ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Kristena on December 15, 2013, 11:25:34 am
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I just hit 6 months post surgery, and I would love to hear others' experience with synkinesis. I had nearly complete facial paralysis on the right side, then about 2 months ago I noticed very slight movement in the apple of my cheek. That totally made my week! Now I can make a slight closed-lip smile and match it up with my good side just in time for Christmas. I'm not afraid of pictures anymore!
However, almost EVERYTHING I do shows some synkinesis. My eye squints when I: smile, try to raise my eyebrow (no movement there), pucker, snarl, look up, look right, open my mouth wide, swallow hard (weird). The corner of my mouth raises when I: try to raise my eyebrow, blink, try to close my eye, snarl. My neck tightens up when I do a few things too. My facial therapist has had me stop all exercises other than various massage techniques 2-3 times a day and trying a few "mind over matter" relaxation exercises.
I know everyone's different, but in your experience, do these lessen over time, can I expect more to develop, will I require botox for the rest of my life, etc? I know I'm really early in my recovery, but I need to get a handle of what to expect now so I'm not overly hopeful. I'd love to hear the experience of others. Thanks!
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David Shannon (known as LADavid on the Forum) has synkinesis. Search for his posts; you may find them very helpful.
Also, he wrote a book about his AN experience (called something like Hell in the Head) where he goes into detail about his AN Journey and his synkinesis. I think you'll find his book on Amazon.com
Best,
Jan
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I have synkinesis. I no longer find I think about it, it just is. I notice it mostly in photo's (which are a rare thing 'cause I hate having my picture taken now)......sometimes my face pulls so tight it hurts, massage helps.
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My right side of my face was totally paralyzed after my surgery and a week before my year anniversary I regained a lopsided smile. I have some synkinesis too, when I smile my eye closes a bit. My therapist gave me excercises to do, but truthfully I was unable to stop it and I stopped the exercises. I now see it as just more movement in my face, I try to be positive about it, that at least it is movement. I do not believe it will lessen with time, but it hasn't gotten worse and I am 2.5 years out from surgery now. I had been told that recovery can take up to 2 years, so a smile at 6 months is very positive, hopefully you will regain more : ) I don't think I would ever do botox, unless the synkinesis became so tight that it didn't relax on it's own. So glad you can feel good about your smile and getting your picture taken again. Be well.
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You can look at www.bellspalsy.ws Under the facial retraining link is a area which talks about synkinesis. The facial retraining link is written by Jacki Diels who is well known for her facial therapy. One does always have to keep at some work on it to keep it from coming back. I also have some on my rt side and do not keep at it. I hope this helps. Cheryl R
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The ANA just presented a great webinar by Jackie Diels, very well known therapist in facial retraining methods,,you can now access it from the home page if you are a member of ANA and have a user name /password for the member section.. I attended the webinar in Nov. when presented and it was wonderful, very informative material.
She has a power point presentation in addition to lecture info and shows how the facial muscles and nerves interact along with some basic Q & A at the end..
I think it would be helpful to anyone dealing with facial paralysis and recovery. One thing I will say, it takes vast amounts of patience and time for this part of recovery,, there is NO rushing nerve regeneration ,,,I found gentle massage and small attempts at movement for first 6-12 months was best for me.. I was told 12-18 months for regeneration and found that to be on target.. I am just over 2yrs in recovery and still seeing changes..I had gold weight in eyelid for first two yrs and had it taken out last Oct,, I have mild synkinesis but manageable for the most part,, good luck to you,, just be patient and don't force any exaggerated movements ,, ,, my non-medical advice,, for what's its worth :-\
Jane
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Kristena-I feel the same as you about so many things, but we must keep hopeful and proactive in seeing doctors and therapists…… I have had botox twice; I go back to the plastic surgeon early January. Truthfullly, the tightness lately makes me crazier than not hearing and head fullness. I too have been a little lax about doing my exercises and other issues in my life have come up so I haven't seen my facial therapist in several months although I did have my implant for the BAHA. I have some computer incompetency so I have had trouble accessing the Jackie Diehls webinar but as soon as Christmas is over, I am tackling that problem.
Meanwhile, I massage my face and do some exercises but stress and being tired definitely affect it. I believe that since I am better than I was after surgery I will continue to improve. Yes…mind over matter!
