June is probably my favourite month of the year. Not because it’s my birthday month – that’s July – or because it’s the start of summer, but because it’s both Pride Month AND Scoliosis Awareness Month.
Not many people seem to know about scoliosis awareness month. I haven’t heard anything about it since I left the online scoliosis community a few years ago. It was all over the place then – I even made some YouTube videos to create awareness (they tanked). You may remember an act on Britain’s Got Talent a few years back called Mersey Girls. They were a dance group who wanted the prize money to pay for one of the girls’ private scoliosis surgery. The ordinary NHS surgery would have left her unable to dance again, but in America, the surgery they offer would have given her more mobility. They didn’t win, but Simon Cowell paid for the surgery anyway.
So what is scoliosis?
Put simply, scoliosis is a curvature of the spine from side to side, often accompanied by a twist. It is possible to have up to three curves, and it can be extreme enough to limit breathing and displace internal organs. It is more common in women, and onset is most commonly found in the teenage years and in the senior years. The cause is unknown, although it has been known to run in families, like mine. I suffered – and still suffer – with it. My curve (pictured in the X-ray above, on the left) was seventy-three degrees, which is pretty severe. In 2017, I had the curve somewhat straightened out in what is called two-stage spinal fusion surgery.
That’s the short story, anyway. Time for the long one.
In 2016, I was having a horse riding lesson when the instructor called me over to tell me that my body protector (a solid vest, a bit like a police stab vest) was not fitting properly. It was sticking out on one side. We took it back to the shop, where it was quickly established that it wasn’t the body protector that was off, but my back. One of the ladies in the shop gave me the number of her chiropractor, with whom we managed to get a next-day appointment. She took one look at me and said, “You’ve got scoliosis, and from what I can see it’s quite severe.”
From there, it was a visit to the GP to be formally diagnosed and referred to the Royal National Orthopaedic Hospital in London. In my first appointment, they took X-rays and told me I’d need surgery when I was fifteen or sixteen. That was a couple of years away – I was thirteen – so I felt reassured. In the meantime, I’d need a back brace. However, when I next went back, I was told that the curve had progressed so quickly that I’d be needing surgery in a matter of months. A few scans, a few hundred blood tests and one back brace later, I got the dates of my surgeries: 5th and 12th June, 2017.
Hang on, TWO surgeries? I hear you ask. Yep. Two surgeries. Having the spinal fusion done in two stages is less common than one stage, but that was how mine went. Time for the technical stuff. Skip ahead two paragraphs if you’re squeamish.
The first stage is called anterior release. They went in through the side, between my ribs, deflated one of my lungs, and took out a piece of rib and a spinal disc to make me more malleable. They then re-inflated my lung, put a chest drain in to stop fluid getting into my lungs, stitched me back up and left me in bed for a week, unable to get up or indeed sit up at an angle of more than 45 degrees. It’s sending shivers up my spine just talking about it now. Cue one of the hardest weeks of my life. I remember, on my second or third day, sobbing to my mum, “Everyone around me is getting better and I’m just stuck here!” Because I felt pretty much fine – just very tired and unable to get up. I was very, very glad when 12th June rolled around.
So, at time of publishing, it will be exactly five years since I was in surgery having the second stage done: the actual spinal fusion. They inserted that piece of rib where the spinal disc was (which is called a bone graft), then straightened my spine out, holding it in place with two rods, (I think) fourteen screws and a number of hooks. Both surgeries took around six hours each.
From there, it was a stay in ICU, a night in HDU and four days on the ward relearning to walk before I was allowed home. I had strict instructions, one of them being that for the next three months, I could not raise my knees above my hips, else I risked pulling the metalwork that was in the lumbar section of my spine. That meant I had to sit on cushions all the time, and I couldn’t bend down to stroke my cat – which nearly killed me!!
I felt like a zombie for the next six weeks, not helped by the fact that my school sent tutors to try and keep me up to date with my schoolwork. It didn’t work and I missed the first part of my GCSE courses – but I worked hard and ended up getting good grades, so it worked out. These tutors actually hindered my recovery: they were in two-hour slots, one a day, at a time when I could only really be out of bed for an hour or two at a time. The day we waved the last one goodbye, I could physically feel myself recovering. I don’t know how to explain it… I could feel myself getting stronger, and feeling brighter. A couple of weeks later, I went on holiday, and was able to be out of bed for longer. I clearly remember the first day I spent completely out of bed, with no rest. I was in Bournemouth with my parents and some family friends, and it was the first time I felt like I could get my old life back.
(Spoiler alert: I did, and I didn’t. But that’s another blog post for the future. Subscribe if you want to hear about that.)
Why am I talking about this now? Well firstly, as I said, June is scoliosis awareness month. But, like I always say about Pride Month, it shouldn’t be restricted to just one month. Everybody should be aware of scoliosis – and its partners in crime, kyphosis and lordosis (where the spine bends forwards or backwards, respectively). Both of those also require a form of spinal fusion surgery. Before I was diagnosed, I had no idea it existed. If I had, I would have known the signs. I would have seen my upper body curving. My first awareness of it was that when I stood in front of a mirror with my arms by my sides, I had a huge gap between my right arm and my right side, and none at all on the left. If I’d have known about scoliosis, I would have identified it and taken myself to a doctor. I might not have needed the surgery at all. But for something that affects 4% of the population – although less often to the extent mine was – it is very rarely talked about. That’s why I was so delighted when Mersey Girls featured on Britain’s Got Talent, because for a brief moment everybody was talking about scoliosis.
So, reader, I am imploring you: make this the new equivalent of that audition.
…Okay, maybe that’s overestimating things a bit. But please do share. Not just on your business Twitter or other socials, but on your personal ones too. If I’d have seen something like this six years ago… I could have been saved from so much pain and heartache.