My Scoliosis Story – Emily
Hi! My name is Emily, I am 12 years old.
I love dancing, baking, drawing and my dog Jemima!
I was first diagnosed in October 2019 when I went back to school and returned to my usual dance classes after the summer break. I noticed a twinging pain in my right shoulder, almost like pins and needles, and my ballet leotard wasn’t sitting quite right on my back. Some friends recommended a chiropractor, so we went there.
The chiropractor thought it was scoliosis and suggested I get an x-ray. My family and I were shocked to see an ‘S’ curve staring back at us from the consultant’s computer screen, and my thoracic Cobb angle was measured at just over 40 degrees. On that first appointment my lumbar Cobb angle wasn’t measured. That is how I got diagnosed.
I was 10 when I found out I had scoliosis. It really scared me, and for ages it felt like it was happening to a completely different person. A Boston Body Brace was ordered for me, almost straight after my first visit with my consultant. It looked really scary, and I didn’t want to wear it, but on the 23rd of December 2019 I went for my brace fitting. It took 2-3 hours and was an experience to say the least. I took home my brace, but because it was Christmas, I didn’t wear it until Boxing Day.
When I started to wear my brace, it was really hard to start off with, and I built the time up over the first couple of weeks. There were a few little things that I struggled with, like sitting on the floor. It took me a while to get my head around it all and find a way to do all of those little things. In the UK you can only get plain white braces, so I personalised it with some stickers. I am a big Harry Potter fan, so my mum bought some themed stickers for me.
Summer 2020 was a particularly hard time for me. It was so hot, and for some reason the Covid lockdown made it even harder. I think it was because I couldn’t see my friends or family, but everyone else felt that too. I just stayed inside quite a lot of the time, and when I was outside, I only went in the shade. I felt even more isolated when I had my brace, because it felt like a barrier to the world. With me on the inside, and everything else on the outside, it felt lonely and empty. Things I took for granted before, like a quick cuddle with Mum or bending down to stroke the dog, felt different and unnatural. I had to think about everything I did, I even had to change what and when I ate so I didn’t get too full.
In June I was told I needed to have surgery. After thinking I would have to wait even longer, I had surgery on the 18th of November 2020. This was really frightening for me, and up until when I went to hospital on the morning of my operation, I tried to forget about it and imagine it wasn’t happening. My aunty had hoodies made and gave one to each member of my family so we could be together at the time of my operation. It really helped me get through everything, knowing my family were supporting me.
After my operation I was in HDU (high dependency unit) for around 3 days. I had hourly checks, and a button that I could press for stronger medication if I needed it. That was a scary time, but I was very tired so I can’t really remember much about it. At one point the nurses thought I needed a blood transfusion, but thankfully in the end I didn’t need one.
On the 6th day after my surgery, I went home from hospital. It was amazing to be at home, and to be with my dog. I couldn’t do stairs very well, so I slept in the basement for a while with Mum. My recovery seemed very slow for ages after I came home, but now I look back on my experience and remember where I was. I am so much better than what I used to be, before and just after my operation.
I have just had my 6-month spine-versary, and I can do ballet and swimming again! My pain levels have gone down a lot since before my operation, but I still take paracetamol to school. I only use it occasionally, which is good. I also use heat pads to relieve some of my pian, and that works well.
My advice to another scoliosis warrior would be to keep going. At times I felt like I wanted to give up, to go back, to give in. It sounds like something my parents said to me, and I didn’t think much of it when they said it, but it is true, you will come out of the other side eventually. I needed to be reminded that there is a good side, you can always find a positive side to a situation.
I have an Instagram account – emily_scoliosis_2020 – where I post about my journey!
Thank you Emily for sharing your story!
Lots of Love,