29 October 2018
For parents of young children who have recently been diagnosed with scoliosis – the abnormal, sideways curvature of the spine – it can be a daunting prospect knowing that their condition will not improve without treatment. For children diagnosed with juvenile idiopathic scoliosis, which typically affects children between the age of four and ten years, the likelihood is that the condition will worsen over time. With such a high risk of progression, seeking treatment early can pay dividends.
One of the common misconceptions about scoliosis is that the only solution to correcting a curve is via surgery. In just nine months, one seven-year-old patient has proven it simply isn’t the case.
Strictly following her nine-month Schroth physiotherapy home exercise programme – and finding time to fit in her Capoeira and swimming classes three nights a week too – has been a challenge, but one that she has taken in her stride.
Her parents were alarmed at first: “We spent the whole night looking online for scoliosis treatment in the UK when she was first diagnosed,” says her mother. To get some more information from others going through the same experience, her father who “had never been on Facebook before” signed up because of his daughter’s scoliosis in order to find out more.
After their search on Facebook and elsewhere online, they came across the London Orthotic Consultancy’s clinic in Kingston, not far from their home, and quickly decided to book an appointment. Her mother says in just nine months, she has shown clear visible improvements.
Her improvements were even noticed by her grandmother, says mum, “When my mother visited in May for her first communion, the last time she’d seen her before that was in December and she had noticed her better posture. Even since then her posture has improved… her rib hump was quite visible then, but now if she bends over, it’s much better – it’s almost disappeared”.
Her successful results and achievements are a direct result of her commitment to the home exercises, says resident Schroth physiotherapist, after religiously doing exercises four days a week after school typically, “it takes an hour and forty minutes each night” says mum, “the exercises take up time and we use props” but for the brave seven-year-old, this also means an opportunity to watch Britain’s Got Talent on the iPad.
Evidence suggests that scoliosis is linked to genetics, is more common in girls and can run in families. Unsurprisingly, her mother also has scoliosis and had spinal fusion surgery four years ago, she says her negative experience with spinal surgery motivated her to get her daughter into treatment early; “the idea was to get her in so that she could avoid surgery”. Before taking her daughter for an X-Ray last year September, she recalls noticing “that her rib was pushed forward, it’s only because I have scoliosis and was operated on four years ago that I realised because I already had knowledge about it.” This is handy, being a parent, she says “even if someone is showing very small signs of scoliosis I would spot it.”
Early non-surgical orthotic and Schroth-based physiotherapy exercises are recommended if you want to avoid surgery altogether. The risk of complication with spinal surgery can be daunting, and recovery can take up to 3 to 12 months to return to normal daily activities. Her mum shares her negative experience of surgery, “it’s been more than four years and I still feel a lot of pain everywhere; my neck, shoulder blades, lower back - it’s not good.”
She adds, “I can drive, but not for long, I do pilates, sometimes it absolutely kills me with the pain though. I swim too, and I try to do everything I can but it’s not easy, all the time in pain. My curve was quite large.”
After both mother and daughter’s experience, mum stresses the importance of learning more about the condition, after feeling she lacked the knowledge. She also recommends that parents talk to others about their condition apart from reading about it, stating: “If they already have the diagnosis, look online and try and find other people with the condition and meet people, talk to them. Read all you can about it, as many people don’t understand the condition. Then you can get it treated”.
Schroth physiotherapy is the programme our star patient underwent, without having to use the Cheneau-Gensingen brace, which is impressive as it’s supposed to work in conjunction with the physiotherapy programme.
The exercises can help improve curve to normality and have been proven to help reduce Cobb angles without bracing. Recently, the London Orthotic Consultancy opened a Schroth physiotherapy clinic at The Portland Hospital in central London, providing patients with more choice as to when and where they can receive treatment.
My results are amazing and unexpected, and I am glad that I received the brace through LOC. I am still wearing the brace 18 months later and my back feels even straighter. Thanks to LOC I realised that I wanted to help people with similar if not the same condition as me, so I am now going to Salford University in September to study Orthotics and Prosthetics so I will hopefully be able to help others with Scoliosis as much as LOC has helped me.
If you say something is going to be easy it will be easy and if you say something will be hard it will be hard. So, I'm just going to say that wearing my brace is easy. And as it turns out, it really is.
LOC have helped remove the stress from our situation. They have given us hope based on their extensive knowledge and expertise.
I had my brace fitted and I was also given a personalised exercise programme to help with my 3D rotation. Not only was I wearing this new brace but I still had my pectus brace on and the amazing orthotists managed to combine the two so they worked together. I really struggled with this at first; however, I kept going and now I’m really glad I did. My scoliosis overcorrected by 10 degrees and I was able to reduce my scoliosis brace wear to 16 hours a day within 6 weeks.
Don’t wait. It’s about the children because they are more likely to be confident in their late teens if you act quickly and support them. We have been lucky because we understand the condition well. That’s one of the main things, to be honest. It was hard work, but it pays off in the end.
I finally found that I had arrived at the right place and something was actually being done.
My pain levels are hugely improved, my ribs were tender and now they are not. My brace was made individually for me. It’s not one size fits all and, if it is not completely perfect, LOC alters it on the spot. I was so surprised that I could wear the brace under my clothes, I did not need to go and buy anything, I just wear loose tops.
The brace is very light. Obviously, the first couple of days we were told it was going to be uncomfortable for her, I bought so many pillows! But although the first night was not very comfortable, the second night she got used to it and then she was wearing it all day long and I thought ‘that’s brilliant!’ She was only taking it off for two or three hours to go out with friends or do the exercises, but she didn’t have any problems really.
The whole experience has been very good. LOC make you feel welcome from the beginning, and you can ask as many questions as you want, and they answer everything. If you have a problem they give you their personal mobile so you can just call them if you have a problem and they’ll solve it straight away. I’m very pleased with the treatment, the people, with everything.
She’s wearing the brace all the time now and she’s doing very well. She’s very good at school too, the brace doesn’t get in the way of anything. It fits underneath her school uniform and you can’t see it. Sometimes I even have to ask her when she’s sitting down if she’s wearing it because I can’t see it! She says ‘of course mummy’ and I say ‘let me try!’ I have to knock through the clothes and only then can I hear she’s wearing the brace!
Obviously, the results speak for themselves. If I were to give any advice [to parents in a similar position] it would be to contact LOC. Ricarda likes it there, she loves the people and felt really comfortable, everything was really relaxed and nice.
The operation used to treat severe scoliosis curves is typically spinal fusion surgery; a major procedure that involves moving muscles and realigning the skeleton into place. The curved, deformed vertebrae are fused together into a single bone, putting metal screws and rods into the spine to help straighten it. Surgery typically lasts between 4 and 8 hours depending on the severity of the curve. Bone graft is then taken from other parts of the body and used to cover the implants.
Following the operation, it is necessary to spend around a week in intensive care before returning home and the first few days are often uncomfortable. Most adolescents can expect to return to school from 2-4 weeks following surgery, but pain medication may be required up to 6 weeks following. A full recovery from the procedure can take up to a year, as it can take that long for the spine to heal fully.
Spinal fusion surgery causes the fused portion of the back to become permanently stiff, as a result, returning to sports that require large amounts of flexibility (ballet, yoga, gymnastics, dance) or contact (rugby, football, karate, hockey) may take longer.
Risks of spinal fusion surgery are like that of any other major procedure and include infection, blood clots and anaesthesia complications. The added risks include permanent nerve damage to the spine and paralysis.