ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Debbi on January 25, 2010, 03:44:34 pm
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Well, it is almost 2 years post surgery for me (April 30 2008) and I am finally going to quit fooling around with my face and go turn myself over to Jackie at UW. I am set to fly out on Feb 14 (Happy Valentines Day) - weather permitting! I will spend a total of 10 hours with Jackie over a 2 1/2 day period. She is very confident that I can get significant improvement with the synkinesis which would be wonderful!
I thought it might be helpful/interesting for others with facial nerve problems to see a brief recap of where I started and where I am now. So here are some pictures - the good, the bad and the ugly (kidding!)
Me getting ready to get my bonnet off and leave the hospital - grade 6 palsy, right side:
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/52DebsNewBonnetlook2-1.jpg)
Here I am at about 5 months post op - you can see improvements
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/CIMG1294.jpg)
This is at about 1 year, 3 months (taken at the symposium) - I usually don't smile quite this big so the asymmetry isn't this noticeable most of the time.
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/815Debbiatsymposium.jpg)
Now, for the pictures that make me squirm a little - these were taken today and show the synkinesis in my eye and mouth. I willl post pictures again when I get back from Wisconsin and hopefully you'll see a noticeable difference! :) This is what happens if I blink my right eye (the good news being that I actually CAN blink my right eye!) The chin dimple, btw, is a bonus.
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/125SynkinesisUpdate001.jpg)
And this give you an idea what happens to my right eye when I smile.
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/125SynkinesisUpdate002.jpg)
Now, I want all of you to send some positive weather karma my way (think clear skies in NJ and WI on Feb 14), okay?
Debbi - here's lookin' at you, kid
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Best wishes, Debbi. I'm planning to see Renee Ivers at Washington University in the near future myself, and possibly Jackie after that.
Sara
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Debbi ~
I love it when folks are proactive with their recovery, as you certainly are. Good move! The pictures are informative (you've come a long way) and we'll all be looking forward to your post-Jackie Diels visit. I wish you nothing but success. :)
Jim
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debbi, do u have a gold weight in your eye?
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Thanks, all.
Sara. we should compare notes after our respective visits. I think we are very similar in terms of progress?
Jim, you are great - what else can I say??
Jazz, I had a temp removable eye weight for about 4 months, but can blink without it now. My right eye blinks about once for every 10 times the left eye blinks,so sometimes people are a bit disconcerted because I appear to be staring, but I think it is kind of funnY! :D
Debbi (keep sending the good weather ju-ju!)
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I'll keep my fingers crossed for great results for you, Debbi, although I already think you look amazing!
I do, however, have to question your sanity - who would willingly go to Wisconsin in the winter????? Maybe Steve better knit you a double layer hat and scarf to go with it!
Can't wait to hear how it goes!
Lori
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Debbi,
Best wishes as you get ready to head to Wisconsin!
For those of you who haven't met Debbi, she's absolutely as sweet, friendly, clever, and personable in person as she is in her postings here on the forum. I think she serves as a great role model for AN patients -- she has identified a challenge on her road to recovery and has devised a good strategy for dealing with it, displaying optimism and a great sense of humor all the while.
Is your destination Madison? My husband and I lived there for three years (he was in grad school at UW) and loved the town and campus ... but never fully adapted to the cold weather. I vividly remember a Halloween snowstorm and a Mother's Day snowstorm (not to mention the weather in between those two days!). There was sometimes a very brief thaw in January/February, so I hope you'll be in that timeframe.
Hope that the visit and consultation will exceed your expectations!
Catherine
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Debbi,
Best of luck to you in therapy! Hope it is a great success. Please, know, a lot of people will have their fingers crossed for you. Have a smooth trip, too!
Eve
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Catherine -
I totally agree with your assessment of Debbi; I couldn't have said it better myself ;D
Debbi -
as Jim said, you've come a long way. The changes in your pictures are incredible.
I'm hopeful Jackie will be able to help you improve even more.
Good luck - and please keep us posted.
