This lack of consistency in the treatment of scoliosis is one reason why SAUK is hosting Britain’s second International Scoliosis Awareness Day next Saturday, to raise funds for more medical research into this distressing condition.
Scoliosis occurs when the spine curves visibly to the side instead of being straight. There may be just one abnormal curve – or two, as in my case. The cause is still unknown but the condition develops in one in 250 children and teenagers in Britain, commonly appearing between the ages of 10 and 16. Experts widely agree it is partly genetic, although how much environmental factors or hormones play a part is uncertain, with teenage girls four times more likely to develop the condition than boys. Scoliosis sometimes corrects itself with time, but if severe, it can cause serious problems later in life, including crushed lungs, walking difficulties and chronic back pain.
Counsell explains that scoliosis is underfunded and under-researched in the UK, and that back bracing is controversial. In 2010, a review of literatureby the independent Cochrane Collaboration found there was only “low quality evidence” for bracing; by contrast, a separate US study published last year said there was “compelling” evidence that it works. In the US, a saliva swab test is available, which predicts with 99 per cent accuracy whether a teenager’s scoliosis will progress. Those with a high test score are advised to wear a brace, so that at least those whose scoliosis is found to be stable need not try one. The test is not offered on the NHS, says Counsell, because it’s too costly.
In the hope of eventually developing a successful treatment – or to prevent the problem developing at all – researchers are now focusing on identifying the genes involved in the development of scoliosis. David Polly, an orthopaedic surgeon at the Scoliosis Research Society in America, argues that the condition is likely to be caused not by one gene mutation, but by several. “It is likely to be highly complex, and we could be another 20 years away from solving it,” he says.
He points to a genome-wide study of the common variants associated with idiopathic scoliosis in China, based on 12,000 patients, with promising results. “But it’s probably going to take data based on 120,000 patients to have any real meaning,” he says.
Until then, teenagers with scoliosis are left with the uncertainties of back bracing – and as a last resort for more severe cases, surgery. By the time I had my operation, aged 19, my S-shaped spine was so bad I had a small hunchback on the right making my rib cage stick out. I also had regular back pain and was told that if I didn’t have surgery, I could end up in a wheelchair.
I had a 12-hour operation, called ”spinal fusion’’, during which the surgeon broke my spine in several places, along with my entire right rib cage, and manually remoulded me into to a straighter shape. To keep it all in place, two large titanium rods were placed on either side of my spine and screwed into place. I was flat on my back for two weeks afterwards, and because the lungs have to be deflated, I found breathing a struggle for some time.
But the operation was worth it: to this day I enjoy a near-normal level of movement. I’ve been skydiving, white-water rafting and travelled the world wearing heavy backpacks with no problems. The only thing I’m not advised to do is play contact sports, like rugby. And now I’m eight months pregnant, the rods have come in handy for helping my back support the growing baby.
Encouragingly, where scoliosis affects very young children, there has been some progress. The National Institute for Health and Care Excellence said this month that a new treatment, which involves remote-controlled growing rods, should be considered by the NHS for young sufferers aged two and over, to ensure the condition does not get worse.
Hilali Noordeen, consultant spinal surgeon at the Royal National Orthopaedic Hospital, is the first to use Magec (Magnetic Expansion Control) in Britain, and has to date fitted around 100 children with the rods. Previously, young children needing surgery required surgical incisions every six months to lengthen the rods as they grew. Now this remote device adjusts the length of rods using magnets – sparing the emotional trauma of repeat operations.
Mr Noordeen is hopeful that one day, children and teenagers diagnosed with scoliosis will be able to pop a pill to make it all go away. He assures me “it’s not out of the realms of possibility”.
“It’s possible with gene splicing. If we identify the one or two genes responsible for scoliosis, then there are means of changing the gene structure – that’s not impossible.”
Until then, children and teenagers in Britain with scoliosis are faced with few options on how to treat the illness.
SAUK’s International Scoliosis Awareness Day takes place on Saturday, June 28.
Louisa Peacock: My bracing treatment for back pain
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