Emma from Lincolnshire describes how it has taken ten years but she is finally starting to get some movement back in her face after facial nerve damage.
It was 2001 and I was 18 years old when I began to feel that something wasn’t quite right. My hearing wasn’t as good in my right ear as it had been but I’d been ignoring it for a while. Eventually when I realised the problem wasn’t going away I made an appointment with my GP. I didn’t have headaches or any other noticeable symptoms; it was literally just problems with my hearing in the one ear. For a year I kept going back and forth to the doctors for investigations, they even tried different types of hearing aids but nothing seemed to work. Eventually, twelve months later, it was decided I should have an MRI scan. The results of this showed I had a tumour larger than a golf ball growing on my hearing nerve!
I was told I would need some surgery to remove the tumour, or as much of it as they could, and it was also explained to me about the risk of damaging the facial nerve because the tumour was pressing on this area. I didn’t fully understand what was happening but I do remember feeling supported by the hospital at this time. I was made aware of charities such as BANA who help people affected by acoustic neuromas, but I didn’t feel any need to rush out and get extra support.
I was aged 19 when I had the first surgery to remove the tumour, it was now 2002. This surgery only partially damaged my facial nerve, so the effects of facial palsy were not so pronounced then. However, I was continually monitored to check whether the tumour was growing back and unfortunately it did, and not only that but it was twice the size it was before! I had to have more surgery in 2004 and this time the facial nerve was severed completely, but at least I was a bit more prepared this time around.
The damage to my facial nerve meant I was unable to smile and I now had a real problem with my eye, I was unable to blink or fully close it and there was no feeling in that side of my face. This meant that my eye was getting dry and I couldn’t feel it. People with sensation in their eye will feel it getting sore and know they need to put some drops in, but I don’t have this warning system. I have to check in the mirror regularly to see if it looks red and I have to remember to put eye drops in throughout the day and at night. One of the things I don’t like is when I cry, I feel like I look weird because one eye doesn’t cry. Because my eye often becomes too dry this has over time caused damage to my cornea which is now affecting my eyesight. The lasting effects of the acoustic neuroma are that I have lost the hearing in my right ear and my vision is also now at risk. I find it annoying that I have to pay for prescriptions for my eye drops, it’s a long term condition and I have to have them in order to save my eyesight.
I was told about options for surgery to try and give me back my smile and also they were keeping a close watch on my eye. In 2004 I decided to have two-stage surgery which involved taking a nerve from my left calf and a muscle from my thigh and transferring them into my face, this was supposed to help my face to smile again but unfortunately it didn’t work. At this time I was also under an eye surgeon and I had about ten different operations on my eye over the next ten years to try and save my eyesight. One of these procedures involved taking fat from my stomach and making a flap across my eye but it hasn’t really helped. I am still discussing options for further eye surgery to try and preserve the last of my vision. I don’t want to lose the sight altogether in my right eye because then I would have to stop driving and the implications of being partially sighted scare me more than anything.
The surgeon who performed the nerve and muscle transfer first time around was by now retiring and he suggested I consider a different surgeon who he had worked with in the past; he didn’t want me to give up on getting my smile back. However, I didn’t realise I was going to have a battle on my hands to get funding for more surgery, the answer came back that the funding was denied because the surgery was considered cosmetic. I was very angry and upset because I was forced to appeal against this decision, I was only asking for surgery to be able to smile, not to have something made bigger or smaller! Fortunately I won the appeal but if I hadn’t I don’t think I would have taken it further, it was just too upsetting having to justify why I needed this surgery.
Video below: Emma before the latest surgery
It was two-stage surgery again but this time they used muscle and nerve from my other leg, I am now very scarred! I had the last surgery in October, and in January I started to notice some little movements in my face, at first I thought I was imagining it. Six months after surgery I can finally smile, it feels quite forced at the moment but I am told this will improve over time.
Video below: After Emma’s latest surgery
I like to think that facial palsy hasn’t affected me too much psychologically or socially, I’ve never shied away from anything and it hasn’t stopped me from doing the things I want to do. I think you are in control of how much a condition changes your life to some extent. I didn’t stop going out to meet people although obviously I was nervous going on dates because you don’t know how people will react. I met my husband in 2003 and I already had facial palsy then, we met through mutual friends and he accepts me the way I am. He thinks people stare at me though, I don’t see it but he does. He gets annoyed about it, he is very protective, but I’m not worried by these things.
I was pregnant in 2004 when I had my second operation; neither the acoustic neuroma nor the facial palsy has stopped me from living my life and starting a family. Having kids stops you hiding from things as well; they are always so open and honest. My son came home from school one day and said that someone asked him “Are you going to the hospital because your dad doesn’t like the way your mum looks?” He said he didn’t know how to reply and I explained that people will always say silly things and you can’t take everything to heart. I said they could just as easily have said something about me if I was overweight.
I don’t really have any photographs of me since the facial palsy and I’m not keen on having them taken, although I don’t mind looking in the mirror. These days I am more outspoken, I tend to call a spade a spade and live more for the moment, so if having an acoustic neuroma and facial palsy has affected me in any way then it is that. What is strange though is my reaction to my smile starting to come back; I’m finding it hard to believe it’s really happening. I can see myself and feel the movement, but I keep expecting it to fail. I’m scared to hope it is definitely finally working. I had adjusted to having facial palsy and it’s actually quite traumatic to suddenly be smiling again.
I currently work as a secretary at a local hospital; I’ve been there for four years now but have had different jobs throughout my various surgeries, including public facing roles such as a receptionist. I haven’t found it difficult to get jobs but at interviews I have been up front and explained what happened to me. I don’t consider myself disabled so cannot tick that box on a form but I do consider myself to be different. I look different so of course people are going to be intrigued and wonder what happened to me or what is wrong with me. I find if I am up front about it then it relaxes other people, if you are shy and try to hide away I think it makes you feel worse.
It wasn’t until recently that I met someone else with facial palsy for the first time and I’m not really sure it would have helped me to meet others with the condition when I was first affected. I am a fairly philosophical person and tend to be quite accepting of what life throws at me, I think having a positive self-image has also made a difference to how I coped.
Looking back the only thing I am frustrated about is that it took so long to get the initial acoustic neuroma diagnosis; it shouldn’t have taken so long to diagnose and it would have been nice to not have such a prolonged period of worry when I knew something just wasn’t right.
Video below: seven months after Emma’s latest surgery
I’ve had a very positive experience largely due to the fact that I have mainly been looked after by health professionals with lots of experience in this field. When you have facial palsy it is an evolving process and you need monitoring to see how things are going post-surgery or to see if further improvements can be made. It’s not a condition where you can just leave people to get on with it. I also have to have an MRI every five years to check the tumour hasn’t grown back. What I would say to people is that things can change if they want them to. My latest surgery is ten years after my facial nerve was completely severed, it has taken all that time to get some movement back. Don’t ever give up hope.
Update
Emma has kindly been a media volunteer for Facial Palsy UK raising awareness of facial palsy. A quote from Emma was featured in the Guardian in 2014.
Bell’s palsy: putting on a brave face
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.