Jan
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Oh, well, you guys ... shucks! :D
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Hi
I have seen Jackie too. She is great. It is amazing what we can do to train our brains to do differently. I am really disturbed by the lack of understanding of synkinesis by most of the medical community. I think it should be an automatic referral to see someone just like post shoulder surgery for PT.
Hope your experience is good too!
Polly
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Its been quite awhile since I've posted.
I saw Jackie too. I love her.
You look similar to me.
I am 5 years post. I think her suggestions are something that you can apply for many years.
I did botox too but stopped. It definitely helped my face but it just didn't last long enough and I
questioned the safety.
The good news is that 5 years post, I still have new sensations. I wish you the best!
Be well.
Mary
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You go girl !!!!
Anne Marie
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Well, keep your fingers crossed that the weather in NJ and WI holds - if so, we'll be flying into Madison on Sunday, just in time for a Valentine's dinner. And, then, at 9 on Monday, I meet with Jackie! I will post here when I get back. Thanks everyone for the well--wishes and all the encouragement.
Debbi (feeling like a teenager about to go on her first date...)
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Good Luck you'll love Jackie. I learned more from her than any of my doctors!!! Be prepared for the weather in Wisconsin in Feb. Let me know how the hotel is. We'll be going the 3rd of May. Karen
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Don't know about the weather in Wisconsin, but here in Illinois we're getting a boat load of snow :P
Hope everything's cleared away by the 14th, Debbi.
Jan
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My thoughts and prayers will be with you.
Best Wishes,
Pat
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Thanks, all! It looks like the weather on both ends of the trip are going to cooperate, at least on the outbound trip. So, with a bit of luck, we'll be having Valentine's dinner in Madison tomorrow night and I will be in Jackie's office bright and early Monday morning. :)
Pictures when I return...
Debbi
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Yeah! Looking forward to pictures! Hope all goes well.
I've heard Jackie's fantastic ;D
Jan
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HAPPY HEART DAY TOMORROW!
And good luck with your treatments.
Can't wait to hear the outcome.
Maureen
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Just a quick update after Day One with Jackie. We spent 5 hours with Jackie yesrterday - lots of work, but I left feeling SO optimistic! I guess I was really afraid, deep down, that she'd look at me and say that there's nothing to do. So when she told me that she believes alot of my facial movements are being causes by hypertonic muscles (which can be totally fixed) - well, I'll admit that I was closer to tears than I've been in a long time. The morning was spent evaluating my facial movement, taking lots of pictures and video. The afternoon was spent teaching me various "stretches" to start trying to work the knots out of my various facial muscles.
My head is so full of info right now, that I could probably write pages and pages (but I'll spare you.) I will update again either tomorrow or when we get back to NJ. We've got 4 hours with her today and another 3 tomorrow.
I am getting lots of pictures, so will be able to show you what we've been able to accomplish February. More later.
Deb
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GREAT news, Debbi! i have been on pins & needles wondering how it is going!!
K ;D
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Debbi,
Sounds like wonderful news! I hope the next two days continue the trend.
Catherine (JerseyGirl 2)
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Debbi ~
Thanks for the update - and the positive news about your facial mobility prognosis from Jacki. May the rest of your visit continue to be as productive as your first day.
Jim
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Debbi -
this sounds very encouraging.
I'm thrilled that Jackie had good news for you.
Looking forward to the pictures,
Jan
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Deb! GREAT news! I'm soooo thrilled this path is working out and can't wait for the updates!
Hugglez to you and Willie.... looking forward to the updates!
xo
Phyl
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Hi All-
Well, I am back and ready to share some pictures! The rest of the trip went very well - lots of hard work, but much to be optimistic about. Yes, I have some synkinesis, but the good news is that a lot of the facial contortion is being caused by tight and knotted muscles. And, those can be fixed! The nerves that healed wrong will always be wrong, but I will be able to dramatically minimize their effect on my face.
This trip has been such a good experience for me. I have been struggling with the sensations in my face for almost a year and a half, never really knowing exactly what it was that didn't feel good - or in some cases, hurt. Now, I know! And, no wonder my face felt sore - I have the equivalent of 20 or 30 charlie horse cramps all over my face! Sure explains a lot, doesn't it?
