Although an ear vesicle was clearly visible, in July 2022 my Ramsay Hunt Syndrome was misdiagnosed by my GP as an ear infection and I was prescribed antibiotics. Three days later I woke up with a dropped and frozen face.
A stroke was possible, so early that morning I was taken to a London Hospital, as my local hospital wouldn’t have dealt with a stroke. Bell’s palsy was initially diagnosed, the diagnosis of Ramsay Hunt Syndrome came later. Antivirals and steroids were prescribed and promised by 10pm but weren’t signed off until the next day. I signed myself out of hospital at 2 am the next morning, with no medication and a roll of surgical tape for my frozen eye but no instructions how to use it.
Now, nearly eight months later, I’m permanently near deaf in one ear as the virus killed the cochlear hairs which can’t grow back. Double hearing aids have been recommended, but I can’t cope with these until my balance has improved. My balance was initially very bad and kept me bedbound for at least two weeks. It has recently worsened in spite of vestibular exercises, and I need a walking stick.
Although a normal blink probably won’t return, I now have full closure of the affected eye and no longer have to tape it at night or use vision-clouding ointment – which was a huge problem as my good eye is amblyopic, so it meant that I was partially sighted for four months – no reading, no tv, saw everything through a cloud of ointment.
The affected side of my face has synkinesis and is unusually wrinkled, the eye filling with tears when my head is down or when eating, and it closes with various facial expressions. I’m stretching and massaging daily.
RHS also set off Atrial Fibrillation, and I am now on permanent blood thinners.
The promised six-week follow-up from the London hospital didn’t materialize and there has been no GP-initiated follow-up. My first contact was with a private ENT specialist who did a hearing test and organized MRIs. I discovered an NHS facial palsy specialist service via the internet. I’ve had two video appointments with physiotherapy and one with a senior consultant, with a face-to-face appointment with the senior consultant scheduled in just over two months when further treatment will be determined.
The whole experience of RHS has been life-changing. I can no longer drive and can’t go out alone because of poor balance which has curtailed many of my usual social activities. I am losing touch with friends because of embarrassment about my lack of balance and poor appearance. There are no disabled concessions as the condition is deemed not to be permanent.
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.