Just after surgery
At the age of 31, I was diagnosed with a large, life-threatening Acoustic Neuroma. Within a few weeks, I had surgery to remove the tumour, but when I woke up, I had developed a Grade IV Facial Palsy. There was hope this was just transient, but sadly this was not the case. The sudden impact of Facial Palsy was devastating. In an instant, my identity changed, I couldn’t smile, the face in the mirror was no longer mine. But it was so much more than that. I was unable to drink out of normal glasses/mugs, I would struggle to chew food at time, I couldn’t wear make up, go swimming with my kids, I tripped over my words, bit my lip more times than I could remember, I even struggled to wash my hair in the shower. My eye was painful and having to tape my eye shut every night to go to sleep broke my heart a little bit more each night.
Ali now
My self-esteem, while to others on the outside may have seemed unaffected, hit rock bottom. Initially, I had hardly any advice or support on what to do. Thankfully, I was made aware of the specialist facial palsy team at a hospital in Sussex and was referred down there. It means a 3 hour round trip every appointment, but it is worth every second. The team have been amazing. I have specialist treatment meaning my face has recovered significantly more than it might have otherwise. I’ve had peer support from others with FP, which is invaluable to meet others who know how it feels, and have got so much advice, support, even little tricks/tips to help manage my FP, that I feel I am now living well with my FP. Yes, I will always wish my face could return to what it used to be, but thanks to specialist professionals, the right treatment and advice, I feel that I have my life back. This is why in Facial Palsy Awareness Week, it is essential to recognise the importance of early access to specialist care, to change that myth that nothing can be done for facial palsy, and to help others like myself, learn to live with the devastating effects of FP, all the while knowing that with the right specialist care, you can learn to smile again – both physically and metaphorically!
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.