Merry Christmas, Mil
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Thanks all for your insight. I'm not an ANA member, but I may have to look into that and David's book. I've been so busy at work, and of course with all the holiday planning, I haven't really taken the time to concentrate on myself other than the 2x daily facial stretching. But I have the next two weeks off(!), and I plan to spend a lot more time relaxing with warm, wet rags, doing massage and yoga, etc. But some of it I just can't avoid--like licking my lips, or drinking water. My eye gets really squinty, and I've developed crows feet all around the outside. I will do what I can, and the rest I'll just have to accept!
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I'm one of those annoying success stories...very little paralysis post surgery and rather quick healing, but I, too am stuck with the eye-closing thing when I smile. I'm working on it though as I can't afford the chunk of change it would cost to have an appointment with Jackie...
But I HAVE come up with something that's helped me a bit with the "tightness" in my cheek though. It's unorthodox but for me it's helping. I dampen a wooden spoon (one of the more narrow ones) and insert it into my cheek with the rounded convex side facing out to my cheek - and push outward gently - also I can then "trap" my muscle and skin between the spoon and my fingers and "massage" my cheek pulling it toward my mouth against the direction of the muscle pull. My cheek has an every so slight pull into a grimace sort of smile and it's bothered me. You can't see it if you're looking straight on, but if you tilt your chin downward in a mirror and look DOWN on your mouth from above you can see how it's pulled back or not. I found out the hard way to dampen the spoon, as it sucked all the saliva out of my cheek and I actually removed the top layer of skin onto the spoon! EEEK! It thankfully didn't hurt (I was pretty surprised at how few nerves must be inside our cheeks....) But if it helps anyone else - have at my spoon method!!!
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My eyes are OK. I have a lopsided but decent smile. Huge chin dimple though.
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Jackie has people do something similar by using ones clean thumb for inside the check and then the fingers for the outside face area and pull together on an tight area 10 times. Then go to another area and do the same till areas which need it are done. She also says to use warm packs on the tight areas. Being out in the cold does not help this time of year too.
Cheryl R
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Jackie has people do something similar by using ones clean thumb for inside the check and then the fingers for the outside face area and pull together on an tight area 10 times. Then go to another area and do the same till areas which need it are done. She also says to use warm packs on the tight areas. Being out in the cold does not help this time of year too.
Cheryl R
That's where I got this idea - I felt if I could get a better "grip" on the muscle I'd be able to work it more. The wooden spoon gives me that ability. I also noticed that the inside of my cheek would get sore if I massaged it against my teeth, and the spoon protects against that problem as well.
Pam
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Pam,
Love the spoon idea!! :P I am going to try it and see if it will be successful for me also in relieving the occasional tightness...clever idea,, I have used my fingers and massaged my cheek over the years but this sounds much more entertaining ! :P thanks and you look mahhhvelous from your photo,, maybe I can acquire as pretty a smile too!!! ( and the baby is a doll also !)
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Alabamajane -
You made me realize it's been over a year since I put that photo up! Needed to update it! This new baby is my oldest daughter...and this was taken at the airport at -9 degrees! And my face wasn't frozen! LOL! My grandbaby is so much older now! I'll have to try and find a photo I can share of the 2 of us....
Hope the spoon works for you as it did for me - gave me some leverage to pull out the tightness....but if those muscles keep pulling it in, you'll be doing it all the time. I'm working on NOT pulling muscles I don't need to pull...but it's hard to do! I remember when the smile wasn't working but I was "feeling" the beginnings of muscles working....never looking in a mirror, just remembering how it felt to do it right.
Pam
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Looks good and very hard to tell affected side,, even in freezing temps! Lol
I think the take away here for Kristena and others is that it does take time, patience and gentle movements,, in my opinion,, for what it's worth,,, I don't look in the mirror much either,, prefer to think about what I want my face to do,, like was said,, mind over matter ,, will it to move,, I believe too much early intervention is more harmful and can cause more synkinesis than letting nerve heal and gently "coaxing" it back,,,like you said just try to remember what you want it to do ,, ,best of luck to all of us ,,stay warm!!
