Ron Bryans describes the dramatic chain of events that led to his facial palsy – without ever destroying his appetite for life, or his sense of humour.
Chapter 1: Ten seconds
I was a healthy, active man, enjoying tennis and walking, eating and drinking with friends, and spending long periods in our mountain retreat in France. A successful trombone player, I worked with all the major symphony orchestras, and played on film and TV sessions.
I was 52 when, in October 2005, I became aware of a tingling sensation in my tongue and some irritation of the gum around a wisdom tooth. The dentist sent me home with some mouthwash. In December the discomfort increased. My GP said there was a little inflammation and prescribed antibiotics. I asked if it could be something more sinister; the unpleasant sensations I was having seemed to tie in with symptoms of cancer I’d read about on the internet and indeed on the dentist’s surgery wall. This idea was dismissed, and off I went.
By February 2006 the discomfort had increased. Further visits to my dentist and GP resulted in more antibiotics, the removal of a wisdom tooth and confident denials of my fears. I had a strong feeling that there was something seriously wrong. The lining of my mouth had turned black and seemed to be eroding away. The discomfort became pain. By May I was finding it hard to eat and lost a stone and a half in a month. Finally the dentist referred me to a specialist.
On June 8th I had an appointment with a maxillofacial consultant. In 10 seconds, he diagnosed a ‘T4 N1 retromolar and tonsillar squamous cell carcinoma’, a cancer growing from my mouth into my neck. I sat there in disbelief, and went home clutching a couple of prescriptions. I remember thinking, ‘Is this all I need to cure cancer?’
Things moved pretty fast and I entered the life of a cancer patient. My radiotherapy and chemotherapy finished at the end of October 2006. (There’s a lot more detail about this period in a blog written by my wife: http://theirishpatient.blogspot.co.uk).
Chapter 2: Cheese on toast
By spring 2007 I was able to swallow again. It felt as though my mouth had been burnt so anything spicy or acidic, including fruit and booze of any kind, was, and still is, too painful to eat or drink. My salivary glands were damaged so food had to be soft and heavy on the gravy.
I happened to be seen by a visiting consultant from China, a specialist in osteoradionecrosis (ORN). This is the death of bone tissue as a result of exposure to radiation. Because of the delay in my diagnosis, my radiotherapy was at full blast. He warned me that I was particularly likely to develop ORN.
In late September 2008 I was having a lunch of soggy cheese on toast with my wife (she ate the crusts) before an appointment with my consultant. Whilst munching, there was a ‘phewitt’ sound in my mouth, and I knew my jaw had broken. I felt no real pain, just a weird feeling that something was out of place. The consultant diagnosed ORN. The radiotherapy that had killed the tumour was now killing my jawbone.
A DCIA free flap was quickly arranged, and in early January 2009 I was in surgery for the transplantation of part of my pelvic bone to my mandible. It’s a double-whammy of an op, deeply invasive and lasting some 10 hours. Sadly I contracted MRSA in the neck wound during the procedure, meaning that the transplant didn’t work. I was in hospital for a month, and to this day I still suffer severe neuropathic pain (a pain perceived by the body, seemingly for no reason), probably due to shock experienced during surgery.
Later, sinuses opened on my neck, oozing pus. Eventually the entire right side of the mandible had decayed and in October 2009 the condyle had to be removed. The condyle is the rounded end of the jawbone, part of the jaw hinge just in front of the ear. The main trunk of the facial nerve runs over this area and had to be pulled out of the way during surgery. Sadly the radiotherapy caused the tiny blood vessels serving the nerve to become fragile, so they were not elastic enough to withstand the stretch as the nerve was retracted. I came round with a full palsy on the right side of my face.
The consultant was certain that the nerve had not been severed and referred me to a plastic surgeon, but I was disappointed to be told that nothing could be done for at least two years.
I have had four procedures on my eyelid to help it close, including the insertion of a gold weight. It’s still not closing properly (it’s hard to get the weight in the eyelid right), and though it still looks weird, my wife tells me the droopy unclosing eye looks better than the fully open eye it was at first.
I have devised my own little exercise for both sides of my face, rather than working solely on the ‘bad’ side. The boneless chewing muscles on the right pull the left side across towards it, sometimes so hard it’s as if they are in spasm. Working both sides of my face eases this. Perhaps I have been able to cope with the disfigurement of facial palsy better than most because I had already had severe disfigurement due to my surgery.
The picture above is of me trying very hard to raise my right eyebrow and keep my jaw central and aligned – an unusually straight face!
Chapter 3: A French crêpe
Lunch in France in July 2011… This time I was eating a crêpe when there was a very loud ‘thwack’ from the left side of my jaw. The ‘good’ side of my jaw had broken. An X-ray in a local French hospital confirmed the break. (Cost of an unscheduled X-ray appointment in a ‘private’ hospital in France, including a disc to take away: 25 euros. Total time spent in the hospital: 50 minutes. Amazing.)
In great pain, I returned to the UK and to hospital where a theatre gown was waiting for me. As a temporary measure a plate was inserted to hold my jaw together. It improved the pain enormously, so we went right back to France.
In October, another ‘flap’ was fitted: the fibular from my lower leg was used to form my new jawbone. I now have a jaw! Unfortunately, during the op something happened to my tongue and I have not been able to swallow properly since. My speech is also slurred and unclear, though practice and determination mean that it’s improving. Shame really as talking, eating and drinking were amongst my specialist skills and pleasures! I manage small sips of water, but dribble most of it down my shirt. So I’m back on the dear old PEG tube (a feeding tube inserted into my stomach) for a third time. A big positive is that the op has had the effect of bringing the neuropathic pain down to manageable levels.
I still play a bit of tennis, go walking, and love chopping wood for the fire. I’m involved with the local Allotment Society, and teach and look after the computers of the local ‘Silver Surfers’. I also volunteer for Headstart, the head and neck cancer charity I’m heavily involved with, that covers Kent and Sussex. For me the facial palsy was a real kick in the teeth coming on top of the challenges of cancer. However, I am a robust kind of a chap, and I don’t let it stop me.
10th May 2012
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: 23-10-2016 || Next review due: 23-10-2018