facial nerve palsy

Posted , 4 users are following.

im 17 and ive had facial palsy or whatever its called since i was born. my eye weeps everyday, i cant blink, i can smile, i cant move my eyebrow and apparently im going to lose my hearing when im older. The odd thing is i can still slightly move my mouth sort of to the side or fully down but not up. i havent read anything thats given an explanation to what i have. All ive read is things about it not being permanent or it starts up at a random age. Ive never had the chance to smile and because of it i cant be who i want to be in life.People think im nasty because i dont smile but they dont know that i actually cant smile. Life would be just so much better, so much easier if i could just smile and not look like my right eye is about to pop out of my head.Why isnt there are cure for something so ridiculous.I couldve gotten plastic surgery to get a muscle from my leg put into my face but then i could have a chance of losing all movement and the surgery may not even work. It seems to unreal because the majority of people can smile. its unfair.

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6 Replies

  • Posted

    Hi

    I have also had Facial Palsy since birth and felt very alone with this paralysis growing up. I created a website about my story www.facial-palsy.com which may be of some interest to you. On the website there are details about a Facebook group called Courage to Smile where many people with Facial Palsy have made contact and draw strength from each other. It's a really nice group because is such a unique problem and I think you would find it helpful to talk to others who understand what you are going through. I was wondering who told you you would lose your hearing when you are older? I've never heard of anyone being told that before. I know when we have compared notes between us on the Courage to Smile group, some of us have poorer eye sight on the paralysed side and some don't hear as well on that side, but I don't think anyone has been categorically told they will lose their hearing.

    Hope this post reaches you as this is an old message.

    Karen

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  • Posted

    hello to ''annoyed user'' there..chill ! am part of you too..i am 20 now and juz found out about this.. i was thinking it was a give that make me special since birth but i am wrong..its actually a disease!! haha. i live happyly even i cannot smile perfectly. am still proud being me. here in malaysia i join a lot of society stuff and love to be infront of public. so dear please dont even think that way ! we're special the way we've given my the lord. yes ! we can not smile perfectly but all of my friends say dont worry because i'd put the perfect smile ever in their life to many others people i'd meet. so being unsymetrical face is not weird.haha in fact it does not effect me at all. my brain is still working.i can still smile laugh. excell. and i am engineer wannabe .so relex and think. there's silver lining in each cloud. dont be ashamed of your own self because you are still alive . so enjoyed it ! dont let the time we had wasted juz by being down for nothing ! ok ! SMILE ! :D
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  • Posted

    you said from the beginning that the condition started since birth . so it could be type of congenital anomalies or aplasia/hypoplasia of the facial nerve. it's something related to the development embryologically . i think it's benign . but i want to ask about the other signs of facial nerve disorders ; your tears and are affected , your hearing in the affected site changed in quality. these questions are important to localize the site of lesion in the nerve .

    but how ever , saying that it begun since birth it means that the muscles of your face are atrophied and they are useless at this time even if the nerve back to work

    my point of view is that you can accommodate with the condition and stop thinking in the problem because it's not very much a big problem . you still eat walk speak think very well so take it easy .

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  • Posted

    You are being very dismissive saying "it is not very much a big problem". You could never understand what it is like to live a life where people point and make fun of you when you laugh. Physically it is not a huge problem, mentally it is a very different problem and difficult for people who have no experience of it to understand. Thankfully people are starting to understand this now and a new charity is being set up in the UK to help people with facial palsy.
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  • Posted

    hi again. this is sort of unpleasent feel in my heart when reading all the respon here. YES.. we're suffer from this. and noone else could really understand it unless they be in our shoe. but seriuslly when someone say they understand. they would not actually know how facial nerve palsy suffer .. the heavinees in heart when someone staring at our smile. questioning. being so fierce to smile. haha. but thts is something that make people remember bout you. i bet u fnp person will definietly be remember our wonky smile show.. mmmm so far. am having a great in my life. although i dont have perfectly curve of smile. but i am aware that i am still daughter to my beloced parent. so when someone out there want to judge u juz because on ur apperance. juz give a damn middle finger and say. hey iam uniques.. and i loved being me

    .I did cry on this a lot. as i read alot and all are saying bout surgery. hearing loss as we get older. muscle death. but u know what.. i guess am still lucky . because so far. i never had an medicial issue bout my health.. all my medical check up show positive result. and my eyes did not sores or dry. i have perfectly function big eyes smile .. and so far my hearing is superb. i dont have headaches problem. and my brain is fuctioning well as because i am graduated as an engineer. am juz having a wonky smile. but still there;s people outside there wont push us aside. cause everyone unique in their own style. so PLEASE STOP HATING ourselve. and juz enjoy life. as the lord still give us change to breathe. so y not. its ok if u dont smile. if it is NOT OK if u dont have smile and faith in ur own heart

    sincerely me.. shida palsy smile

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  • Posted

    hello everybody there.

    i want to say (specially to pinklion ) that the problem is not very big in the physical point of view . i know its very annoying to live with this problem , because its so much distressing psychologically .

    and i told you that you can eat walk think as well as any healthy else . so you are not handicapped and physically this is a very great . the problem you face is those people who are laughing on that apparent deformity in your face . but i want to draw your attention to the deformity in their personality . because the deficiency inside them , they look for the deficiency in people around them . and am sure that all these people are very small group( and maybe you are the best amongst them ) . and those who appreciate your problem are so much greater .

    i want to tell you something that alot of people you see that beautiful smiles on there faces are hiding alot of problems and sadness in there hearts so the beautiful smile is not always indicator to happiness .THE HAPPINESS IS SHINING FROM INSIDE.

    maybe god takes something from you but at the same time he gives others instead. so find these others.

    i am sure you know what is your problem . it's in the seventh cranial nerve- in other words -it's nervous .

    i want you to enter any medical website or even visit any hospital to see the nervous diseases such as multiple sclerosis , motor neuron disease, cerebral palsy, brain tumors, or any thing else just look to people of these diseases and say to any of them : i have 7th nerve palsy would you like to be in my shoes . you know what they will answer you ?: I PIG YOU.

    so you have a problem? yes you have . and no body but you knows what does it mean ? yes.

    but put thing in there normal sizes . i know it's not so small but at the same time it's not huge .

    and am sorry if talked very long .

    my greetings ...

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