I came home with an hours' worth of facial stretches which I need to do twice a day (so two hours daily) and about 20-30 minutes of isolation movements for my lips and eyes. What is amazing is that I can already see a difference! Here are a couple of "before and after" pictures. These are taken 4 days apart, so you can see how much improvement I've already gotten.
Here is my eye closure the first morning in Jackie's office. You can see that my lip is pulled up and you might also notice some knotty looking spots in the muscle down the side of my neck (the platysma).
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/215gentleeyeclosure.jpg)
In the pictures from this morning, you can see a lot more symmetry and almost no pulling on my mouth!!
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/Feb192010GentleLidClosure.jpg)
Now, here is my "smile" picture from the first morning. You can see that my chin is dimpled and my right eye is tight. You can also see the muscle on the side of my neck kind of sticking up. That whole side of my face is pulling and tight.
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/215broadsmile.jpg)
And, now this morning! In fairness, I have to smile much smaller right now in order to control the muscles and to keep the rest of my face more relazed. But, with work, I'll be able to smile much bigger. You can already see alot more symmetry to my face.
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/Feb192010GentleSmile003.jpg)
Also notice in the before pictures that my right eyebrow is higher than my left. I wasn't even aware of that until we got started. That pulling is/was also caused by knotted muscles.
So it is fair to say that I am a BIG fan of Jackie's! This experience was SO much different that the facial therapists I've seen in the past who really focused on facial exercises. Jackie focuses much more on facial stretching which, in my case, really gets to the root of what is going on.
If anyone reading this wants to know more about the specifics of my time with Jackie, just PM me - I am glad to talk on the phone, email, or whatever.
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Holy cow! That is amazing! I'm so happy for you Debbi.
Ugh, now I may have to go to Wisconsin myself. I'll wait until the snow is gone though. I wonder if she'd prefer to come to Virginia Beach for an all expenses paid vacation...
You looked great before, but it must feel so good to have your smile back!
Keep smiling!
Lori
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Debbi, You really can tell the difference and I am very happy for you! Very good pictures and good that is being such help to you! Jackie is a sweetheart and how she gives credit to the patients for the work it takes.
Cheryl R
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debbi
As gorgeous as you are, even before your trip to Jackie.... what a testimony of her work! You look stunning now... (you looked stunning as well before), but so thrilled to see that the trip has paid off!
thanks for sharing these pictures. A true inspiration for others seeking info/help with this issue.
Phyl
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Very nice, Debbi. Great report and I am so happy for you. I plan to see the facial physical therapist in St. Louis, but a summer trip to Wisconsin might also be in the cards.
I don't have the mouth pulling up when I shut my eyes, but there is lots of room for improvement with my smile.
Sara
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Wow Debbi- Amazing differences in the pics- I can't imagine how in four days your face turned into a buddha at rest- congratulations! Beuatific! I'm so interested in it all and really want to know more! Talk to you soon
Nancy
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Debbi,
I can only say that you look stunning and beautiful after your sessions!! It really is amazing, and I am glad that you had such great results.
I remember feeling like my face was a pummeled piece of meat after visiting Jackie, but it sure makes a difference. i don't know that I have been very successful at changing my synkinesis due to impatience with sitting and meditating in front of a mirror, but the stretching exercises continually help my face, especially as my face continues to change over time. Different parts seem to come to life and thus get newly "cramped". Having had training allows me to focus on that new area to keep it relaxed as it comes in.
Thanks for sharing the pictures!!
Samantha
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Debbi,
The difference in the "before" and "after" pictures is quite dramatic !! You look great, and I would say that your journey to Wisconsin was very worthwhile.
I'm sure that these good results will help you to stay very motivated to continue the stretching/exercise routines -- best wishes as you proceed!
Catherine (JerseyGirl 2)
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Thanks for all the votes of confidence!
