Anne developed facial palsy after contracting Ramsay Hunt syndrome, a rare complication of shingles affecting the facial nerve. She tells of the many months she spent searching in vain for answers and for support.
Anne before Ramsay Hunt syndrome
I would like to tell you about my journey – one that didn’t take me to faraway lands or exotic places: my journey with facial palsy.
My story begins in late May 2009. I was sitting in the garden on a sunny Saturday afternoon when I suddenly felt a sharp pain behind my left ear, shortly followed by another twinge, and then another. I took some painkillers which seemed to help.
Sunday morning I woke up with another stab of pain, but this time in the top left of my head. Again, another one followed. I swallowed more painkillers.
Late on Sunday evening, I started experiencing these even sharper pains inside my left ear. It was excruciating.
On Monday, I decided a GP visit was needed – only to be told that the pain was nothing, and to keep taking painkillers. Tuesday at work, the pain continued as sharp as ever. I left early to go to the local hospital. After nine hours of various tests, I was told to my relief that it wasn’t a brain tumour, and advised to rest for the remainder of the week. That’s when all sorts of things start going through your mind…
The following Saturday was the start of our two-week holiday in Spain. I was looking forward to relaxing in the sun.
Sunday I felt strange. Not ill as such, but strange. My left eye felt as if there was something in it.
On Monday morning I woke to find the left side of my face had dropped. The tea I tried to drink fell from my mouth. I was horrified, in a state of shock. I immediately thought I had a stroke, but my arms and legs worked normally. My husband and I went to the local hospital. I was discharged after five hours of treatment and two intravenous drips, which I now know were steroids and antivirals.
I collected more meds from the pharmacy to take during the next week or so. I felt very unwell and tired most of the time. Blisters appeared below my hairline and at the side of my left ear. I later understood it was shingles. The other symptoms I experienced were lack of taste (I still do), hearing problems (everything seemed so loud); also my left eye was very dry and unable to blink, and I was unable to brush my teeth properly.
We stayed in Spain for three weeks instead of two, hoping that this horrible thing that has attacked my face would go. On my return to the UK, I went straight to see my GP and was given very little sympathy or help: ‘You will just have to get on with it,’ I was told. ‘Nothing else can be done.’ The GP said I had Bell’s palsy. It was in fact Ramsay Hunt syndrome: the shingles were a telltale sign.
After Ramsay Hunt syndrome struck
As I was off work from June until September, I had time to search all avenues for treatment. Over the weeks that followed I scanned the internet for a cure – any cure. I tried acupuncture; I purchased a TENS machine for electrical nerve stimulation; I gulped down vitamin B6 and B12 and some tablets from New Zealand… You name it, I tried it. I spent a small fortune hoping that something would help my face return to what it was – and bring my smile back.
When you’re a woman, it’s not unusual to look into the mirror and wish that you could change this bit and that. Now all I wanted was to have my old face again, just as it used to be.
My job was front-of-house reception in a big corporate business. How could I expect to sit there with a face that was paralysed down one side, and not being able to talk properly, and drooling when I did speak? My confidence had all but gone.
I made several visits to my GP and still didn’t receive the slightest help or sympathy. I asked about Botox injections, which he knew nothing about. He did say he would look into it. He sent me for a brain scan just in case they had missed something.
I had to return to work in September. After searching the internet to find somewhere where I could get Botox to help with my condition, I came across the address of a specialist facial palsy clinic. I was overjoyed to find a place where people would know what I was going through. I printed off the information and sent it to my GP. I heard nothing. When I rang to ask if they had received the information, the receptionist said they hadn’t; so I faxed it over, and waited for my GP to refer me.
Anne at her son’s wedding
In September 2010, my son got married. I hoped, as all mothers do, to smile in the wedding photographs; but there was no smile. As the sun shone on the beautiful day, I had to wear an eye patch. I felt ugly.
Eventually my referral came through the following month. It had taken a whole year for me to receive the help I needed. At long last I just might get somewhere…
On my first visit to the clinic, I was a little nervous as I didn’t know what to expect, but the staff were incredibly friendly and understanding.
Thanks to many sessions of physio and Botox, I now have a face that resembles my old face. Still, I know that my old smile will never come back.
Before I had treatment, my lipstick made me look like I had cut my throat. Now I can put make-up on. Not quite as well as before, but hey, at least I can make a reasonable job of it.
I can’t thank my husband enough for all his support during this journey. He and I have done our bit over the years. We have worked hard with my facial exercises, everyday massage and stretches.
I owe a great deal to my surgeon and my speech and language therapist. I am about 85 per cent recovered, and as happy with my appearance as I can be.
But I know that there are still people out there who are suffering and need help and support.
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.