Another step in the right direction! - Facial Palsy UK

Facial Palsy UK

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Another step in the right direction!

hje23 profile image
4 Replies

I have had Bell's Palsy on the left side of my face since 2000. Very little was known then locally about it, so very little treatment offered. In 2013, I had a relapse. This time more was known. I've had an mri, seen an ent consultant, had physio at local hospital. Been referred to see specialists at Queen Victoria hospital, where I've seen a plastic surgeon, who decided physio was the best way forward for me and I now see a facial physiotherapist there. After a year of physio, the left side of my face hasn't looked so good on fifteen years. Still got a way to go, but I celebrate every little step, for example, in may I noticed I could get my lips into an O shape and could clean my teeth without my left eye closing. Recently had a minor blip. I had a slight cold and the LHS of my face dropped. Luckily it recovered within a week of the cold going. My latest celebration is that after 15 years of not being able to eat a meal, wear powdered eyeshadow, go out in the sun or cold, have my photo taken with a flash without my left eye watering, my eye no longer waters under those conditions. I had a minor op in March, to cauterize my lower tear duct shut. Last week it was confirmed by the specialists that it has worked. Plus the general dry eye I have is improving.

I have been lucky with the help I'm getting, but my patience and positive attitude is what's getting me through it. I'm not going to give in to it. I take set backs with a pinch of salt and get back up fighting.

I hope this helps those that have been struggling.

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hje23
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4 Replies
josephine768 profile image
josephine768

It fills me with hope reading your story! So glad that you are now getting help and starting to see an improvement :D It must feel amazing to see changes! I got Bells when I was 36 weeks pregnant. 11 months down the line I have seen improvements. I can relate to some of the things you have talked about. My eye always waters when I eat and I struggle with cold weather. I also struggle with makeup because it always comes off! However, reading about your experiences I have decided to be referred to another specialist to try again! The specialist I am with now basically said there was nothing else he could do so I am not going to give up, and like yourself, I am going to keep positive and try a different avenue!

Thanks for sharing your story :D

lillyfields profile image
lillyfields

I have had bells palsy , right side since I was 13 yrs old, I am now 48. I have never had any treatment and have never been given any hope of treatment...until last year. I am still in battle with my Clinical Commissioning Group to try to access treatment. Where I live there are no NHS options , all treatment is carried out via a private clinic.

My CCG do not accept that treatment is worth while, or even value for money, and no matter what evidence is given to them they will not consider any funding.

It is very difficult to remain positive during the whole process.

I am so glad that you have the correct treatment and are seeing and feeling the benefits. I wish you progress and continued recovery xx

hje23 profile image
hje23 in reply tolillyfields

I'm sorry you are having trouble getting the treatment you need. Having seen some of the posts people put on here, it does seem to be that the treatment isn't available across the nhs, which is unfair. I was lucky that my ent consultant was friends with the consultant who runs the facial palsy unit I attend and so knew about it. But the unit has only been going for about 7/8 years and know there are very few of them.

I hope you win the battle to get your treatment.

lillyfields profile image
lillyfields

Thank you..I rather think that it very much a lottery across the country no matter how old you are or how long someone has had facial palsy.

It is however lovely to hear of a positive story and I hope that the way you have been helped can be a model for everyone in the country both patients and clinical staff to see how it should be done... x

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