Zoe's Scoliosis Story
I’d get yourself a cup of tea to read this as it’s a long story haha.
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So, when I was 12 in 2013, my mum was taking up one of my dresses
(I’ve always been small so this was quite a common thing) and she
noticed that when she pinned the dress in a straight line in looked
wonky when I wore it. Very confused by this, she looked at my back
and noticed that my spine didn’t look normal – it wasn’t straight, it was curved. This came as quite a shock as neither of us knew anything about scoliosis or that having a curved spine was even possible.
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After a lot of research and speaking to the GP, I had an X-Ray of my back and an appointment in London with a paediatric scoliosis consultant. I was diagnosed with Adolescent Idiopathic Scoliosis (AIS) – this type of scoliosis usually occurs during puberty and has no known cause. I had an S-curve, right thoracic measuring 30 degrees and left lumbar with an unknown measurement, I just knew it was smaller than the thoracic curve.
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The consultant reassured me and told me that my growth plates were almost together so the curve wouldn’t progress any further and I wouldn’t need monitoring. He said I could just go on with my life and that I wouldn’t need surgery. My mum and I were relieved and as people who didn’t know a lot about scoliosis, believed the consultant, so for 7 years I wasn’t monitored, and I didn’t have any X-Rays.
Fast forward to 2020, the pandemic hit and I was forced to do my first year of university at home completely online. I started to get major discomfort in my neck; every evening I would be in so much discomfort, my neck would feel so tight and any pressure on it would feel so uncomfortable. I started to see an osteopath regularly who helped massively but suggested that I should have another X-Ray.
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At the end of 2020, I had another X-Ray and a zoom appointment with a different consultant. My scoliosis curves had increased – my thoracic curve was now 40 degrees (a 10 degree increase) and my lumbar curve was now 30 degrees. These numbers meant that I was now “on the threshold” for major spinal fusion surgery. I started crying and the consultant didn’t seem to understand why I was reacting like this. Before this appointment, I knew there was a chance that I was going to be told that I needed surgery but I knew I was going to refuse – mentally, I couldn’t put myself through this. After making this clear to the consultant, he said that there was another option and that I could try scoliosis specific physiotherapy – why he didn’t start with this I’ll never know!
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Anyway, after finding out that the NHS doesn’t do scoliosis specific physiotherapy – the only option was to pay (a lot) for private scoliosis specific physiotherapy. I had an intensive physio course in the summer of 2021, and it was honestly life-changing; my physio explained what scoliosis was and what that meant for my muscles in my back and gave me the tools to feel confident in exercising. Before this period, I didn’t exercise other than occasionally going for walks - my lifestyle was very sedentary, and I would do a lot of sitting around watching tv. Part of this was due to not knowing what exercise was safe for my scoliosis and being scared to do anything that might make it worse. It felt amazing to be moving my body and I felt empowered that I understood my back.
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At the start of my physio course, my physio took measurements of my scoliosis curves, height etc. and did the same thing at the end of the course. Amazingly, I grew a cm over the course of a few months! It makes sense as if you think about it – scoliosis is like having a squashed spine and it you decrease the curves then you’re also lengthening the spine. My course ended and I was told to keep this up I’d need to do 30mins of physio everyday for the rest of my life – this sounded like a lot but to me as long as it didn’t involve major surgery, I was happy.
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A year later, I had another scan of my back under another different consultant and was told that my curves had stayed the same! There was no more progression, no more increase and the consultant told me that my scoliosis had stabilised! He then discharged me – not sure why as even if my scoliosis was stable at this point that doesn’t mean it will stay stable forever and really I should still be monitored but I won’t go into that now.
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My back stayed manageable for a couple of years whilst I lived at university and I was quite active and had a much busier lifestyle – I did my physio as much as I could but I struggled with motivation and it was never really a priority despite knowing how much it helped my back.
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In July 2023, I graduated from university and started working full-time at The National Autistic Society. My job involved travelling into London by train twice a week and working at a computer Monday-Friday. Very quickly, my back started to feel really bad and in October I had to take 2 weeks leave from work due to how bad it was. I was in so much pain, my whole back has seized up from the top of my neck all the way down to my pelvis. I started getting nerve pain in my ribs to the point where sometimes I wouldn’t be able to move my right arm as it was so painful. It was really scary as although I was told that my scoliosis had stabilised, I was still “on the threshold” of needing surgery. I started trying to do my physio regularly but my back was so tight that it almost felt like it was making it worse so I booked in to see an osteopath again.
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This osteopath, who works at The Centre for Complementary Health was incredible and although the first few sessions with her were painful because my back was so tight, she managed to get my back to a much better place. She recommended that I start doing Pilates classes so I had a look to see if there were any scoliosis specific classes and found an online one. I went to my first class in October 2023 which sparked my love of Pilates and idea to become a Pilates instructor.
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Having scoliosis is a journey; sometimes my back causes me no problems but other times it's painful, tight and can take a toll on my mental health. It has become a part of my everyday life and instead of letting this get me down, I want to be able to use this to help others in the same position. Find out more about my scoliosis specific Pilates classes here.