Just want my smile back :(

[Jessmiranda]

Following a major car accident 12 years ago and not diagnosed properly, I was left with partial facial paralysis, I work in retail, everyday is a struggle and I want to break down and cry every time I look at my recent wedding pictures where I'm trying hard not to smile or have a really big one- sided smile. My one eye also looks considerably bigger than the other. (I couldn't even enjoy the day) I now shy away from any social situations. Is there any hope in getting my smile back please? Any help, guidance or suggestions would be appreciated.

JM

[Chantev]

Hello

I can sympathise with you I too look at my wedding photos and I remember trying very hard not to smile. Yes it is tough on our self esteem to go through life with such distortion to our face. I remember having a cute little face, but not any more.... I suffered from Ramsey hunt syndrome some 8 years ago, there has been very slow progress but I am now having Botox treatment for both my eye and my face. I have to brace myself and be very brave in social situations fortunately I am a person of great character and refuse to be at the mercy of other people thoughts. It's too bad they have to face reality we did not choose to have facial palsy, we have to be positive and make the best of a bad situation. I find that I approach the subject when I feel someone is staring at me, I explained that I have been very ill with both shingles and Bell's palsy. Please don't give up hope, hang on in there, it is not going to happen overnight, you are going to smile again but a smile that will radiate from the inside. My way of coping with my facial palsy is to be very well groomed, I have a sharp hair cut, always wear makeup and choose nice pieces of clothing. This is my strategy for deflecting attention from my face, people who I meet always comment of how nice I turn out...

I hope I have managed to bring some comfort to you, it is tough I know to face people everyday in your line of work, I find a sense of humour and witty comments make people aware that you don't have to be a pretty face to belong to the human race who is obsessed with the physical aspect.

Get your GP to refer you to special units that specialised in Bell's palsy sufferers, Oxford University has a research unit and is doing wonders. I got referred after some info from Facial Palsy UK and I have found them to be very helpful, from the facial physiotherapist to the Consultants. Please do look into it, it has been tremendous confidence boost to attend the outpatient clinics.

Chin up, look at them in the eyes, meet their gaze and challenge their thoughts, is the only way forward. All the very best.

Chantev

[PennyP in reply to Chantev]

Chantev 

Reading your post has really made me think differently about my facial palsy. I too was diagnosed with Ramsey Hunt Syndrome in March 2015 and the progress has been really slow. It is hard to go out and socialise and I hate having my photograph taken. I used to love going out socialising and now would prefer to stay at home. 

My GP and Specialist have been fantastic and I think having a great team to help you does make a difference as I have read so many posts where people don't have any help, but your words above have lifted me this morning and I hope they have lifted anyone else who has read them. 

Penny

[butterflyprincess]

Have you been having facial palsy physio at all? Medical Botox can also be a huge help too. Queen Victoria Hospital in East Grinstead is where I go. Also facial palsy uk is a really helpful charity. sorry not sure if paralysis is same as palsy though, I got facial palsy following brain surgery and the whole left side of my face was expressionless for months, 9 months on I'm getting my smile back & Botox is helping even out my face. Hope that helps? I know it's devastating looking in the mirror and not recognising or liking what you see. Let me know if I can help in any way x

[TimothyRees]

I have suffered from facial palsy for 63 years and I know in part how you are feeling. I have regular Botox treatment which has helped and this might help you too.

I have also received psychological therapy at the special Facial Palsy Unit at John Radcliffe Hospital in Oxford which has been very helpful in improving how I view myself.

There are treatments and therapies available so go for it. Your first step is your local doctor who should be able to arrange a referral to the special unit at JR Hospital. They have been immensely supportive and I can't fault them.

Go for it. I am with you every step of the way!!

[elisab]

I am a 33 year old female and have been left with facial paralysis following Ramsey hunt syndrome 3 years ago. I saw a facial therapist at the facial palsy clinic at Birmingham QE who was brilliant and gave me daily exercises which I did for several months. Now I have Botox for synkinesis every 3 months. Depending on the cause of your paralysis you may be eligible for surgery so I recommend seeing your GP to get referred to a specialist clinic. The neurologist who gives me Botox told me about the surgery although it wouldn't help me. I know exactly how you feel as when I see photos of myself I want to cry. I used to love my smile and now I hate it. It's a lonely place to be where no-one around you understands how you feel. I hope you are able to get a referral and there is help out there to improve your paralysis. Best wishes, Elisa

[Jessic93]

Hi,

I'm glad you have reached out, it can be a very lonely scary place. I suffer from right sided facial palsy following a stroke when I was 17. I've had 2 surgeries which has improved my face slightly though it's still noticeable. I also have a special eye (ha). Similar to what other people have said, I would ask to be referred. I'm up north and have an amazing consultant at the RVI who couldn't do more for me. In regards to social situations it's such a difficult problem because we can't change how we feel about ourselves over night. I find that I'm okay if the rest of my life is running smoothly. For instance I've gained weight since having my son, I'm not fat but bigger than I'd like to be, or if I know my hairs needs cutting etc it immediately triggers toxic thoughts about my face and how everyone else sees me. It's not just appearance, I'm at uni and if I'm feeling the stress there it also starts depressive feelings. It's like all bad feelings, they feed eachother, except we have the added 'bonus' of dealing with a loss of identity and self hate. My advice would be like the lady above said, do your best to keep yourself feeling good, it's not about putting lippy on for others to find you attractive, but making yourself feel good and daring to smile. I try to manage life's stresses so they don't get out of hand, sometimes this is out of our control but deal with those problems when they come along. The worst thing you can do is look at photos and wish you didn't look like that, you've had a beautiful wedding day, something not many have, and have a partner who loves u. If I'm feeling shit I organise a date night out so I can make time making myself look and feel sexy. My worst social situation is meeting new friends of my partners, I drive myself insane thinking about what they will think, but then I remind myself that's it's not them who's snagging me so why am I worrying!

I've rambled on a bit but I hope your okay and here if you want to talk

Jess

[Karen-FPUK Partner]

Hello, I'm sorry you are having such a difficult time. It's very difficult to go through a dramatic change like this and often the feelings experienced are related to a loss of identity. I think this makes it harder when people say things like "But you look fine to me" or "It's not that noticeable" because actually the loss you feel is much deeper. The struggle not to smile will be possibly having a much more dramatic impact on you than friends and family will realise. Also, because this happened due to a car accident, historically it has been difficult to find support because it's a rarer cause of facial palsy, so it's no wonder you feel this way. One way forward is getting referred to a specialist centre and there have been helpful suggestions made to you already. There are lots of different specialists around the country so do email us on [e-mail] if you need further information, although we cannot recommend. Also you may be interested in attending one of our Support Groups which we have around the country. We could also put you in touch with other people who specifically have facial palsy due to trauma. The recovery process is not just about exploring medical options, it's also about working on your confidence. Meeting others with facial palsy and getting the right psychological support can make a huge difference.

[Kimadele]

I am a woman and at age 56 had Ramsay Hunt syndrome and I haven't been able to smile properly for almost 3 years and the pictures of me at my daughters wedding are awful just a wrinkled face rather than a smile. I have had some surgery as I was unable to close my eye on the affected side, the face was very dropped and the eye had become hooded affecting my eyesight. My eye sight is better now the eye is more open, but the eye still does not blink fully.  The right side of my face remains very stiff and my surgeon has recommended botox however the appointment is not until September 16 and in the meantime I feel there could be further deterioration. I am heartened by all the comments here from fellow suffers and feel I could benefit from facial therapy and will contact facial palsy uk. Thank you & good luck to all

[N1man69]

Have you considered surgery?