09 June 2020
It is fair to say that Venetia had been through the mill before she came to see us in March. It started about 3 years ago when Venetia kept getting bad cramps at night. Having rejected the quinine prescription suggested by her GP, the next symptoms to appear were pins and needles in her legs. For a time, physiotherapy sessions really helped - but then Venetia started to experience a lot of pain in her hips.
An X-ray showed that her hips were clear but curvature of the spine was revealed. The ensuing MRI scan revealed a trapped nerve and Venetia underwent spinal decompression surgery in September 2018. Surgery really made a difference, according to Venetia the effect was “fantastic”. However, there still seemed to be an underlying problem, Venetia’s self-diagnosis was that her ribs seemed to be impinging on her hips. By this stage her GP had run out of ideas as to how to help so Venetia referred herself to a spinal surgeon who told her she was in much too good a condition to have surgery. Instead, the surgeon referred her to LOC for a non-surgical solution to her condition.
Anna and Debs (part of our specialist Scoliosis team) saw Venetia in early March and immediately diagnosed severe Scoliosis, a subsequent X-ray revealed she had a Cobb angle of 61 degrees. LOC’s treatment plan consisted of a bespoke brace combined with a series of exercises. Finally, Venetia felt that a long-term solution had been found:
“My pain levels are hugely improved, my ribs were tender and now they are not,” Venetia says. “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.”
Venetia’s final piece of advice for anybody coming in for treatment for scoliosis is “they need to do their exercises every day as instructed and to be aware of their posture”.
We took a ‘home video’ of Venetia when she came into the clinic for a scheduled review.
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.
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.
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.
Sally and Debs 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'd highly recommend LOC to anybody. They’re just so interested, which you don't get at many places because adult scoliosis is actually a huge area but there are very few people interested in it.
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.
Debs and Sally are fantastic. I mean, they’ve become like family now. They are extraordinary people and do such good work with these kids, both of them, it’s fantastic. The whole experience has been very good. They 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. I would definitely credit LOC, but if I were to give any advice [to parents in a similar position] it would be to contact Debs and Sally. Ricarda likes it there, she loves the people like Debs and Sally and felt really comfortable, everything was really relaxed and nice. She worked really hard during training with Debs who kept saying that Ricarda was such a workhorse!