Bells Palsy - 10 year anniversary

Hi All

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.

6 Replies

oldestnewest
  • Sophie

    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.

    Wish you every success, best wishes.

    Chantev

  • 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

  • Hi 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

    John

  • 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.

    Sophie

  • Hi Sophie,

    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.

  • i have bell's palsy now .. and tbh my mother treated it the same way for 3 days till my grandma saw it and got angry because she recognized it.

    You can try strict facial massage routine with olive oil.

    Try consulting some cosmetologist for face reconstruction options, they know how to fix it probably.

    I hate the lope-sided smile and the talking from only one half which is VERY tiring.

You may also like...