The prospect of a spinal operation for their daughter led one family to seek out an alternative treatment
SCOLIOSIS is an abnormal curvature of the spine. More common in girls, the condition often occurs at the start of adolescence.
Parents are often the first to spot it, noticing that their child’s shoulder, shoulder blade or hip is higher or more prominent than the other, that their clothes aren’t hanging properly on their bodies or that they are leaning to one side.
The story of the Dempster family from Northern Ireland is typical. While checking for a rash on her daughter’s body, Amy Dempster noticed that seven year-old Rachel’s ribs were protruding on one side.
Amy took Rachel to the doctor and later an X-ray revealed an S-shaped, 58 degree curve of the spine. Rachel was diagnosed with scoliosis.
“I’d never really heard of scoliosis,” says Amy. “Rachel loved trampolining and dancing. We had no indication that anything was wrong.”
In cases less severe than Rachel’s, the condition can sometimes correct itself as the child grows, but in about 10 per cent of occurrences, a back brace is recommended to prevent further curvature. The brace is continually worn while the child is still growing – until about 15 for girls and 17 for boys.
However, the degree of curvature of Rachel’s spine was high, especially for one so young. It’s estimated that in about three out of every 1,000 cases of scoliosis, where the curve is greater than 50 degrees, damage to the heart, lungs and severe back pain can be a possibility.
Rachel fitted this profile and her consultant recommended spinal fusion surgery. Using this technique, Rachel’s spine would be straightened with metal growing rods that would be changed as she grew.
It was likely that she would have to return every six months to have the rods lengthened by about a centimetre to keep pace her growth.
She would also be required to wear a brace to protect the rods which would eventually be removed when her spine had fully grown.
“The prospect of several operations just seemed too traumatic,” says Amy Dempster. The family looked for alternatives and came across a UK clinic that offered non-surgical scoliosis treatment.
The Scoliosis SOS clinic in Suffolk claims that 88 per cent of patients who complete their course of exercise-based treatment are able to avoid spinal fusion surgery.
Amy made an appointment and in September 2006, she and Rachel attended the four-week residential treatment programme.
“Rachel had to take the month off school, so it was a big commitment,” says Amy. “The focus was on practising very specific exercises and breathing techniques.
“It was quite hard going mentally and physically, but everyone at the clinic was very positive and showed us how the spine worked.”
The clinic was founded by Erika Maude, herself a scoliosis sufferer, in 2006. When at the age of 16 with a 42 degree curve she was told that surgery was her only option, she sought alternatives.
Finding that the renowned Katharina Schroth physiotherapy clinic in Germany had a nine-month waiting list, she attended Dr Manuel Rigo in Spain who was also committed to non-surgical treatment.
After four weeks of intensive physiotherapy treatments, Maude says her spinal curve declined by seven degrees. She says she was determined to bring the treatment to the UK and Dr Rigo agreed to train her.
“Mainstream orthopaedic communities in the UK tend to push surgery,” she says, “but other countries are more open to physiotherapy.”
Employing five physiotherapists and an osteopath, she says the clinic has now used its ScolioGold method to treat 570 patients from young children to people in their 80s.
“With scoliosis, the muscles tend to be overworked on one side and tight on the other,” says Maude.
She says the Pilates-like exercises and controlled breathing she teaches over the four-week treatment period works the small muscles in the back to reduce the curve.
The programme costs £2,950 (€3,584), which Maude says, at about £25 (€30) an hour, is reasonable for physiotherapy treatment.
She admits that the majority of orthopaedic surgeons are “sceptical or not interested” in her methods, “but some are becoming more open-minded and acknowledge that other things are working”.
The Dempsters’ experience of the treatment is positive. On returning from the clinic, an X-ray showed that Rachel’s curve had reduced by 10 degrees.
Now aged 12, Rachel does the 40-minute programme of daily exercises proscribed for her by the clinic. The clinic has also advocated a brace which she’ll continue to wear while she’s growing.
Rachel’s last X-ray in September 2009 showed that her curve had declined to 32 degrees. “We’re aware that the curve might go up again during puberty,” says her mother, “but she’s grown 25cm since she was diagnosed, so we’re hopeful.”
The Dempsters go back to the clinic twice a year where Rachel is assessed and her exercises are adjusted. Her mum says that while high-impact activities such as the long jump and trampolining are out, her daughter leads a normal life.
“Spending a month away from home was a big commitment in money and time,” says Amy, “but it’s meant she’s avoided numerous operations.”
Senior chartered physiotherapist at Cappagh National Orthopaedic Hospital, Neil O’Mahony, acknowledges that in countries such as Germany and Sweden, there is a wider variation in the treatment options for scoliosis patients.
While he believes that surgery is still the most sensible choice where the curve is progressing rapidly or if the child is still growing, he says other cases are not as clear-cut.
“If the curve is progressing slowly and is on the lower end of the spectrum, there isn’t consensus on how best to treat it – it’s the classic divide between surgery and physiotherapy really,” he says.
He says that bracing is the only non-surgical treatment that has a good body of evidence behind it and that while physiotherapy may work, the profession sometimes doesn’t have the hard research to back it up.
Regarding the work at the Scoliosis SOS clinic, O’Mahony says he would “keep an open mind on it”.
In general, he says he’d like to see Irish physiotherapists being more involved by consultants and in taking a role earlier in the treatment of the condition.
“But as physiotherapists, we also need to provide more documented research to back up what we do. This can only be good for our profession.”