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I did buy the book and read it in one sitting! Thanks for the suggestion. It was so nice to be able to see photos of others with "crooked smiles." I have been working with a facial paralysis "expert" since early on, but of course I'm wondering now if I had done nothing if I still would have had the synkinesis? It's just so hard to be patient--you think you should be doing something to help it along. So, now my question is, do some people really do nothing and still get synkinesis? I'm afraid it was due to my "eye squeezing" exercises when my eye would only shut partially. Or when putting in eye drops (all day long), how the side of your face automatically wants to squint. Of course I'm not blaming my therapist--she really only had me work muscles that were already active--but I'm wondering if the message is truly to do as little as possible, as hard as that is. Thoughts?
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had translab for approx 3 cm an in june 2005. everything that could go wrong did. i have been chasing multiple issues and great pain ever since. have synkenesis headache major eye issues and balance probs. post 18 and a half surgery, sprung csf leak etc and was in hosp 10 daysflat out and monitored every which way. 9 years post surgey still chasing for some comfort and normalcy. for the last 5 years have gotten botox injections every 3 mos, corticosteroid shots in trigeminal nerve every 2 mos and cortico steroid (kenalog) shots to eye for trochleitis every 3 mos. worked fairly well for this duration. kept pain level at about 4. annoying and hurtful but manageable. uh oh, suddenly shots arent working so... sought out other ways to deal. went jan 14 and had gammaknife to kill part of trigeminal nerve. worked like magic and restored symetry to face but in chain reaction made eye worse and jaw/teeth (what few left) very bad. has caused serious eating problems and much pain. 2 days ago had my last bottom molar extracted (infected under jaw) to prepare for a 2 year grueling jaw grafting reconstruct. seems the prolonged use of cortico steroids detereorated the bone way too much. almost nothing left. also on steroid drops for eye. apologize for typos but, cant see too good. go may2 for the final consult with oral maxillofacial surgeon and will get my first surgey date and a clearer picture of what will go on now that the last ifected molar is gone. also still working on trying to find out what to do with eye. eye surgeon not sure if there even is anymore that he can do. panicky afraid and sooo underweight and little to no support due to lack of understanding from my significant others. i am breaking more than i was already broken. tried back when to form a support group in my area but, ana angered me by saying the numbers in my area did not warrant one at that time. contacted veda too but they did not respond back as they said they would. on the up side, went back to neuro balance therapy and am doing better in that area. dont fall as much and learned new techniques.however, after the gammaknife got 2 new sounds that occur randomly and one is so bad it knocks me on my butt literally.( always have random electronic type sounds in head since 2005) feeling for the first time very weary of chasing and thinking for the first time that maybe i should not have even had the surgery and just died in 2007 like the docs said i would. scaring myself. its all so complex and overwhelming. if someone out there knows the name of that book and author so i can get it tell me please as i am desparate for someone who understands this hell. also if any of you on the forum live in lackawanna county n.e. pa. please contact me as i would like to talk about things. desparate at this point because no understanding even after 9 years. sooo tired of chasing my own tail. anyone have words of wisdom?
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Both an ENT facial nerve specialist and a facial physical therapist told me that some synkenesis is inevitable. But the facial nerve specialist also told me that not forcing movement too soon would minimize it. In my case, the result after 5 years is that I do not have eye problems when smiling or eating, but I do have a huge off-center chin dimple when I smile and the smile is not symmetrical. I could probably do something about the dimple with Botox but haven't investigated that yet.
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I know my eye problems are from my attempting to "make" my eye make tears. I'm a former contact lense wearer and had/have dry eyes - too dry to easily handle contacts. So what I would do is a sortof "squinch" of my eye, and they would produce tears. A couple months of doing that laid the foundation for synkinesis....but it's not horribly bad - I just don't like it! Vanity. My family tells me it's "cute" that my eye shuts a bit at times....
Pam
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KerriLynAngel, I am so sorry to hear about all your issues. Sometimes the best part of my day is taping my eye shut and going to bed. :( I wonder if the hospital where you had your surgery could find a support group for you. I recently received a mailing from a group for a seminar for people with various brain tumors and cancers, so it wouldn't have to be specifically an acoustic neuroma group. Hopefully they can put you in touch with someone to talk to. In the meantime, we're all here for you!
The book is called, "Hell in the Head: My War with a Brain Tumor and Other Evil Things" by David Douglas Shannon. I bought mine on Amazon.