It has been 10 years since being diagnosed with Bells Palsy, I was 14 at the time and just started a new school. It was unbelievably hard making friends with a lop sided smile. I didn't receive any treatment and as I was quite young, i couldn't take myself to Physio or treatment appointments... my parents believed it would all get better in time.
My family say they can't notice anything and don;t know what i am worrying about, but this really frustrates me! I was recently a bridesmaid for my sisters wedding and i was in so much pain trying to smile naturally. I also hated the pictures of myself which came back from the photographers, where it is clearly noticeable.
Bells Palsy is something i think about every night when taking off my makeup, and the first thing i think about in the morning when i wake up. I went to see my GP last month, to see if there is any treatment for someone like me who has seen not much of an improvement after all this time. I had a bit of a meltdown and got upset, so he referred me to counselling sessions... but i'm not sure if this is the answer? I'm not depressed or anything like that, I would just love to have more symmetry in my face and a natural smile so i can feel normal again.
I just want to know if anyone has had this on a long term basis and if you can recommend any treatments. I'm not expecting a change over night, but something that can gradually improve both visually and confidence wise. I'm looking into facial massages, but this comes at a price.
Any advice, treatment plan or recommendations will be much appreciated!!
Thanks J.
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SophieJem2406
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I too had BP and left to my own device until through this forum discovered the John Radcliffe Hospital at Oxford which has a research dedicated to Bells Palsy in their Plastic Surgery and Oculoplastic Centres. Get yourself referred by your GP, mine was very honest, she did not know of their existence. She duly referred me and I have started having treatment, it was so reassuring to find professionals who understood me. They are very busy so be prepared for a long wait. I have found some form of symmetry to my face and my eye is much better. I suffered for 7 years...find them on the Internet, the surgeon is Dr Gore. He has restored my faith in the NHS.
Hi Chantev, thanks for your response. I live near Oxford, so that is really useful to know about the John Radcliffe Hospital. Thank you for recommending them. Did you have surgery treatment or some type of botox/electrical therapy? I'm pleased to hear you have formed some symmetry, it's the littlest bit of development or improvement that would keep my motivated/positive! I will mention this to my GP next time and see if he has heard of the department at JR. Many thanks again and all the best. Sophie
I developed Bells Palsy about five years ago and didn't receive any immediate treatment either and was told it should improve over time. Eighteen months later I had seen no improvement and had lot complete movement in one side of my face. My family also continually told me (and still do) that it isn't that bad and they can barely notice it so I know how frustrating that can be.
After seeing no improvement I was eventually referred to a plastic surgeon who specialises in facial paralysis. Since then I have had a titanium weight put into my eye lid to help with eye closure. I have also had two surgeries - a cross facial nerve graft and a gracilis muscle graft which basically take some nerves and muscle from the leg and put into the face which help to create a smile on the affected side. There is a lot more information on these two surgeries facialpalsy.org.uk.
This is just my own personal experience and I know many people are not offered these treatments for some reason so I regard myself as one of the lucky ones but this may be an option for you to consider. However, these have required plenty of time in hospital and plenty of facial swelling over the last couple of years. I had the muscle transfer about six months ago and half of my face is still fairly swollen and bulky. I have seen improvement but it takes time and I'll still probably have to wait another six months or so to see real improvement. Again, this is just my own personal experience and whether this is an option for you, or suitable for you I don't know. I have never had a facial massage so I'm not really able to advise you on that.
I'm sorry I couldn't be more help and hope you get the treatment you are after.
Thanks for your response John. It's really interesting to hear how people have coped or what treatment they have been given. My only concern with anything surgical is that there is a chance it would get worse, rather than better. Something I should mention to my GP again i suppose! I hope you are making a speedy recovery.
