Living with facial palsy
Louise Graham shares her experiences as a patient with this condition
Louise Graham, 43, is a qualified hairdresser and beauty therapist from East Sussex, with work experience in the travel industry. She enjoys socialising with her friends and travelling. Louise lives with facial palsy as the result of a tumour resection in 1973, which was followed by nine months of radiotherapy and oncology care. She is a patient representative for the International Consortium for Health Outcomes Measurement, advising on paediatric facial palsy and outcome measures that matter to patients with facial palsy. She also attends Macmillan Cancer Support care services for patients whose lives are affected by cancer, and group meetings with the charity Changing Faces for people living with facial disfigurement.
Can you talk us through your condition?
I was diagnosed with a rare form of cancerous tumour on my parotid gland when I was three months old. The tumour was removed in two operations; it was wrapped around the facial nerve and left me paralysed on the right side of my face. I was given the all clear from cancer when I was two years old. I had a happy childhood and was not aware of my facial paralysis until around the age of four or five.
In total, I have had eight surgical procedures on my face, 10 on my eye, and seven on my neck. The surgery is nerve racking because the results are visible.
I have quite good facial muscle tone and symmetry, but one eyelid cannot close spontaneously or fully blink. A weight implanted in my eyelid helps me to close it. My right eye also looks larger than my left eye. My mouth is half paralysed, and sometimes I spill food or drink from the corner of my mouth as I cannot feel the right side of my mouth, which is upsetting.
What is it like living with facial palsy?
Being facially different and living with a disfigurement is not easy: my self confidence is affected and I suffer from anxiety. It takes a lot of emotional strength to live with; I try not to be defined by it. I am a fun loving person, but you cannot hide your face. People look at me and ask questions, which makes me selfconscious. It is also a socially disabling condition as I don’t feel like going out and meeting new people. I was bullied about my face during my teenage years at school, but I was also fortunate to have a good set of friends who supported me.
My face and cheek area feel tight following muscle graft surgery, which has also corrected the asymmetry of my face. My eye gets dry as it cannot close and I manage this with eye ointment. My neck is constantly painful. I am currently having acupressure treatment at the Macmillan Cancer Support centre, which has enabled me to regain almost full movement in my neck, hold my head up straight, and correct my shoulder levels to equal height. Before these treatments I used to walk with my head tilted to my right shoulder. This was because of the painful scar tissue in my reconstructed neck area, which had restricted my range of movement.
What has been the most difficult thing about having facial palsy?
The fact that there is not an operation that can guarantee to make me look normal and that I have never had the chance to know what I would have looked like without being facially paralysed. When I was eight years old and discharged from the follow-up hospital appointments, I was told that when I was older there would be a chance of a successful reconstruction surgery, with better results than could be offered to me at that time. However, when I sought surgical options in my late teenage years, I was advised not to expect too much and that I should have had reconstructive surgery in my childhood or ideally when the tumour was initially removed and the facial nerve was damaged. I am still seeking options for further correction as I want to restore spontaneous movement in my face and eye. Previous surgeries have given me limited improvement and results have not always been permanent.
Finding the best treatment entails research. It has taken up a lot of my life undergoing so many operations and finding help within the health services. General practitioners do not always know where to refer patients. For instance, I travelled to Europe to discuss a muscle transfer operation which may have restored some spontaneous movement to my eye, and yet I was informed that it was no longer a possible option for me because of the previous surgeries. I was also informed this procedure was available locally to me. Had I been aware of all available options I would have been able to make informed choices.
There are also difficulties in the funding system for these operations and ongoing care treatments. For instance, my application for a nerve graft operation was rejected as it was labelled as a cosmetic procedure and not a rare condition. Unfortunately, many funding groups and people that make these decisions are not expert medics. It does seem so very harsh that decisions are made by strategic financial planners.
What are the most important outcomes for a patient with facial palsy?
Achieving improved appearance is very important as well as obtaining psychological care services and rehabilitation treatment to be able to manage the condition in a more complete way.
I think another important outcome is communication. I have received conflicting advice over surgical procedures and it can be difficult and stressful to decide which is the best option. For instance, I have been informed that a nerve grafting operation will restore movement to my face and eye and will not make my face any worse. Yet, another surgeon has said that it might cause further facial paralysis and abnormal movements. Furthermore, some operations are offered by some surgeons and not others, yet patients are not aware of them and their possible chances for improvement. I have also been told over the years that nothing more could possibly be done to improve my face, only to later go on and find further help.
How could people with facial palsy be better supported?
I think access to care should be easier and without so many restrictions. I was unable to continue my psychological care within one hospital centre as I had not met the hospital’s criteria for services.
Many patients do not know where to go for help—they may believe that they are unable to be helped or have any chance of facial improvement just from one surgeon’s opinion. Communication between specialists would enable patient access integrated care.
Finally, online patient support groups can be extremely helpful, so you do not feel alone and you can share your experiences worldwide and support one another with the same condition any time of the day.Alethse de la Torre, ,
International Consortium for Health Outcomes Measurement
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.
Patient consent obtained.