I am 61 year old woman and have been living with AS for just over 40 years. While on holiday this summer I had an accident in which I fractured a bone in my neck. I'd like to share the lessons I've learned from the other experience with other NASS members just in case they are useful. When I write them down they seem blindingly obvious but at the time they were not.
was visiting friends in Brighton when it happened. I was offered a choice of bedrooms and elected to stay in the one with the bed on a mezzanine level. While climbing the open plan staircase to the bed, I lost my balance and fell over the side from a height of about four feet, landing heavily on my bottom. I was carrying a light rucksack, a radio and a glass of water.
Lessons I learnt from the accident
Sometimes it's better to suppress the child in us in the interests of safety. Anyone climbing an open plan staircase with long term AS should be aware of the risk of falling.
Even if you're genetically programmed to carry everything all at once - don't - it might be safer to make several trips.
Diagnosis and treatment after the accident
The local A&E team x-rayed me and diagnosed a hairline fracture in my pelvis. The treatment was rest, painkillers and a Zimmer frame to help me get around. Despite searing pain between my shoulder blades and a neck which was flexed forward, the doctors could find nothing else wrong.
The next day I notified my rheumatology consultant in London but heard nothing back from her. Three visits to the local NHS Walk-in Centre over the next 10 days resulted in more and more pain medication but no reduction in the pain between my shoulders, nor a change in the position of my neck.
My rheumatology consultant contacted me immediately she returned from holidays, recommended a CT scan and offered to facilitate this for me. The CT scan at University College Hospital in London showed an unstable fracture of my C7 vertebra. I had been unaware that I had broken my neck for three whole weeks. Within 36 hours I was in surgery. A titanium cage and plate now hold my spine together around the fracture and my bone is fusing with it. When we spoke later my rheumatologist told me that I was the third AS patient she has come across this year with a serious injury which went undetected for several weeks.
Lessons I learnt about diagnosis and treatment
If you're in pain something is wrong, persist - in retrospect I should have insisted on an x-ray of the top of my spine.
Don't just contact your rheumatology consultant but also make contact with his or her secretary. My consultant told me that her secretary would have referred my email immediately to one of her registrars so that I could have been seen earlier.
There is no clear indication of how long my recovery will take. I have been advised to take it gently, not to set unrealistic personal targets and to listen to my body.
Since then the only real set back has been that I was advised to start taking anti-inflammatory drugs, only to discover they do not work alongside the painkillers I was taking, resulting in a week of nausea, appetite and weight loss and stomach cramps. Rather than face a winter with creaking joints, I asked to see a doctor who specialises in pain relief. She prescribed patches which deal with the pain around my injury and paracetemol which takes the edge off the arthritic pain.
On my to do list I still have to set up some gentle hydrotherapy sessions to strengthen my neck muscles. I also want to talk to a nutritionist about how to put on weight without furring up my arteries.
It's three months since my operation and I'm making progress although it seems slow. I have a gentle daily exercise regime. I go out when invited, usually chaperoned, but occasionally on short bus trips on my own. I do a roaring trade in lunches, teas and suppers courtesy of lots of visitors and on-line grocery deliveries. Next year I hope to be able to start work on a part-time basis.
Lessons I learnt about recovery
Keep a record of the questions you want to ask the doctors, and the ones your family and friends ask that you haven't thought of. Ask them until you get answers but don't be surprised if different branches of medicine have different views. If there is conflicting advice from doctors and you are in the middle of it, put them in touch with each other so that the advice you get is the best and not a decision you take yourself. Patient choice is all very well but if you're not equipped to make the decision then don't. Friends and family have good ideas and contacts, pursue them. It was a friend who suggested I talk to the pain relief doctor and whose contact found me a physiotherapist who specialises in neurological conditions, visits once a week and has devised some home exercises for me with my gymnastic ball.
Recovery is not on a straight, upward trajectory. Some days you feel better than others. Live with it. It's normal