Samantha, I know what you mean about feeling like a pummeled piece of meat after 3 days. I am pretty sure I actually bruised the inside of my cheeks. I was probably being a little over-aggressive when it came to squeezing and pushing. Still, the results are worth it.
What is interesting is how much more aware I am now of what my face is doing and how it feels. I had to run some errands today and notices as I was driving that my cheek was getting progressively tighter - when I looked in the mirror, sure enough, lip was pulled up. However, by concentrating on relaxing my face, I was able to get my lip to drop and my cheek to relax. Really amazing.
Debbi (with my little Madonna-like smile)
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Debbi, I bet you really like that last picture. It is quite amazing! Maybe it is time for a new profile picture? ;)
Great news, I hope it continues.
Steve
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Wow, Debbi. Amazing. You've given me hope.
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Debbi -
all I can say is "wow"! What an amazing difference.
All this in just a few days time.
Truly incredible!
Jan
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Debbi, I echo all these comments. I truly appreciate all the details and photos you have shared here and on your blog that document your journey. You are leaving quite a trail of breadcrumbs!
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Debbi ~
Although I'm at the tail end of a string of well-deserved compliments regarding the visible improvement in your facial control, my compliments are no less sincere. I realize that what you've accomplished is due to hard work and intense concentration and I'm delighted to see the positive results, although likely not half as excited as you are! Kudos to you, Debbi for your improvements and thanks so much for sharing the good results of your therapy sessions with Jackie Diels. I'm confident that you've given many people struggling with post-op facial issues much hope and inspiration.
Jim
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Thanks so much for all the encouragement! Faced with 2 plus hours a day of facial therapy, I definitely need to keep myself motivated and you've all helped me a great deal!
I will post more pictures here as things progress. I am very happy to report that most of the sore spots on my chin are almost gone - first time I've been able to touch my chin in a long time that it hasn't felt like there is some big icky subterranean pimple under there (sorry to be so graphic, but that's just what all those spots on my face feel like!) My cheek is till tightening up during the day, but its a bigger muscle and will take more time to "de-cramp."
Debbi
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Debbi,
The photos are truly amazing. The before and after from just ONE day- priceless.
Thanks for sharing.
This just shows how you may "look" ok (to us you look great), but what you are feeling is hard to describe to others.
The symptoms you were describing prior to seeing Jackie- Yikes, I had no idea.
Keep up the good work. Go Debbi, GO!
You will need a cheer leading team because two hours a day is a lot of time, especially with working and such.
Keep it up :) :) :)
Maureen
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Hey Deb
You look great! Every time I read your comments, I think of my self. We are so in the same boat. From the same Doctors to the
same Facial therapist. Everytime you touch my chin, I feel like there is a zit waiting to happen. When I explained this to the doctor he said
he never heard of this. My cheek muscle is pulling so tight that He suggested I go for botex. I would rather try something else. You look great
and give me lots of hope as I approach my 1 year mark. (I was also told this would only last a couple of weeks after surgery) Now its is almost
a year later and the facial therapist put me at a 3.
Looking forward to talking to you soon.
Marybeth
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Those pictures speak for themselves! Fantastic!
I think we have very similar issues. My face feels like a Charley horse all the time. Especially the cheek and it hurts~
Can you tell me a little about the chin and cheek work you are doing?
Thanks!
Amy
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Thought this would be a good time for an update. First, for those who expressed who secretly shuddered when I mentioned 2 hours of facial stretches and another half hour of exercises - I am now doing 1 to 1 1/2 hours of stretches (two sessions of 30-45 minutes each). Most I can do while I am watching TV, so it goes pretty quick. I have had to establish a routine around this, otherwise it wouldn't get done. So, each day starts with stretching the face, and that is also how each day ends. Not so hard at all!
What is most noticeable to me now is how much BETTER my face feels! I guess that I had gotten so used to the constant tightness and soreness that it didn't even really register anymore. Kind of like any other very low level pain, you get used to it. Now, however, I am starting to feel my face loosen up and it just feel so good! My forehead has gotten much better, only a few sore spots left and that eyebrow has dropped considerably. Only one sore spot left on the chin. And, my cheek is slowly coming un-cramped! ;D ;D Wow - this is what "normal" feels like!!! I am also starting to see some small improvement in the neck tightness. That's a hard muscle to stretch, so it will take awhile.
