My facial palsy story

This blog is written as part of Facial Palsy Awareness Week 2018.

” Why can’t I lick that piece of food off my lips?”

I was at one of my best mate’s wedding and my face felt a bit odd. Not painful and not uncomfortable, but it was struggling to do things that I would normally take for granted, like licking my lips. It sounds scary but at the time I just brushed it off and didn’t think too much of it as there was champagne to be enjoyed and the DJ was about to get started. This feeling would pass soon enough, I was certain.

It was when I was back in my hotel room a few hours later that I started to worry. I was struggling to close my eye by now and I knew something was wrong. Luckily this was a medic’s wedding and my good friend, Dr Andrew Beamish, who was best man, was on hand to take a quick look at me. There wasn’t a huge amount he could do at 1am at a hotel in South Wales but he reassured me I wasn’t having a stroke and he hoped with a good night’s sleep it might be better in the morning.

Unfortunately it was worse. I could barely close my lips to eat food properly or take a drink from a glass of water. However, in another piece of luck, the bride, Dr Ray Thomas, is a neurologist and she quickly diagnosed the problem. I was suffering some sort of facial palsy and I needed to get to A&E quickly and get my hands on steroids and some other drugs to address this.

Over the coming days I was diagnosed with Ramsey Hunt Syndrome, something I had never heard of before. In simple terms I had a case of shingles that attacked my facial nerves, which enter your face from your ear, paralysing them. Mine was a particularly severe case and I couldn’t move anything on the right hand side of my face.

In the video below, taken a few days after, I try to do four actions that many would take for granted on a day to day basis: smile, scrunch my nose, purse my lips and close my eyes.

You can see that there is next to no movement on the right side of my face. And one of the most frustrating parts of the whole experience was that no one could tell me when, or if, my normal facial functions return. The nerves might grow back, they might grow back incorrectly or they might not grow back at all.

At superficial level you might think the above is more of an inconvenience than anything else but it affected my physical and mental health in so many ways. Not only does it attack the facial nerves but also your hearing. Loud noises would cut right through me. Going out to buy a pint of milk was fraught with the worry about a bus screeching its brakes. I lost my sense of taste and had sores on my tongue. Water would dribble out of my mouth when drinking and doing other simple things like closing my eyes to stop shampoo going in them in the shower wasn’t possible. Sleeping had to be done with a tissue wedging my eyelid shut under an eye mask. I had to wear wrap around sunglasses at all times when outside as I wasn’t able to blink away dust or grit that might fly in to my eye.

I also found it much harder to interact with people. It was difficult to enunciate certain words and I felt like I was mumbling a lot more than usual. It wasn’t possible to smile, kiss, whistle and when I laughed I felt so self-conscious about how I looked that I would fight to avoid finding something funny. Humans use facial expressions so much when communicating and I felt I’d lost an integral way in which to show people what I was thinking or how I was feeling. As you can imagine the frustration was immense and it was difficult to keep a positive mindset with the minutes feeling like hours and the hours feeling like days just waiting for any sign of recovery.

I wasn’t getting many answers from my GP (“it should pass soon” was their standard statement) but luckily my mum knew of a small charity, Facial Palsy UK, that was able to help. A twenty minute talk on the phone to one of their trustees gave me more information than two hospital visits, two GP visits and a fortnight’s worth of internet research. I was given a few gentle exercises to do and told to get a referral to a specialist that was located near me, one of the only ones in the UK. My GP was less than helpful at this stage and refused to refer me, so I ended up going private and paying £130 to have a session with them. It’s hard to overstate how useful that 90 minute session was; it felt like I was talking to an expert who could answer my questions for the first time. My expected recovery, signs to be aware of, exercises to do and things not to do; all of which helped physically and mentally.

The human body is an incredible thing and over the coming weeks and months I slowly started to recover. Small steps like being able to hear properly, close my eye, whistle and a offer a semblance of my smile. The photo below shows me in Ghana about ten weeks after the paralysis and the slow improvements I had made.

This next photo shows me, back in Ghana, another 12 months down the line smiling on both sides of my face.

I feel about 95% recovered now. I still get the occasional twinge and my right eye scrunches up on occasions but I would have bitten your hand off if you’d offered me that in the weeks after it happened.

The theme of this blog has been my luck. Lucky that I was with friends who were doctors to get quick advice, lucky I came across Facial Palsy UK, lucky I could pay for treatment and lucky that I had a near perfect recovery. I was also lucky with those around me that offered so much support; my girlfriend at the time, her family, my family, friends and colleagues. They all kept my spirits up in numerous ways and made a bigger difference than I can describe here.

Not everyone is as lucky as me though, especially when it comes to diagnosis and getting quick access to the drugs that can make or break a recovery. I had to fight hard to be correctly diagnosed and then paid to speak to the experts; not everyone can do this and it shouldn’t be like that. Facial Palsy UK’s research estimates that approximately half of patients who suffer from Ramsey Hunt do not get diagnosed in time. This isn’t acceptable.

So what can you do? Firstly, you can make a donation to Facial Palsy UK to help them assist the people that need it. Secondly, you can look to understand this condition further and empathise with those that’s suffer from it. Thirdly, sign up to volunteer. Finally, appreciate your good health, I know I do so much more now.

11 thoughts on “My facial palsy story

  1. thanks for sharing this, I was told I had Bells Palsy 4 years ago and now Synkinesis, but some of your symptoms I had and still have…. so now not sure if originally I too had RHS. when I smile now, 4 years on, my face shows similar movement to yours 10 weeks after your onset!

  2. Perfectly put, David. Swap our names and places and this is my story. I am also one of the lucky ones too, with mine recovering quickly – 80% better I’d say within 3 weeks of diagnosis. Will continue to follow and support Facial Palsy UK in the future as they are an invaluable resource!

  3. Interesting blog thanks David. I have permanent palsy on left side of my face caused by my facial nerve being badly aggravated during surgery to remove a brain tumour. I’m 3 years post op and have really only just recently come to terms with my face. I felt like I lost my identity and the mental side of that journey is tough. I’m also now permanently deaf in my left ear due to the tumour (an acoustic neuroma in case any fellow sufferers here?) and so there has been lots to get my head around. The positives however have been a new found respect for life – cliche as that seems – and realisation that although essentially our faces are what we think of as ‘us’, we are so much more than that and choosing to not let my palsy define me was the most liberating mental adjustment I’ve made. This hasn’t been an easy journey or one I would choose to repeat but it has taught me a great deal about myself and my strengths. I miss my smile more than I could ever express to be honest and I’ve accepted that only I have the power to control how that affects my life.

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