Your story sounds a lot like what happened to me, I was a little younger though. I had the same query with my GP and they referred me for Counselling and prescribed me with antidepressants because ' I am self-conscious' about my face so cognitive and behavior therapy will do the trick to overcome BP, that appointment upset me. After 18 years living with this I think I am over the self conscious thing with strangers but no with myself, BP is still my first and last thought everyday. I did not have quick treatment when I was diagnosed at 12 years old but after two months of no much recovery I attended physiotherapy and electro-estimulation for one year. When the year was over I was discharged with no further follow ups.
I did improve a lot but developed synkinesis and my jaw on one side grew bigger that the other because of an 'orthopedic tool' I had to wear during treatment, it was something that was pulling my mouth back to the center.
MASSAGES: at discharge they gave me a leaflet with some exercises to do at home and massage my face, it is basically open and close your jaw, massage the affected area doing circles gently, it is to relax the muscles on the affected side. They also advised me to put a hot compress afterwards. I rarely do this now. It is hard to be doing the same for 18 years...
BOTOX: At 16 when I was really self conscious about my face, I was referred to have botox injections every month, however it really makes it looks worse, asymmetry is not solved by this plus my already paralized muscles were so stiff that the other half of my face was overworking. So after 3 months I stopped using this and the effects lasted for another 3 months.
I do not smile on pictures and people complains about it because when I hear the word pic I will put my serious ' trying to look nice' face I dislike pictures of me laughing or smiling. I have also heard about the surgery but I do not know the criteria to be referred for it. I have been told that I should go private because this is cosmetic surgery not a medical problem, so to be honest after my last appointment with the GP i do not know if start saving for my jaw correction or ask her again, I do not feel confident talking about this with my GP again...
It knocks me down sometimes when people asks ' what happened to your face' I mean you look cute but it is not symmetric'...that's when I become self conscious but 18 years dealing with this is a long time. Counselling would be helpful to deal with that felling but no really with my face asymmetry.
So sorry, just realised I never replied to you after your long and detailed message! Thank you for all the information you have provided me as well as your story.
So a little update: I have been having botox for the past year. I can't say that I'm overly impressed and I feel the numbness is making it a lot worse. They do however inject into my chin which irons out the dimples from when i smile (not sure if anyone else gets that?!). The most recent injections was from a new Doctor and he injected too close to my mouth which has resulted in gaining a lisp as well as dribbling when drinking. I want this to ware off immediately!!
Still thinking about massages, the NHS have given me some home exercises, but I must admit that i have been a little lazy about this. I need more of a structured routine, maybe go and visit someone once a fortnight and do these exercises/massaging. I often wonder if acupuncture or some sort of electrical stimulation might improve things.
Counselling isn't the answer for me, i'm a bubbly person and pretty much love everything about my life except for the way I look. I had some counselling sessions last year and they basically wanted me to write a diary about my feelings.. nope, I don't have time for that and it's not going to make me look any different!
I have had it for 13 years now.. sounds like you have had a very similar experience today. I wasn't offered any treatment, and my family and friends also say they don't notice it, however it's all I can see when I look in the mirror, and I hate every photo.
I'm actually starting Caci treatments tonight, I'm hoping it will make some difference, even a small improvement would mean a lot to me.
Thanks for your response. It sounds very similar to me! May I ask how old you were when you were diagnosed?
I'd be interested to hear how your Caci treatments work out, so let me know how you get on.
I have been having botox over the past year, testing various areas of the face to see whether it is making much improvement symmetry wise or not. I can't say i am overly impressed with the Botox, it makes my face feel even more numb and restricted. I also had a botox update last week and the new doctor injected me with botox too close to my mouth and I've now gained a lisp as well as dribbling when drinking etc. Not good!
I have also tried counselling / help with anxiety, but this didn't seem to make much of an improvement.
I was 13, and I had just started a new school as well! I feel now like it shouldn't matter to me, that there are more important things.. which of course there are! But it does get me down every day. Find myself trying to edit photos desperately to make my eye look normal- that gets to me more than my smile I think.
I had a taster on Saturday and she said that my eye was twitching whilst she was doing it, so there was some response. Also my face felt really tight after which apparently is a good sign. Any improvement at the moment would made such a difference!
