Paul’s facial palsy developed gradually which should have been a red flag for medical professionals involved in his care.
Paul after facial palsy struck
I noticed a numb feeling in 2016, and my family began to notice changes to my face.
It was a slow process. I began to notice my left eye wouldn’t close completely and I dribbled from my mouth while drinking, my speech also became slurred.
I visited my GP with a diagnosis of Bell’s palsy and steroids were prescribed. I took these for around six months but my condition became gradually worse and I started to feel slightly dizzy and disorientated, I then stopped taking them.
An ectropion eye surgery operation was performed to help improve my eyelid closure.
I was still able to work as a musician and piano teacher although this affected my ability to accept some work situations due to feeling uneasy, my confidence was also affected.
I had various scans and appointments with my neurologist at the local hospital, a possible link to a gluten intolerance was suggested, so I tried a gluten free diet for a couple of years.
I also requested a Lyme Disease test which was proved negative.
I had many tests which included a lumbar puncture, bone marrow biopsy and EMG nerve test, and my own trials of acupuncture, head massages, etc. I eventually made an appointment with Sarah, a speech therapist at my local hospital who I will always be grateful to, as she referred me to a specialist at a London hospital.
This began with my journey of many visits to London during the Covid pandemic, I had a series of MRI scans and tests.
In 2020 I had a temporalis muscle transfer and cable graft nerve operation, the nerve biopsy gave a diagnosis of Amyloidosis.
This proved to be a rare case for the cause of my facial nerve damage.
I was then referred to the National Amyloidosis Centre in London for annual checks and SAP scans, with a diagnosis of AL Amyloidosis.
Continued operations were performed at the hospital including an eyebrow lift and platinum eyelid weight to help with eye closure.
I currently still visit the hospital for Botox injections every six months and my features have shown great improvement after the many treatments.
I’m not perfect as I have lost my smile and my left eye becomes either dry or crocodile tears, but I hope my Facial Palsy journey will help to provide hope and advice to others.
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.