Rosemary’s story
“Your daughter has adolescent idiopathic scoliosis. We will just monitor the curvatures with X-rays every 4 months. If the angles worsen, we will put her in a hard back brace, and if they degrade further we can always operate.”
“Such diagnoses can seem to turn the world upside down for the young patient and their family: it is hard to accept”…
Our daughter, Rosemary (Ra) was diagnosed with scoliosis in October, 2007, at age 12 ½ years.
When the lumbar Cobb angle was at 25°, we were told that if the next X-ray showed 30°, it would be a hard-brace. This thoughts purred us into action.
Local osteopaths generally showed little interest, except for one, specialising in children’s developmental conditions. We started regular osteopathy sessions. Meanwhile, we trawled the web.
We identified two main physiotherapy approaches, the German Schroth approach and the Italian SEAS approach.
Both approaches depend on an early start to treatment during the active growth phase, totally opposite to the British approach of wait and see. The Schroth exercises are very intensive, with extended exercises for a 4-6 week period, and then practising them daily on extensive specialised equipment. The Italian approach (www.isico.it) aims to modify the neuromotor and posture control, with individualised exercises taught and recorded on DVD. These are then practised 2-3 times per week for around 40 minutes per session.
The sessions with the scoliosis specialist and physiotherapists do not involve excessive costs, and the time commitment for exercises was realistic for us.
Our questions were fully answered, and sessions are conducted in English. We first visited ISICO in Milan in May, 2008 and scoliosis-specific physiotherapy exercises were prescribed, along with the SpineCor brace.
However they were happy that this modem flexible brace (based on tension bands), was obtained, fitted, and maintained in the UK.
Our specialist and physiotherapists were most impressive; their depth knowledge and understanding gave us confidence. This is a specialist centre for scoliosis, acting as a centre of excellence for Italy and surrounding countries.
Since then the lumbar curve has reduced progressively from 20° to 17°, and the thoracic curve has reduced from 28° to 16° (in the brace).
We will have to wait to see the out-of-the-brace figure when she comes out or the brace, probably in March, 2011. Ro has had to be in brace for at least 20 hours per day, with two breaks per day.
During this time, Ro has participated in all normal activities, including school hockey and tennis teams, ballet twice a week (including her grade 5 and 6 ballet exams in brace), and active holidays of skiing, sailing, and hiking.
Physical activity in the brace is advocated, to maintain good muscle tone.
We have returned to Milan at 6 month intervals, when progress has been carefully monitored, and the exercises modified.
The Milan clinic liaises with the Spinecor specialist in Sheffield who is maintaining the brace. Access to specialists with the breadth of experience of physiotherapy and a selection of specialist braces, convinced us to take this route. ISICO are very actively involved with scoliosis research, (many papers published, see www.scolioliosisjournal.com) and are fundamental to the worldwide research organisation into conservative treatment for scoliosis, SOSORT, (sosort.org)