AnonymousSeptember 14, 2012 at 8:21 pm
I had GBS in January of 2008. I was walking by October 2008. Knock on wood, besides a slight numbness in my feet, I have not had any other problems. Heres the thing though…my face was paralyzed too and here it is, 4 years later, and it never really went back to normal. I still cant smile normally. My lips just wont curl up. When I try to smile by showing my teeth, all that is visible is just the bottom part of my front teeth.
I saw my neuro yesterday and of course, he said he has never ever heard of this happening. So, he cant help me out. He suggested maybe a plastic surgeon and that maybe they can do something with the nerves???
Is there anything I can do? Anyone I can see or am I stuck like this for the rest of my life?
This has a terrible effect of my confidence!! Any help would be great!!
September 14, 2012 at 11:42 pm
Weakness of facial muscles occurs in about 50% of GBS cases, according to Parry and Steinberg. Recovery varies, as with GBS generally, and P&S do not discuss this.
The plastic surgery idea sounds goofy to me. I’d say the neuro got it from the Batman movie (Jack Nicholson as The Joker).
AnonymousSeptember 24, 2012 at 12:15 pm
I’ve got partial paraylsis on the right side only of my face..it’s been 7 years for me since contracting gbs..my nuerologist at the time told me it would only get worse with time…but it has really stayed about the same..doesn’t really bother me..I never looked like Tom Cruise anyway..lol..
August 13, 2014 at 7:23 am
Facial paralysis is a clause where one side of the face gets paralyzed. Typically the condition is of sudden incidence, one fine morning when a person gets up he will notice in the mirror that his mouth angle is deviated, he is not capable to close one eye, tears flow unrestricted from his eyes. Later on he may notice dribbling of saliva from mouth. As the eye lid is paralyzed, patient must utilize eye protection shelter as sleeping, it will guard the eye from injury and disease.
October 8, 2014 at 3:42 pm
I hope these anecdotal descriptions are being summarized somewhere in a medical symposium, so the rest of us with similar conditions have an approximate idea what to expect with our own prognosises. Any updates from gyro1 or crlyn324 ? The Internet is full of one-time “help” requests for which you don’t get any follow up. In my experience, once a person has a success story, the urge to update earlier posts just vanishes and the rest of us Googlers are left hanging.
January 17, 2015 at 5:54 am
My lower-left lip decided to retire. So, when I eat I chew with my mouth open and some food is bound to escape my intent to digest it. It is awkward, and I find that I am not as good a kisser, as I was pre-GBS. From what I recall, it has to do with complications/damage of the amazingly intricate Cervical plexus.
Any neurological damage to this realm is bound to cause issues other than cosmetics. We communicate using facial expressions, so if the muscles are not working we are not communicating as efficiently. No idea about cosmetic surgery, but I doubt there is much that can be done, other than adjusting by being cognoscente of how the lack of control effects non-verbal communications; perhaps to compensate for it via other means like using you hands more to express your emotions.
February 12, 2015 at 11:40 pm
Just passed the three year mark and still have some lingering paralysis on the right of my face. I can close the eye now and things are greatly improved but definitely not normal. Not the feel, look or function. Still, VERY SLOWLY, it has improved. In fact, I occasionally have people remark that it’s looking better and I hadn’t noticed.
What I have done to date: facial exercises given to me in the rehab hospital; Bell’s Palsy exercises; exercises of my own devise; massage; trying to manipulate the right side of my face to match up with the left in front of a mirror; applied heat.
How much my efforts or just plain time and healing affected my improvements, I can’t say.
Re going out in public, I know from experience that you don’t want anyone to see you like that. I’ve gotten to the point that I don’t care now and people don’t show any negative reaction.
I’ve practiced in front of a mirror to form a smile that camouflages the ‘bad’ side of my mouth and my eye that doesn’t open fully. You might try that. Practice until you can do it without looking, so you know how it feels when you do it right. I have either numbness or no feeling on the right side but I can feel where the muscles bunch up. If you can’t get one side of your mouth to curl, perhaps a sexy crooked grin would work for you. Worth a try.
February 13, 2015 at 12:37 am
I too have residual face paralysis on my right side. Initially I couldn’t close my eye, smile or talk without slurring my words. Eating and breathing was affected too. Then there was, and still is, the itching around my eyebrow that can drive me crazy at times.
Most of my facial symptoms have been reduced substantially seven years post GBS/CIDP/MFS. I feel that I’m still improving and am more hopeful after my recent Rituxan treatments.
Funny you mentioned practicing smiling, that is exactly what I did for a long time. It helped me relearn facial expressions and how to close my eye. When I think about it, like just now when reading your post, I can sense the numbness still in my face. But I’m so used to it these days that I normally don’t notice it or even think about it anymore.
There may be some truth in the ‘three year mark’ for many of us. But I’m a “the cup is half full” kind of guy and maybe that helps me stay a little more optimistic about my recovery possibilities.
I wish you and everyone here the best recovery you could dream about!
February 17, 2015 at 8:44 pm
Jim, thank-you for responding in this thread. The fact that you are still improving after seven years gives me much hope! I found it just too hard to believe that I am going to be stuck like this the rest of my life. I’m going to keep working at it and wish you the best recovery as well. 🙂
June 14, 2016 at 9:06 am
I realise this thread is quite old but I’m wondering whether anyone has any updates o give on their progress and what worked/doesn’t work in terms of therapy, exercises etc please? Azgold, I hope your recovery has continued!
I was diagnosed 3 months ago and was 10 days in hospital having IVIG etc. My legs were weak (getting better now though i’ve had a couple of brief setbacks) but the main problem is my face. I had bilateral paralysis but though the right side is 75 pcent back my left side is frozen. I get numbness in my lips, I can’t shut my eye and of course speech, eating and drinking are difficult. Yesterday my left lip moved for the first time – a tiny movement but it’s still there today and I have control of it. It’s a first step! I’m doing a lot of physio including electric therapy, as well as acupuncture. I try to smile looking in the mirror. I’m taking B vits, magnesium and omega 3. Is there anything else anyone can suggest please? And any words of encouragement as to how to move forward?
Thanks and wish you all continued recovery!
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