Since my early 20s (1984) I’ve had a crooked mouth. My mum asked me if I’d been to the GP, so I did and they said that it’s not a great deal and nothing to worry about. When my youngest son was 1 years old (1996) I had a scan which showed nothing. The biggest change came in 2007, when I was 43 years old. I’d had my nose cauterised and afterwards I’d started to notice facial pain, and the left hand side of my face trying to pull downwards. It was a twitch, it only lasted for a few seconds when it happened. But it was happening quite often. I spoke with the ENT who had done the cauterisation who checked and said there was no issue. I had an MRI scan and nothing was showing on that, and was told ‘that’s just how your face is’.
But I knew there was something else, nobody gets facial palsy for no reason. I had another MRI and an EEG, which both showed normal. I finally got to see a neurologist (outside of my local trust) who did some tests and diagnosed me with a facial nerve schwannoma. I was then advised to see a plastic surgeon at a hospital (outside of my local trust) who performed Labbe surgery, with a cross facial nerve graft. This has improved my resting facial symmetry. I also have botox every six months.
Having facial palsy has affected my career. I had a lot of time off work due to the fatigue and the nature of my job within the NHS. However, after the surgery, I changed career paths to an admin role. Facing people was the biggest problem I had, because of confidence. Colleagues didn’t really take much notice, and didn’t ask questions; but once a person in Asda stopped me and asked if I had Bell’s palsy. I knew then that it was noticeable and I stopped going out so much. I would only go out with my immediate family. I struggled to eat and drink, and would dribble. Post-surgery, I do have more confidence. But even now, I go out with my daughter and she will choose a seat in a restaurant where she knows I’ll prefer to be facing away from other people. And she’ll discreetly tell me if I need to wipe my face. My family has been a great support throughout.
I believe that there needs to be an improvement in knowledge at a local trust level. There are specialists out there, but local trusts do not seem to know causes of facial palsy. I only got tested because of how much I pushed. Once I’d seen a specialist and was diagnosed, I received great care (even within my local trust, because they could research about it).
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.