Can you beat synkinesis??

[HJY]

Hi All!
I'm 7 months post middle fossa. I had my facial nerve stretched and a quite bad facial paralysis. By six months I had back symmetry at rest and developed a tiny closed lip smile that had fair symmetry if I thought about it. My eye closure is good - only 0.5mm open on light closure and fully when I try hard! The strength still isn't there in my eyelid and if you push it open there's no resistance. I no longer dribble (yay!!!) - except with ice cream cones and soup! I just discovered the other day I can use my water bottle without holding my lips closed!!! Same with tooth brushing - I no longer have to hold it in! I've also had that lovely experience when you realize you can stand I'm the shower and let the water flood over your face without needles of water piercing your eyeball! I can also frown partly - which my physio said not many people get back. I'm at the point where people I dont know don't realize unless I tell them.
I am very aware that this is a fantastic recovery so far. I'm thankful but I guess you all can understand that feeling of looking back at old photos and then recent ones and feeling, "I know I'm better - but I want to be ME"!
I have two questions for those that have 'gone before';
1) When you got to the stage I have did you then find your recovery slowed? Was it gradual or in stops and starts? I know we're all different!
2) I've recently developed some synkinesis - when I purse my lips, yawn, chew or smile my eye on the AN side half closes. It also quivers quite noticeably when I do these things - particularly smiling. I also have the odd little dimple on the left side of my chin when I smile. So my question is - cab movements like these be overcome with facial retraining? Also my face hurts and feels tight. Is that just needing more stretching or did some of you have that before new movement?

I would so appreciate hearing about your experiences! I sometimes wonder whether I'd be getting better faster if I devoted more time to it - but I have a 9 month old baby and two other littlies!! Life's busy!!

Thanks so much!
Heather

[Brewers7]

I am working wth a therapist on many of the same issues, so please stay in touch.  Botox eliminated my chin dimple (at least temporarily).  Susan

[Jeanlea]

Heather,

It sounds like you are making good recovery so far.  I had no movement at all after surgery and got my first, ever so small, movement at 3 months. I got my most movement back around 18 months. It's been nearly 6 years now and I can make a pretty decent open smile now. I don't think most people really notice it. I was at my class reunion yesterday (30 years) and my classmates said I was one of the people who hadn't changed much.  So I guess it's not that noticeable.
I get that tight feeling in my face every so often. It always seems to precede my face gaining even more movement. There's even been a time when I had visible twitching in my face. I've never really done much of anything special to help my face except for possible massaging it occasionally when it feels especially tight. I did check out a website on Bell's Palsy where Jackie Diehl's has some exercises posted. The one I did was to put my finger on the inside of my cheek and my forefinger on the outside and pull it down.

Jean

[hannalou]

Heather,
I am in the same situation as you... I had some pretty good progress after the first 6-7 months and have now not felt like I have noticed any changes since then. And people that don't know me seem to not notice because at rest I look pretty good.  (don't ask me to smile or talk - cuz then it gets crooked) I am now 1 1/2yrs since my surgery and waiting to see more progress...I too, wish to get back my smile and see the old me in the mirror/pictures... I consulted with a surgeon about facial reanimation who told me to be patient and give it at least 2 yrs post surgery before making any decisions...suggestions on exercises or sites to help with this would be great. ...fingers crossed for us both..

Hanna

[HJY]

Hi Everyone!
Thanks so much for replying - shared experience and encouragement is so helpful! I saw my physio and he said I have a grade 1 synkinesis. He says he usually waits another 6-8 weeks(based on when I started to get most of my movement) before addressing any issues. He said the risk atthe moment with weak areas and muscles is doing exercises that will overdevelop one area in relation to another. It may ease one problem but create another. He said the treatment would consist of botox in certain areas to minimize Synkinetic movements (like eye closure) so you can 'get a rest' and learn to retrain it. He warned against any exercises at the moment - just very gentle movements while concentrating on minimizing the eye closing. I guess the issue is that each therapy plan is highly individual to you and where you are at. I'd be wary of a 'one plan fits all' approach! Maybe check out a PT or OT in your area?

Take care and may our facial nerves continue to prosper!!

