Sheila from Liverpool, now 53, explains how facial palsy, an understanding surgeon and cancer changed her outlook on life.
It was 1987, I was 23 and married with one child when I started getting Bell’s palsy. I had it six times during that year but each time I recovered. The doctor said there was nothing he could do for me, it’s just Bell’s palsy and your face will go back to normal. The last time I got Bell’s palsy I was four months pregnant with my second child and I wouldn’t let the doctor send me away. I told him I wanted something doing so that’s when I was referred to a Professor at my local hospital. He said he could see a tiny little white pear drop dangling in the inner ear and was going to send me for a head scan to find out what it was. That was the first time someone looked in my ear.
I had the MRI scan when I was four months pregnant and was diagnosed with a cholesteatoma, which is an abnormal collection of skin cells inside your ear. It wasn’t cancerous so it was decided I should wait until after my son was born to have it removed. Just before the operation my face had gone back to normal again and I asked, “Can you not just leave me as I’m fine now and I look okay?” The surgeon said I had to have the surgery to make sure it hadn’t spread into the root of my brain. I was lucky because it was just under the bone and hadn’t got into my brain. He told me it would have just carried on growing and I wouldn’t have been here in three years’ time.
I had the operation in September 1988 when I was 24, afterwards my face was disfigured, and it had really dropped. I lost the hearing in the affected ear because the Cholesteatoma was so entwined. I couldn’t shut my eye and it just stared open. Not long after my marriage broke down. I was told about the cross facial nerve graft operation at the time, where they take your nerve from your leg and transplant it into your face, but it was new all those years ago and I was scared of the unknown. Also they hadn’t actually severed the facial nerve when they removed the cholesteatoma so it was a big step to have this surgery with no guarantee of success and the risk of more scarring. But I still needed help and support. I had a problem because the little branches of the nerve had crossed as they’d grown back. My eye nerve had gone to my mouth and my mouth nerve had gone to my eye. I had involuntary twitching going on in my face because of this. I needed people to be there for me after my facial palsy but they didn’t understand. I put a big front on and didn’t let anyone in. They wouldn’t know I was sad. I felt ashamed of what happened to me and I felt like it was my fault and I deserved to look like this.
Over the years the man who carried out my surgery was still trying to get me follow-up care for the facial palsy. About nine years ago he referred me to another hospital to see if there was anything they could do to help. At the appointments with the new surgeon he would always say there is nothing more we can do and we will see you again in a year. I used to walk out feeling more glum than when I went in. One day I was on my way to the shop and this lad started being abusive towards me because he thought I winked at him. The way my nerves crossed in my face made one eye close when it shouldn’t and then the other eye didn’t blink. He said “Don’t be looking at me, don’t wink at me!” and I tried to explain but I started tearing up. I started saying “I’m not winking at you, I’ve got something wrong…” and I stopped because I knew I was going to burst out crying. I ran back home and stayed in then, I wouldn’t go out. I didn’t like walking out much, even before this, because I was so self-conscious.
Not long after this incident I arrived for my annual hospital review expecting to be told again there was nothing they could do and come back in another year. But there was this new surgeon who I hadn’t seen before, it was now 2008, 20 years after my operation. He said, “I can help you with your face.” I said “How? No one has ever helped me?” He said, “I can give you Botox, you will be one of the first patients that I am going to do this to.” He explained it would be hit and miss at first. The first time it was too much and my face went right over the other side and I couldn’t talk without biting my tongue. Anyway I went back over the years and as time has gone on he now knows where to put the injections and he also listens to what I think works. When I first went into his office I had hair that covered my face. I probably drew more attention to myself because you couldn’t see one side of my face and I couldn’t see where I was going properly. Then one day after my injections I decided to have my hair cut and get my hair off my face. It was amazing because what he’d done had relaxed all the muscles in my face and given me much more confidence.
When I went back for my next appointment he mentioned it. He told a room full of students, “Did you notice anything different about Sheila? She’s had her hair cut and it’s off her face. And that’s what we’ve done for her, we’ve given her that confidence by giving her this Botox.” He really had because I didn’t feel like every time someone looked at me I was just twitching away.
I’ve heard that other people are being refused funding for Botox and physiotherapy because it’s deemed cosmetic. This isn’t cosmetic at all, psychologically Botox has made a big difference to me. I probably haven’t changed in the face to people but to me I’ve changed a thousand times because I’m not twitching and I’m not walking out and getting the abuse that I did. I videoed myself one day and I realised there are still problems with my eye, but I’m not conscious of it all the time now because my face isn’t twitching so it doesn’t bother me so much. The Botox has made a tremendous difference.
