'I have been on a seven-year back odyssey,' says Madeleine Holt, as she hangs from a set of wall bars to demonstrate her daily back exercises. " When I was 14 and diagnosed with scoliosis, I felt quite excited – I was special. But then later on, I realised what it really meant."
What it would mean for her was years of chronic neck pain, thousands of pounds spent searching for a cure and a whole year of wearing a brace round the clock – even on television for her job as Newsnight's culture correspondent.
Scoliosis – an abnormal curvature of the spine – affects three or four children in every 1,000. It gets worse with age and can be identified by the Adam's Forward Bend Test, which used to be common in school medical exams; the patient bends at the hips, with the feet together and the arms hanging down. The tell-tale sign of scoliosis is when one side of the back is higher than the other.
Scoliosis is more common in girls, who account for eight out of 10 cases; there is also a genetic link, with 25 per cent of sufferers having a relative with spinal curvature. The measurement of the curvature is called a Cobb angle, an angle of 10 per cent being mild and 90 per cent severe.
The traditional treatment for scoliosis is a back brace, which limits the angle of curvature, or, in more extreme cases, surgery to insert metal rods in the spine. The latter became more commonplace after the invention of the Harrington Rod, which was inserted into the back and fused to the spine, holding it straight. Although modern implants are more flexible and are extendable, surgery for scoliosis carries the same risks as any other.
"I was fine until I was 27," says Holt, now 42. "I was working as a reporter for the BBC, and there was a lot of standing around and then sitting at a computer. Considering my condition, it was probably the worst job I could have had. I started to get chronic pain in my neck and upper back, which would start after I had been sitting or standing for 20 minutes. The only thing that helped was either a hot bath or a stiff drink."
By the time she was 34, the pain was unbearable and, worried that it would be difficult to have children and continue working with the condition, she embarked on a mission to find an effective treatment. "I found a clinic in Louisiana, which promised to eliminate pain and straighten your spine. I went to the States four times and spent thousands of pounds having a fibreglass brace fitted from my hips to my shoulders, which I wore for 18 hours a day. I would wear it while I was interviewing people on television."
After a year, this had little effect, so Holt went back to the NHS. "The consultant laughed when he saw the brace, and said that scoliosis doesn't cause pain; he said that any pain I was feeling was psychosomatic. Then he asked me if I was single or depressed. I was certainly depressed after seeing him."
Holt also went to Australia to try foot orthotics, and even bought a hydraulically powered handset, which had some effect, but didn't eliminate the chronic pain in her neck.
Then last December, Holt found out about a new clinic, called Scoliosis SOS in Suffolk, which offered the Katharina Schroth method, a physiotherapy-based set of exercises to "re-educate" the back muscles. Once they are taught the techniques, the patient must do half an hour a day of maintenance exercises.
The clinic was set up last year by 19-year-old Erika Maude (see box, below). Maude was diagnosed with scoliosis when she was 11 and found the Schroth method so effective that she established a clinic in Surrey. It treats up to 35 patients, of all ages and with varying degrees of scoliosis.
Dr Olga Gronowska-Szczecina has been working at the clinic since it opened. Originally from Poland, she practised general medicine there. "In Europe and America, it is more common to treat scoliosis with exercises rather than surgery," she says. "Perhaps surgeons here are told that this is what scoliosis is and you treat it with surgery. We have dealt with some really severe cases of scoliosis here – an 80 or 90 degree Cobb angle, and where there have been problems with the heart and the lungs. Some patients have had difficulty breathing, but with this method there has been great improvement.
"There has also been improvement with pain management. It is not true to say that scoliosis doesn't cause pain. Those that come to the clinic with pain usually leave without any. There is really not enough attention paid to this condition in this country. A comprehensive screening programme using the Adam's Forward Bend Test would be the best way to improve early diagnosis."
The Katharina Schroth treatment works with both the muscles and the skeleton. The programme consists of exercises, using props such as small beanbags, pipes, poles and wall bars to correct the typically asymmetrical scoliotic posture. Because scoliosis affects each individual differently, patients have a tailor-made exercise programme.
"It was a revelation," says Holt. "After going to the clinic for a month, my neck had de-rotated by two-thirds and all the pain had gone. I was two centimetres taller and I looked straighter, partly because my posture was so much better, but also because my muscles were pulling my body into a more aligned position. My spine is still curved, but is shows much less. I have to do the exercises every day, which is not easy with two small children. But it is worth it.
"One of the best things about Erika's clinic was that I met so many people who had such similar stories to mine," adds Holt. "For me, it blew the theory that scoliosis doesn't cause pain out of the water. Some of us had tried all sorts of weird things before we found the clinic; others had had surgery that had been ineffective. It was poignant at times; scoliosis often affects people who are hyper-mobile, which is another way of saying that you're bendy, so there were young girls there who wanted to be ballerinas but now couldn't because of the condition. There were people there who could barely walk. It's not cheap – it cost me £2,400 – but the results of the Schroth method are extraordinary – as long as I do my exercises, I have no pain."
The dangers of any surgery are well-documented and, even with scoliosis surgery, only 50 per cent of a spinal curvature can be corrected. In 2001, a 15-year-old boy from East Anglia was left paralysed from the chest down after an operation to correct the curvature of his spine went wrong.
Another problem with surgery for scoliosis is that the waiting lists are so long that a patient's curvature can increase significantly during that time; scoliosis usually starts to become noticeable during the emotionally awkward time of adolescence.
At the moment, there is no national recommendation for schools to test for scoliosis using the Adam's Forward Bend Test. Clinical studies in the US and Germany have revealed that the Adam's test returns too many false-negative results to be considered reliable. Whether you are tested for scoliosis in school or by your GP, currently depends on local authority policy.
"What makes me happy," says Holt, "is that I've found out that they are planning to re-introduce school nurses by 2010. The Adam's Forward Bend Test might not be absolutely definitive, but it's a good way of catching most cases early, which is vital."
The road to realignment
The Schroth method has been used with some success in Europe since 1921. The only other dedicated clinics offering the Schroth method in Europe are in Germany and Spain.
It was brought to England by 19-year-old scoliosis sufferer , who was first diagnosed around her 11th birthday, when her mother noticed a slight hump on her right shoulder when she bent forwards. It was initially dismissed by the GP, but Erika was eventually referred to a consultant who diagnosed scoliosis, and advised her that the condition should be carefully monitored.
By the time that Erika finally saw an orthopaedic surgeon at the age of 13, her Cobb angle was measured at 34deg and she was immediately fitted with a Boston Brace, which she wore for two years. A year later, however, Erika's hump had grown worse. After researching her options, in 2002 Erika took up a place at the Quera Salva clinic in Barcelona. Using the Katharina Schroth method, Erika soon halved the curvature of her spine.
Erika won a scholarship from PricewaterhouseCoopers to study Business Economics and Finance at Loughborough University. In May last year, however, she turned this down to start Scoliosis SOS.