Heather

[Dita]

Hi Heather,

I must say that your post actually made me cry. I have been so frustrated with my constant headaches and migraines that somehow I have forgotten to appreciate the luxury of closing my eye and eating ice cream without drooling all over me - something that I was not able to do just a few months ago. I am now 7 months post surgery and just like you I started to experience some synkinesis - my eye closes when I smile or chew. I also have a small dimple in the chin and the cheek and feels tender to touch on the side of the surgery. It is a little different every day and I am attributing it to scaring and healing that in case of nerve tissue can take years. So every day is a little different. I have noticed at times the progress seemed fast and sometimes nothing has changed for weeks.
I have also realized that people around me often don't even notice - my smile is still a little crooked. I work in the hospital and one of my fellow doctors offered to show me (for teaching purposes) one of her patients who had a classic facial paralysis. I had to laugh. I could give a lecture on this topic  .

I will keep my fingers crossed for you.

Dita

[HJY]

Hi Dita!
Thanks for your encouragement and your very kind words!!! Oh my! I had to giggle at your hospital story! That's great though as you must have recovered enough so that even medical professionals don't notice it! I'm a Speech Language Pathologist and have worked with neurology cases for years. I sometimes feel I need to go back and apologize to every patient with facial palsy I ever treated!!! I had NO clue what it was like!!!
I'm sorry you are suffering such terrible migraines - that's enough to make life unbearable some days. I have a meningioma that caused migraines for years. I would get hemiparesis with mine so they were pretty bad. I was on topamax for years. Then I had a major car accident, ended up in the spinal unit and before they operated they found out I was pregnant!!! I ceased topamax suddenly which can be very  dangerous. No migraines since that day - EVER!! One of Gods miracles for me! Hmmmm don't know of the definite healing properties of that scenario but you could try it!!! LOL!
My neurosurgeon says facial recovery often does come in fits and starts but can continue up to 18mths post. I know there are some here with recovery even 3 yrs later. That's great you have an open mouthed smile. My closed smile is getting wider and more symmetrical. Open mouth if u make it small I  can symmetrically show my front two teeth. If I go bigger than that it is very asymmetrical yet not disfiguring.
All the best and I hope those migraines settle!

Take care,
Heather

Ps - I also tried acupuncture fir migraines which was very good 

[psmix]

I'm 7 months post op and just started to get some tiny movement back about a month ago. Last week I saw Jackie Diels in Madison and learned a few things that sound similar to some of your experiences. She said that she sees some "life" coming back to most parts of my face. But as the nerves come back, my facial muscles have really tightened up, making my face look puffy sometimes, pulling my mouth into a little bit of a scowl, and making it difficult for my face to move. The muscles kind of cramp up, creating sore spots. She gave me lots of stretching exercises to do to keep the muscles looser and recommended heat.

She also said I'm beginning to get a little bit of synkinesis. When I try to pucker my lips or smile (which I can't do too much but the movement is just starting to come back), the muscle under my eye contracts and my cheek pulls up. I still can't quite drink without dribbling because the synkinesis causes my cheek to pull the corner of my mouth back. She emphasized the importance of very small movements, not trying to force anything. The goal is balance and symmetry.

For now, she wants me to just do the stretching exercises. As the nerve continues to heal, she said my facial muscles will continue to get tight and that I might notice it in different places. I should just try to keep up with keeping them loose. I'll see her again in six weeks and she said she'd be better able to tell then how quickly she thinks it's coming back. Eventually, she said she thought I'd be able to learn to control most of the synkinesis, but I had the impression it is something I'll be working on for awhile!

[hruss]

Hey Heather, Dita and psmix,

In a week I would have my 3rd year anniversary after the last surgery. I was like you at the beginning - my first movements in my face came back six months after the surgery. I did a lot of facial exercises pre and post the movement but haven't done any for a year or so now because after the 18th month post surgery there was no movement. I still can't eat ice-cream on scoops and always ask for a small spoon, I can't drink water from a bottle, I can only sip it and can't whistle. My eye moves every time when I smile, yawn, pucker my lips or try to squeeze my eyes because I don't close my eye lid all the way down.

I have noticed that during winter times when face is exposed to cold weather my muscles get tight. It is always good to keep your scarf wrapped around cheeks or if not possible to keep one end of it on your injured part. Well, the best advice is not to go out but I can;t follow this advice.

Best of luck in your recoveries! It is interesting to me that you started this topic and please post your updates!

hrissy