In 2015 I was diagnosed with breast cancer. Even though I was wearing my hair off my face by now I still had a habit of flicking my hair back onto my face a bit when I was feeling nervous. Suddenly I couldn’t do that anymore because my hair was all gone because of the chemo. With no hair and my facial palsy I just felt ‘not normal’. Then I got some wigs and it suddenly made me realise that no one knows you’ve got a wig on and no one knows you’ve got no hair under it. I’d still got facial palsy which I’d always had but it made me challenge myself and start doing stuff I wouldn’t normally do. I’d jump on the bus with my wig on and the facial palsy, I didn’t normally like doing that. When my hair came back I thought it hadn’t really been gone that long. When you think about it and how quick it went and how quick it’s come back. I laugh now because my hair has come back curly and people go to me “Have you got a wig on?” I say, “No it’s actually my own, pull it and try!”
It’s made me realise I’ve wasted a lot of years in my life worrying about what everybody else is thinking about me all the time. It was like a full-time job because anxiety comes into it, you’re stressed and I have OCD because of it all. I kept thinking I must do this and it will make my life better. But now I’ve got through this and I’m still here and I’ve got to go and do what I want now and find happiness. It’s not going to come to me, I’ve got to go out there and get what I want. Facial palsy stopped me, it stopped me in my tracks. There’s nice people out there but there’s very harsh people out there as well. It’s made me look at life differently now. Cancer really didn’t bother me and it didn’t affect me. With cancer I was getting treated and I knew it was going, but no one was treating my face and my face was never going to get back to normal. Previous to the Botox I had given up really and never went anywhere. I’ve been on my own for 20 years and I’ve never met anybody. I want to but I always push people away. I didn’t want people to get too close and see all my scars and the things I’ve got wrong with me. It makes you that way. If it had been on my arm I could have disguised that but when people first meet you they look at your face. They judge you right away by your face, it’s the first contact.
People were saying to me, ‘it’s the biggest thing ever, cancer’, but I was saying ‘no it’s not the biggest thing ever, not to me’. I’ve got a facial disfigurement and nobody gets it, your closest family and friends will never ever understand it because they love you just the way you are. They don’t get how horrible it can be out in that world, how just one comment can make you feel. Someone said to me that cancer was a big thing and they would be there for me for that. I said that they haven’t been there for my face so why would they want to be there for my cancer? My cancer was getting better but my face wasn’t. It’s because you’re not in pain so they don’t get it. Doctors are the same, if you’re not suffering any pain they aren’t interested. It’s not right.
I was depressed in the years I wasn’t getting any treatment for my face. I had lots of counselling and I still have counselling today but not because of my cancer, because of my face. My counsellor actually asked me why I wasn’t bothered about my cancer. I said you don’t understand it’s my face I’m bothered about and this is every day 24/7 and it’s never going away. It’s never getting better and I know that now. I needed to come to terms with that. People don’t get it until it actually happens to them.
I got the all clear from cancer last year but I still have to take medication for five years. In 2020 I will be completely clear. With the facial palsy, I still have to tape my eye down some nights, every few weeks it flares up and gets sore. And I continue to get my Botox. I’ve just turned 53 and I’m getting my life back. I started finding myself again. I would like to meet somebody and I’ve realised now that I could actually go out and meet someone. These days I go out with my friends all the time and we have a really good time and I look like I’m enjoying myself. I am normally enjoying myself. Every now and again I might catch myself in the mirror or I go in the toilets and see girls putting their lippy on and think ‘why can’t I look like that?’ and I walk out and I feel like a stone has just dropped inside. But I don’t show that to my friends, I just carry on as normal. It is always there though, no matter what.
I was offered an implant for my hearing loss years ago but I didn’t want it because I wasn’t going out and doing things other than what I had to. My life has completely changed now and I go out and do things, so I have changed my mind. I’m going to have the implant later this year, I’m trialling a cross-over hearing aid for now, which I really like apart from the wire.
I don’t think the surgeon who offered me Botox ever realised what a world he was opening up for me. I’ve done so much since having the Botox, I’ve jumped out of an aeroplane and I abseiled down the Royal Hospital. Facial palsy stopped me doing a lot of things I wanted to do. Last year he put me in touch with a physiotherapist who wanted to start a facial palsy support group in Liverpool. He said he had suggested me because I’ve got so much passion to make a difference. I said to him that he doesn’t understand he’s given me that passion, he gave me the power to do this. The way he has been so caring has brought about this change in me. When I first started seeing him I felt anxious about sitting in a waiting room full of people where my face was on full view. He would schedule my appointments at the end of the day so I didn’t have to face a full waiting room. He really understands how facial palsy can affect a person and that understanding really changed my life.
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.
Last reviewed: 25-02-2017 || Next review due: 22-02-2019