I've emailed Jackie with a few questions and she has been great about getting back to me with encouragement and suggestions. She's really terrific and I can't say enough positive things about her.
Amy, to answer your question, alot of the cheek stretching involves getting several fingers of one hand in that side of my mouth, while keeping the thumb pressed on the outside. By gently pinching the cheek between the thumb and fingers and pulling down towards the mouth, I can get a good stretch going. I do that all over the cheek area and stop and hold when I feel a thickening or feel a sore spot. Right now, my right cheek is still much more dense than my non-AN left side, but I am seeing changes. As for the chin, what i do there is press forefinger at different spots on the chin - whenever I find a sore spot, I just press and hold until the soreness subsides. I'm also spending a lot of time on the long muscle that runs down the front and side of the neck since it pulls the chin and mouth down.
Slow and steady wins the race... Yes, yet another hard-won lesson in patience for one of the planet's most impatient people!
Debbi, working on my grin...
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Debbi ~
Fortunately, my grin works pretty well and I'm using it now as I read your post. ;D Thanks for the update and the great news within!
Jim
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Debbi,
Reading this thread today definitely made me smile. I can't wait to see you at the next brunch in May.
;D
Neal
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Debbie,
I'm new on here, so forgive me if i missed anything. You had facial therapy? How long was it until you were able to have some symmetry? There is a facial therapist in Pittsburg, about 4 hours from me. I went to see him once and drove home in such a terrible rainstorm, that I was afraid to drive out there again. Can you give me some information on the therapy? He had put things on my face that was hooked to a computer to measure any movement. He also said that I do have movement, it's as if the nerves are asleep. Maybe I should try to go out there again. ???
Mary Ann
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Quick update --
First, in case you are wondering, I did not ignore Mary Ann's questions ;D, just answered her privately.
So, it's been about six weeks since I got back from seeing Jackie and I must say that I am VERY pleased with results. We were having dinner the other night and Willie looked at me and said "you know, I haven't heard you slurring lately." Holy cow!!! I've been slurring for nearly two years so that's a big deal! I still do have a slight tendency to slur if I am very tired, but nothing like even two months ago.
I am also seeing improvement in how my lower lip is moving (yay!). And, my cheek is definitely starting to relax, which means that my snarl is getting smaller. I think I am even seeing some slight lines on that side of my forehead (I know, what woman in her right mind is excited about wrinkles!!) The chin is still dimpling like crazy, but I am working on it and practicing patience... my mantra.
I promise to post pictures again soon - just wanted to let those who are following know that results have been all that I had hoped for (and more!)
Debbi (smiling)
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"When you're smiling, when you're smiling, the whole world smiles with you !" GREAT NEWS Debbie, I'm so happy for you !
Always good thoughts, Nancy
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outstanding!! :o)
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Debbi - Thank you for posting your experience with Jackie Diels. I'm looking forward to my appointment in July. My surgery was 2-1/2 years ago and my face looks normal to most people. But I still have the same issues you have with the "sneer" and the way my right eye closes when I smile. There's also a general tightness on the entire right side of my face and my neck muscles are affected as well. People don't understand how these issues affect your life and confidence level. The attitude I'm finding is - "you've come so far, why don't you just leave it alone?" I wonder if they would think that if it were their faces?
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Just a quick update ... Yesterday my parents arrived for a visit. Have not seen them since Christmas. They took one look at my face and said "wow! that's amazing!" They said that they see a huge difference in the way my mouth moves now when I talk. And, the other day, I was able to keep the right side of my mouth from gaping open when I was eating - that's HUGE!!! ;D
I'm a happy camper.
Debbi
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Debbi - I just saw this thread - thanks - the pictures and story are great -
I will like to do a similar thing post treatment to help others with their fears. I am finding more often than not that this forum is my greatest source of support right now.
take care~
Nancy
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Debbi, You deserve to be a happy camper too since you have been doing the work to help it along! Have a good family time. I met my sister after my appt Tues as hadn't seen her since Dec as we met in Iowa City and had a nice visit. She is a hour away from there.
