Living with facial palsy

Karen Johnson, 43, was born with paralysis of the face. It has affected her sight - including a brief period where she was effectively blind.

Childhood

"I was born with facial palsy, and my left eye never blinked. I couldn't squeeze it fully closed - I'd stuff my head into the pillow to sleep. It was always very dry so I'd constantly get eye infections, and it was very sore. The lower lid is very thin, too, so that my lashes often poke into my eye and irritate it further.

Adult life

But it wasn't till I was in my thirties that I realised I did have a specific condition, and it took even longer to make contact with other people with facial palsy and talk about what had worked for them. Eventually I felt I had to opt for surgery, as the whole side of the left side of my face was starting to droop because I had never been able to use the muscles properly. I had a weight inserted into my upper lid - and it didn't go well. It felt heavy, and then as the lid was healing it started to swell so badly that it was pretty well closed on the left and was even dragging down the right so that I could hardly open my "good" eye either.

Experiencing sight loss

My vision was almost zero - I could just see a few things, at floor level. I couldn't function like that, and insisted it was removed. They decided I'd probably been allergic to the gold. However, as the muscle had been cut, it was still possible to work on stretching and pulling down the eyelid, and though I still don't blink I can squeeze close my eyes now.

What next?

Now, we're going to see what happens next, and especially see what can be done about my lower lid. I'd tell someone considering having that operation to look at all the alternatives - the new platinum chains and so on - and to go to a specialist facial palsy clinic. For me, the operation I had was an unsuccessful procedure…but it's had a very successful outcome."

Related story

Can facial palsy cause blindness?

More Information

Facial Palsy UK

Wessex Facial Nerve Centre

Article published in NB magazine March 2013.

Last updated: 28 February 2013

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