Ten years ago, an operation left Sylvia with facial palsy. Emotionally and physically drained, she suffered from delusions and depression. She then decided to undergo facial reanimation surgery, and narrates her chaotic experience.
My name is Sylvia and I am approaching my 31st birthday. I live in South London and supervise a team of teaching assistants in a large state comprehensive. I enjoy visiting museums and galleries, travelling and spending time with friends and family.
At the age of 20, I was diagnosed with an acoustic neuroma – a brain tumour, which had been growing undetected for five years. Looking back, there had been lots of warning signs: very bad headaches, bad balance and depression. The turning point was during my first year of university when my eyesight rapidly deteriorated, eventually resulting in an appointment at the local eye hospital. A routine check-up turned into a lengthy consultation and I was referred for a brain scan back in London a few days later, which revealed a large acoustic neuroma. I was immediately admitted onto the neurosurgery ward. After two days of intensive testing, I had a shunt inserted to drain the fluid off my brain. For the following three days I experienced acute levels of discomfort and was told that the procedure had not been successful, so I had to have a second operation.
After the second operation I was physically and mentally exhausted. I was told by the surgeon that I was going to be sent home to recuperate because I would have to undergo a complex 12-hour surgery to remove the tumour. I would also have muscle grafted from my right thigh to fill the area that would be cut out. I was warned that post-operatively, I would be completely deaf in my left ear and that if the facial nerve was severed, I would lose movement down the left side of my face and it would be distorted. It was also very likely that I would lose the ability to feed, move or talk without medical assistance and that the chances of surviving were 50:50.
I was discharged after this meeting, and during the following night I experienced traumatic delusions. My parents attempted to calm me, but I had been taking large doses of steroids to shrink the tumour, and morphine, which contributed to my traumatised state of mind. I was readmitted the following day, and two days later I experienced a series of disturbing delusions which resulted in my being transferred to a neuropsychiatric ward where I was heavily sedated for four days. I was prescribed a range of antipsychotic drugs and remained on the ward for another six days. Throughout my time in hospital, I received a huge amount of support from family and friends.
The tumour was removed on the 26th September 2002 and during the operation my facial nerve was severed, resulting in extensive paralysis on the left side of my face. I was unable to close my left eye and my left tear duct no longer functioned. This is still the case and I have to use eye drops hourly. I was discharged nine days later. At that stage, no support or counselling was offered.
At home I became anxious and was prescribed a tranquilliser. I was physically very weak and had no concentration. Between October and December 2002 I became increasingly depressed, and in the new year I thought about committing suicide and went as far as making preliminary plans. I was otherwise incapable of making decisions. My GP referred me to a counsellor who was newly qualified, and inexperienced in providing counselling for facial disfigurement and post-operative trauma. In April 2003 I had a minor relapse when I had one short delusional episode.
In January 2003 I met a private physiotherapist who had been recommended to me by the British Acoustic Neuroma Association (BANA).Under her guidance I began an intensive regime of physiotherapy including the use of a neuromuscular stimulator.
I returned to university in September 2003 to begin my second year of study, although I was still feeling emotionally vulnerable. Throughout my time at university I had regular check-ups. I asked advice about further surgery to reanimate the side of my face affected by the palsy and damaged facial nerve. I had several consultations with a plastic surgeon to have my face assessed and to be informed about the procedure and outcome of the surgery. I was shown photographs of patients who could smile and respond to emotion as a result of the surgery. Although I thought the procedure described sounded very invasive, I was told that the success rate was higher in young people and since it was presented as the only option, I decided to go ahead by putting my name on the waiting list.
In February 2005, I had the first stage of the facial reanimation surgery. The surgeon grafted a length of nerve from the back of my right leg onto a healthy nerve on the right-hand side of my face which was tunnelled across to the left side. I returned to university on crutches after three or four weeks despite complications with the area round my right ankle where the nerve had been removed; it still continues to give me discomfort. I was told the second stage of surgery would take place in 12 to 18 months depending on whether the first stage had been successful.
I graduated in June 2005 with a 2:1 and spent the next year working as an event co-ordinator for a large corporate responsibility charity in central London. I needed to put in the extra time as I felt (and still do) that I had to continuously prove myself because of my facial disfigurement. I was also volunteering at the weekend with a local charity providing activities for young people in the area, and doing my Duke of Edinburgh Gold Award. I felt that my life was becoming more purposeful.
In the meantime my plastic surgeon retired; consequently the waiting list for the second stage operation doubled. When I met his successor, I was concerned about the lengthening delay between operations. He informed me that I could put my name on a cancellation waiting list, which I duly did.
I received a phone call at 4 p.m. on the 17th July 2006, and was instructed to arrive at the hospital by 7 p.m. the same evening. The second operation would be complex and invasive, involving the grafting of pectoral muscle into my left cheek which would be connected to the grafted nerve from the previous procedure. I was unsure about going ahead with the surgery, although I knew it was more likely to be successful the sooner it was done, and I thought it was my only option to regaining mobility on the left side of my face. I did not sign the consent form until the morning of the operation and felt uncomfortable about it even then.
After the operation I felt incredibly vulnerable and remained on the ward until the 25th July. With hindsight I think it would have been helpful if I had received a holistic assessment of my physical and mental state before my second surgery took place. I became increasingly anxious about my appearance as my face was very swollen and it remained so for many months afterwards. Despite the discomfort in my face, I motivated myself to start a new part-time job at the local secondary school. I attended regular meetings with a psychologist and once again began an intensive programme of physiotherapy using a neuromuscular stimulator. I also started seeing an alternative therapist privately.
For around five years I continued to finance private physiotherapy treatment to try and improve the discomfort of the second stage of the facial reanimation surgery. I had numerous discussions about the possibility of further surgery but was told my case was complex with no clear solution. In 2011 I had an appointment with a plastic surgeon with a specialist interest in facial palsy. He advised me to stop using the neuromuscular stimulator because it was exacerbating the bulk of pectoral muscle graft and restricting my jaw movement. He also advised me to start using a jaw clamp five times a day to widen my jaw opening, and Botox injections to restrict the signal from the grafted nerve to the grafted muscle, to improve mobility and reduce muscle bulkiness. This strategy produced the most significant improvements to date. (At the same time, I am concerned about the long-term efficacy of the Botox treatment because I feel so dependent upon it.)
I hope that in the future a more sustainable treatment or surgery will become available for patients that are experiencing discomfort following facial reanimation surgery. My advice to other patients would be to always seek a second, and preferably third, opinion from clinicians before making a decision involving complex and invasive surgeries. Don’t underestimate the physiological impact facial surgery can have.
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.