Cheryl R
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Rather than starting a new post, I thought I'd just add to this one ... I just returned from my second visit to Jackie this week. The progress has been terrific! I have no more pain in my face and most of the spasms and hyptertonicity are gone, gone, GONE! ;D ;D
This trip was 2 days, 5 hours the first day and 3 the second. Started with an evaluation to see what had changed since my last visit in February. We then started doing some "fine tuning"... I still have a little bit of spasm in my neck and forehead, so am doing some additional stretching work on those areas. My cheek has almost completely settled down so there is very little pulling up on that side of my mouth now (yay!) I have made very good strides on the synkinetic movements (chin, mouth, eye) and came home with some new stuff to do to continue retraining those muscles. What really surprised me was how much better my right eye is now. When I was there before, that eye would try to close every time I moved my mouth - talking, eating, etc. Now, the eye is staying nice and wide almost all the time. I can still feel some pulling on my lower lid, as if that little muscle is still trying to make the eye squint up when I talk or eat, but it is SO much better! I am learning to control the chin dimpling very well, too.
I wish I had not waited quite so long to go see Jackie. However, I am thrilled at the progress. Don't believe me? Take a look...
Here is what I looked like in February when I closed both eyes (the right eye still doesn't always fully close)
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/215gentleeyeclosure.jpg)
Now, here is the photo that Jackie took this week with the eyes closed...
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/Eyeclosure2928.jpg)
Here is what happened in February when I tried to do a closed-mouth smile...
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/215closedsmile.jpg)
And now in September...
(http://i280.photobucket.com/albums/kk167/debifulco/AN%20Pictures/Smallsmilelipsclosed928.jpg)
By the way, I am 2 years, 5 months post op. I hope that this helps some of you out there who are trying to deal with facial problems and synkinesis. NMFR works, BUT only if you work at it. For me, the results are worth every minute of the work!
Debbi
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Debbi ~
I tend to be a bit fairly O. K., relentlessly verbose sometimes but your 'before and after' photos prove, unequivocally, that a picture really is worth a thousand words.
The improvement is startling, you look fantastic and are a real-life inspiration to many AN patients struggling with facial issues. Your determination is also awesome and a key factor in reaching success. Well done.
Jim
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Debbi,
Congratulations on your amazing progress -- you look great!
Catherine (JerseyGirl 2)
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Debbi -
You look amazing!!!! Glad you had a good trip and so glad you've had such great results!!!
Now I'm going to continue chuckling at Jim being a "bit" verbose.... ;)
Lori
Lori ~ I fixed it. Jim
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Looking fantastic, Debbi ;D
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Wow! My sister had facial paralysis due to a non-AN issue. It's been many years since then. She had a nerve graft and some kind of retraining, but doesn't have as much improvement as you. I think you look wonderful!
Nancy
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Thanks, everyone. I really do believe that facial therapy, with the right therapist, can work wonders. I went to 2 other facial therapists before I finally made the decision to go see Jackie. And, all I can say is that what Jackie does is completely different than what the other two people did. This is not to say that there are not other great therapists out there, but if one therapist doesn't get the results you want, maybe it is worth trying another. And, of course, none of this works without a commitment of time.
I was very reluctant to start down the botox road, even though I know it is effective for some people. For me, the thought of having to commit to botox for potentially the rest of my life just wasn't what I wanted. So, spending the time working on my face without knives, needles or drugs was worth it for me. Again, a personal choice.
And, now, I am off to work my face! ;D
Debbi
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Wow, that is fantastic!
Neal
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Oh Debbi .....
What an inspiration to see the before and after pictures! What hope it gives to others with facial issues! Thanks so much for sharing these very personal pictures.
Clarice
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Debbi,
Wow is right! Hard work but worth the effort and $$$. You look GREAT.
Thanks for the before/after pics!
Maureen