Karen reflects on her 40-year journey with Facial Palsy caused by a late diagnosis of cholesteatoma.
Surgery left Karen with facial palsy
I woke up one morning to find the right side of my face drooping. I no longer had a normal smile. My GP diagnosed Bell’s palsy, what I am now led to believe is one of the commonest causes of facial palsy. I went with my mum to the surgery, and we were told it should get better over time.
Weeks went by without improvement and then months. At my mum’s insistence, my GP eventually referred me to a neurologist at the local hospital. I sometimes think about the neurologist who saw me and wish I could remember his name or face. It was through his skill in examination that he noted that I was very slightly deaf in my ear on the affected side of my face. Something which I was unaware of at the time. The neurologist referred me to an ear, nose and throat surgeon at the same hospital.
I had further investigations – I had an MRI scan which showed a cholesteatoma in my ear pressing on my facial nerve and causing the paralysis. Subsequently, I had surgery to remove the cholesteatoma. The initial diagnosis of Bell’s palsy being incorrect. Unfortunately, as the cholesteatoma was quite large, the surgeon had to remove all the ‘working parts’ in my ear and I am now no longer able to hear in that ear.
The hope was that the nerve would regrow, and my smile would return – it never did. The surgeon said after the operation that the blood supply in that area was a ‘bit iffy’, so that may have had something to do with it.
I was referred to a plastic surgeon at my local hospital. I was told he couldn’t help. My Mum said ‘surely a face lift’. The surgeon said my face ‘would only come down again’. So, it seemed I would just have to get on with it.
The problems with my face are ongoing. My eyelid does not close properly. My eye is either dry or watery. No one advised me on the importance of proper eye care. No one advised me on the importance of dental hygiene to the affected side of my face where food has a habit of getting trapped.
Some forty odd years later, I reflect on how it has affected my life. There are the questions and comments from mostly well-meaning people – ‘It will get better, I know someone who had the same thing’, ‘It’s what on the inside that counts’, ‘Have you got a brain tumour?’, ‘You must have done something wrong in a previous life’. Some people are embarrassed and have to be ‘rescued’ from their comments – ‘It’s ok, it could be worse, I’d rather you ask me about it…….’ I say. And, in some respects I would rather be asked. Children look and stare, but usually a simple explanation is enough. They just want to know why you look different. They’re learning about the world, and I hope in some small way they may grow up knowing that not everybody conforms to the norm.
That’s when I’m feeling brave. On the not so brave days, I sometimes feel sad. I have no partner or children. I’ve seen my friends move on. It’s difficult socially, and even more so in my younger days. Inevitably, there are occasions when I don’t feel like going to a particular social event.
More recently, a thoughtful therapist has helped me to explore my feelings and emotions, long since hidden and to look towards a more positive future. However, I sometimes wonder what life would have been like if I had received the correct diagnosis earlier. What I would have been like if my facial nerve had been saved. Just to be like everybody else.
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.