ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Eleanor Rigby on October 19, 2009, 11:17:11 am
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Hello everybody,
I have to state I am not AN patient but I have much in common with those of You who are afflicted with synkinesis. This is very annoying and stressing consequence of facial paralysis, too, as in my case. I am struggling with it more than two years and many times I feel very lonely because I do not know anybody in person who has the same problem. I live in Slovakia, central Europe, there are no specialists for facial neuromuscular retraining. My only source for information is internet. I get botox for synk but its effect lasts very shortly, usually 3-4 weeks, then the synkinesis returns. I know there are people with much more serious affliction and I am grateful that I can see, eat, drink and also speak without much effort which was not the case during my illness. But anyway, face is the window of the soul and everybody is much more sensitive in issues of the face. How are you coping with synkinesis? Does it affect You for example in speech? When I am speaking my lower eyelid twitches and the upper eyelid has the tendency to close. That distracts my attention and I cannot concentrate on what I want to say. So I feel sometimes depressed. I hope I will be sometimes able not to notice these unwanted movements of my face. I realized this is a condition in which I should live for a long time, if not for ever. But I am following very closely all the progress in neurology field especially in peripheral nerve regeneration and I still hope that in this era of groundbreaking innovations, nanotechnology, genetics, molecular engineering etc science will find some cure for this underestimated because relatively rare condition. Maybe we should be more organized and articulate more loudly our problem like the patients with MS for example. I am very glad to find this forum, anyway. My name is Elinor, I am 57 years old, a senior lecturer at a college. I am grateful for any reaction. My best regards
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Hi Elinor (great screename/great song!) and welcome to the forums. I have customers in Slovakia but have not been able to visit there! I hear its lovely there. :)
I hope you are able to research some of the different options folks have tried here that have worked and haven't. I know of many that may be able to participate in this discussion and I know there have been past discussions about this as well (if you go to the forums home page and do a "search" option on the top left). Do you also have the ability to travel to the UK or W. EU if there are medical opportunities there to try to help your situation?
Again, welcome.... and I hope others are able to provide insight so you can find some answers.
Phyl
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Hello and welcome, Elieanor Rigby ~
I'm sorry to learn that you're dealing with synkinesis - and have become a bit frustrated. I agree that the issue deserves more public attention and research, which often only comes with much publicity. I don't have synkinesis and so, I can't offer any answers but I'm pleased to learn that you've decided to visit and post here. I trust you'll continue to find the forum of interest to you.
Jim
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Hi Elinor~
I don't really have synkinesis but just wanted to welcome you into our happy, little group!!
K ;D
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Hi Elinor and Welcome to our group,
I started having synkinesis just a few months ago so I understand your frustation. It is really a distraction when you are trying to focus. When I smile,drink, or do anything with my mouth my eye twitches, when I try to shut my eye (just getting a bit of movement back) my mouth pulls up and my chin twitches. It's all so frustating. Neuro-muscular retraining is really helping me. I am wondering if there is some way you can get a therapist to work with you via the internet. With web-cams and such they could see your face and give you some advice. I know it's a long shot. There is also several websites that show you massage techniques etc. that really help but it would be hard without professional feed-back to tell you if you are doing it right. I'm sorry I'm not much help but I do understand your sadness and frustration. You will find lots of support here. I hope someone has some answers for you.
Julie
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Hi Elinor,
I just started to experience synkinesis about a month ago, a month after my face started to get some movement. So I went from being elated that my face was starting to move, to disappointed that it was moving in places in shouldn't! I didn't realize it til my husband said "hey you have a dent in your chin". He was right, I get that when I smile. My cheek also bunches up and my mouth pulls down when I raise my eyebrows. My eye tries to close when I yawn or open my mouth wide.
I have not seen anyone for neuro-muscular training yet, I'm waiting on a referral now. My surgeon lives 4 hours away and he suggested I see his facial physiotherapist once, and learn how to do the exercises and then from there do them at home and via web conference with the physiotherapist. Maybe this could be an option for you?