She said she would speak to the botox nurse that she knows to see if they know of anything that may help, so thank you for your feedback with that, definitely leaning away from that now.
I've been advised to go for counselling too, and I have really bad anxiety, but I was just so sceptical on what they could possibly do to help to be honest.
I'll let you know how I get on with Caci.. she said she would do it as a case study so I'll have photos to show if it does improve. x
my heart goes out to you sweetheart the first time I had Bell palsy I was 9 years old it was 1969 since then I've had it 12 more times on both sides of my face. and it states only one in a million gets this I like them to explain that to me. I have posted about my conditioned on July 7th 2018 it is called having Bell's Palsy 13th times. I wish there was something that I could tell you that ease your mind but I never regain the usage of all facial movement I was left with severe paralysis but each one of us is different so please do not give up and don't stress over something that you have no control over don't let it control you live your life to the fullest. I tried not to let mine affect me it did in the first eight times I had it but when I got older I could not let it consume me or else I would be lost forever. till this day I still get severe pains behind my ears on both sides I always wonder if it's going to come back since last time I had it I was 47 I will be praying for you honey for the Lord to give you strength and please do not let this like I said consume you you are young live your life sweetheart
I have had a Facial Palsy since 1990. Knowing what I know now i would have insisted on seeing a Neuroligical Physio. 10 yrs ago i had a Face lift which had a very good outcome. Thinking of more surgery but I am now 70 and not good with general Anesthetics
Hi I to have had it for 10 years so I no exactly how you feel I've been having botox for the past 8 years and have just had a facelift 3 weeks ago which has made a massive difference like you I'm really paranoid about my looks and hate my picture being taken I also feel unless you have it you have no idea how we are feeling I to get it doesn't notice but it's how you feel that matters go to the doctors and look into botox
I'm sorry to hear about this honey. Believe me I know your frustration with you read my story . First time I had it I was 9 years old that was in 1969, that I have had it 13 mine switched sides so yes I was left with paralysis . Exercises that they had me do each time I have had it actually was "AEIOU" YES IT'S THE VOWELS WHEN YOU DO THE A E I O U PUT AS MUCH EXPRESSION AS YOU CAN SO YOU CAN STRETCH YOUR MUSCLES AND NERVE TO LOOSEN THEM UP SO THEY WILL NOT BE SO STIFF. AND DO NOT FORGET TO KEEP YOUR NECK WARM THIS ALSO AFFECTS THE BELL PALSY. AND YOU CAN ALSO APPLY THE HEATING PAD ON THE SIDE THAT YOU DO HAVE THIS IT WILL WARM THE MUSCLE ON THE NERVE. CHEW A LOT OF GUM WHEN YOU'RE NOT AROUND ANYONE PUT A LOT OF FORCE IN THE CHEWING GUM SMACK THOSE JRAWERS OPEN AND SHUT. DO THIS EVERY CHANCE YOU GET WITH YOUR AEIOU AND CHEWING YOUR GUM JUST WORK YOUR MUSCLES HARD WHEN YOU FEEL IT TIGHTENING UP YOU RELAX IT. GOOD LUCK SWEETHEART I'LL PRAY FOR YOU AND EVERYONE ELSE THAT IS STRUCK WITH THIS AWFUL ILLNESS . AND JUST HAVE FAITH AND REMEMBER WE ALL HEAL DIFFERENT AND IN TIME YOU'LL BE OKAY NEAR YOUNG KEEP FAITH
Try alternative methods, steam, hot compresses, i use a warm washcloth, ive had 4 years, getting better slowly, i tried everything..acupunture, cryropracter, hands on therapy, a combo. of massage, and munipulating tissue to improve blood flow..lots of yoga and shiatsu, all helped, rest and diet very important, multi b and fish oil, and most important probiotics so u don't get it again..and of course prayer, God is the ultimate healer..peace
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