I had blisters on my lips that were sore and a slightly swollen ear, with pain radiating down to my mouth. The doctors saw me straight away and prescribed antivirals and antibiotics. That evening, I became sick and experienced severe stomach pain. I called 111 and was sent to the out-of-hours doctor at my local hospital.
By then, my face had started swelling, my ear was swollen and painful, and new blisters had appeared on my chin and near my eye. Due to my immunosuppressed condition and continued sickness, the on-call doctor sent me to A&E for intravenous antibiotics and antivirals. I waited at A&E for four hours before finally seeing a doctor.
He told me my bloodwork was fine and my kidney function was normal – which was odd, considering I have nephropathy, and it is far from fine. He refused to give me intravenous antibiotics, saying, and I quote, that he had “seen worse than me”. I argued, reminding him that the doctor had specifically sent me there for the treatment. However, because I didn’t have a letter, he refused to administer it. Instead, he suggested I sit in the waiting room to see how I felt. By then, it was 2 a.m., and I was in terrible pain. I told him I wasn’t going to sit in an old chair for two hours and that I was going home.
The next morning, I messaged my doctor first thing. They called me in and immediately referred me back to A&E’s medical team for the necessary treatment. I was admitted for five days. Throughout my stay, I kept telling the ENT team, who were overseeing my care, about the numbness in my face and the pain in my ear. They said they would flush out my ear and assess the situation at their clinic the following week.
Before leaving for my appointment, I had a drink and realised something was wrong – my face had dropped, and liquid was dribbling out of my mouth. At the ENT appointment, they didn’t flush my ear as planned. Instead, they simply told me it looked fine and discharged me, showing no interest in the facial droop or pain.
Frustrated, I called my doctor again and went in that afternoon. By then, my eye had become very sore and was watering constantly. They booked an appointment with the eye team for the following day. Again, no one seemed particularly concerned about my facial paralysis. However, the eye doctor was much more worried about my condition. While there were no shingles in my eye, the area around it was very swollen, and by that point, I could no longer move it.
I was sent back to A&E, where I was redirected to the Acute Medical Unit (AMU). The consultant there finally diagnosed me with Ramsay Hunt Syndrome and prescribed steroids and morphine. They followed up with me a week later and again the following week. By then, there wasn’t much more they could do, so they referred me back to ENT. However, it took two months before I was seen, only to be told there was nothing they could do since they were not facial palsy specialists. I felt disheartened that no one seemed to care once my steroid course was finished, and I was left without direction on where to find a specialist.
A month later, in December, they referred me to the pain clinic and an audiologist due to the ongoing pain and constant noises in my right ear. No one had ever fully explained what was happening to me, and I felt incredibly alone. I’m still waiting to be seen by the pain clinic.
Thankfully, my friends have been wonderful and supportive, making sure I feel safe when I’m out and just being there for me. My smile has improved, and people who know me say they wouldn’t notice a difference. I can feel it, though, and sometimes I wonder if they’re just saying that to make me feel better. I’m feeling more confident now, but for a long time, I avoided going out, and when I did, I was always self-conscious about my face.
I haven’t seen any further improvement for a while, and I’m still experiencing pain in my face and ear. My concerns about a full-blown recurrence were dismissed by doctors, even though they noted redness inside my ear. No one seems to care.
Thankfully, I found a great group on Facebook, which led me to this site [Facial Palsy UK]. I haven’t attended a support group meeting yet, but I hope to go to the next local one. My face, head, and ear are still plagued by pain and constant itching. Maybe one day, this will all stop.
I had to postpone my treatment for rheumatoid disease because I didn’t want to risk compromising my healing while being immunosuppressed. Unfortunately, this led to a recent flare-up, adding more pain on top of my facial issues. I finally had my first infusion yesterday. It worries me, but on the bright side, my body feels better – now I just need to fix my face and head.
I want others in this situation to know that they must keep pushing for answers and help. The medical profession needs to understand what we go through and provide support and advice sooner rather than later.
I hope that, in the future, doctors will be more knowledgeable about these conditions – or at the very least, refer patients to specialists who are.
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.