hyperbole and posturing on the part of some politicians. Still, despite the political aspects that muddy up the issue, I don't believe it is preferable or even possible to shield citizens from anything that may negatively impact their lives, including the cost of treating illness or accident.
In the time before employment-connected health insurance, the individual paid for his own health care. If you went to the doctor for a check-up or to treat a medical problem, the cost was reasonable - and you paid it. Most physicians would, as they do now, accept 'time payments'. Hospitals did the same thing - and they still do, as I can state from experience. During World War Two, when wages were 'frozen' by the government, employers began offering 'medical insurance' as a 'benefit' to the worker, in lieu of more money and to induce people to go to work for a specific company. Soon, the 'benefit' became an 'entitlement'. Unions routinely included medical coverage in their negotiated contracts. Not surprisingly, non-union workers expected the same - and received it. By the 1960's health care 'benefits' were considered routine. The cost to the employer was within reason and workers depended on them. When the government instituted Medicare in 1965, this skewed the medical care economy. The government, seeing Medicare costs spiraling far beyond what had been predicted, which is almost always the case with a government program's financial cost projection, simply lowered the payments they offered to doctors and hospitals - and kept lowering it as the years went by. Because doctors and hospitals are not charities, they kept raising the prices they charged to those with private medical insurance, thus the $14. Tylenol pill you see on your hospital bill. The private health care insurance companies, meanwhile, demanded that doctors and hospitals accept lower fees from the private insurance companies. They agreed, but doctors and hospital staffs often became overworked and in some cases, the quality of care sank or hospitals simply closed their doors and some doctors retired early. The illegal alien situation in some western states has also been a big factor in causing hospitals to close. A hospital or doctor can't find, much less charge, an illegal alien using a fake Social Security number and fake name.
Right now, the situation could be greatly alleviated if we could return to the system where folks paid for their own medical care or insurance coverage and the government got out of the way. That won't happen. We've become an entitlement-minded society. The collective social philosophy seems to be that no one should ever be without anything. Health care has become a 'right', never mind that it isn't in the constitution and wasn't 'a right' until politicians began calling it one. I don't have the specific answer to the dilemma we now seem to be facing with heath care insurance and I realize we can't turn the clock back. I just wish we could take politicians out of the equation and deal with the issue within the private sector. Of course, I also wish I looked like Brad Pitt.
Jim
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Wow David ;) you have great material here for a dramatic movie script ;D.
Keep working at the physical therapy ... I am smiling and winking at you at the same time here. (The wink is not always intentional when I smile but I think you understand THAT part of synkenisis. Just so long when I am eating a restaurant, with my husband... men from other tables don't interpret that I am winking at THEM. ;) ;D ... Oh one of those inside synkenisis jokes the other coffee drinkers might not get. )
It's latte time Jim- beaN me up Scotty. :D
DHM
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Hi DHM
Yeah, even when the botox wears off the involuntary movements in the chin (the 'dimple') and large neck muscle are still negligible. My neuro is still injecting just to make sure the jolts don't come back.
That's why i reckon David shouldn't give up hope. The Synkinesis is the least of my worries now. In fact I wouldn't even classify it as a side effect anymore.
The main spot that needs improvement is the forehead - still not much movement up there! Even my smile is still improving... noticed a big improvement as early as last night. Pretty much back to a full smile now... although I am over 3 years post op now so you'd bloody well hope so!
Cheers
Simon
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Simon,
You are a year ahead of me... this IS encouraging news. :)
I agree with him David- we cannot give up ...
DHM
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Sorry to hear the news David it seems like all we can do with so many of the problems caused by our AN's is to try and make lemonade from our lemons.
I didn't even realize I had Synkinesis until I read this thread. My eye is dripping tears and my nose starts to run every time I start to eat. Sometime even just being hungry and thinking about food starts it up. Crosswired with the salivary glands...at the same time my mouth on that side is definitely drier.
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Pretty much back to a full smile now...
Thank God for posts like this one. They give us hope!
Sara at 15 months post-op and a funky half-smile.
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Sara~
Trust me on this one...you do NOT have a half smile - it is MUCH better than that!
K ;D
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A few weeks ago, Angie posted a very frustrated comment. Her PT informed her that synkinesis never goes away. Here all this time, I thought the nerves would rewire themselves somehow and I would be normal again -- it would just take two years of PT and Botox.
So on Tuesday I asked my PT if it would go away. I found out the ugly truth -- no it doesn't. It's permanent. It can only be managed with excersizes and Botox. That signaled the end of my acting career. That news culminated a pretty grim Summer of bad news and difficulties. I'm looking forward to putting it all behind me.
David
yep you got it, no beating around the bush, but results do vary everybody has a slightly different out come pete in GA.
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Synkinesis can be reduced, and in some cases, eliminated by either A) Botox injections, B) Botox injections combined with facial NMR and exercise, or C) Facial NMR and exercise. Often deep tissue massage and stretching is needed, too. For a facial PT to say to you that it will never go away is misinformed and that bothers me a lot. That is only true if you do nothing. Perhaps she meant go away completely in your individual case.
Success for each individual varies, and if it is severe, then the best that can be hoped for is a reduction in the severity. Others, and I would say the majority, can reduce it to a minimal or trace level (because is it is not usually severe in degree). Occasionally, but more uncommonly I will admit, it can be fully eliminated. As an example, a doctor I work with had Bell's palsy just before entering Medical School, had eye closing synkinesis with the usual lip motions. Now many years later, it is gone via simple exercises to keep eye open while moving lips with small effort (pucker, compressing, lip wrapping) and the "tincture of time". Admittedly, when he yawns, his eye closes a little, but that's it.
How do I know this? I am a facial NMR therapist, trained in part by Jackie Diels. I've seen it.
As others have said, don't lose hope! This condition is a marathon, not a sprint.
Todd
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well I'm surprised and also depressed because I have synkinesis I didn't know at first what it was, I called it a SNARL. :-\ but the more I read on forum I realized things were not right and now Im 3yrs out and still have.it. My Doctor told me 6 months it would go away. Long 6 months. I hope you can find peace with it, Ive had a hard time. Woman are different I guess about their looks. http://www.answers.com/topic/facial-synkinesis I found this site about it. Good luck , some day it might go away or they might find a cure. :)
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Hi Todd its anne from the bellspalsy information site, great too see you on here, i agree about the exercies, my eye area is less noiticable now after the exercies you told me too try. thanks again.
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Todd the eye exercises are working for me too!
I have been doing them twice a day. I try very hard not to involve my mouth, I started with massaging my mouth area then closing my eyes (the good eye of course closes first) I continue to look down and close slowly.
At first my mouth was involved at every movement then as time went on it happened only near the end of the closure. Once I would feel my mouth pulling up I would stop closing even if it was not closed all the way. I figure (help me if I am wrong Todd) that I would concentrate on strengthening the movement and then go a bit further if I could without the mouth pulling up. Here's that word I hate patience has helped and it is getting better.
Now why do I have a dimple in my chin that I never had before? I massage it and am not sure do I need Botox and where and who would I see for that?
Michelle ;D
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Im curious, has anyone had cosmetic surgery to help the synkinesis because call me vain but I dont want to look like this forever. three years now Im tired of funny looks and not being able to eat right, or even whistle. :( ??? LINNY