My Scoliosis journey…so far

I feel like my scoliosis journey really started more recently, as I start to see and understand more about how the condition affects my body. In fact, it’s likely that scoliosis started for me, as it does for many, back in my late teenage years.

Sadly, the condition wasn’t picked up by me or anyone else and it wasn’t until my early twenties, when a generic bad back sent me to an osteopath, that I found out. During my appointment, the osteopath told me that I had scoliosis.

I’m not sure that I really understood what this was at the time and I don’t remember doing anything in particular about it. I remember being very body conscious around that time and noticed that one side of my body looked very different to the other. I also noticed that trouser legs hung at different lengths on each leg, but at the time, I didn’t really make the connection. After a few weeks of treatment, the pain subsided and I got on with life.

Of course, a few years later it was back and this time I went to the GP.

I was sent for X-rays, to understand more about the curve. I never even saw the X-ray (which has since been lost), let alone get a proper diagnosis; I wasn’t referred to a specialist, instead I received a few months of physio on the NHS.

At the time, I thought this was great, the physio gave me a bunch of exercises, which I did religiously, but looking back, I can’t help but feel a bit let down by the GP. No one had taken the time to explain to me what I was facing. I didn’t even know which way my curve was bending, let alone understand the cobb angle or what I should do to help myself.

Fast forward 15-20 years and I still haven’t had a proper diagnosis. Although I am a lot better educated on the subject now.

Over the years I’ve had lots of private treatment – chiropractors, osteopaths, physios and last year I discovered a specialist Scoliosis clinic in London. I’ve spent so much time and money trying to help myself, but, in the main, these treatments are temporary and only deal with the pain: I still don’t have a base point to work from or a decent understanding of my curve.

Two years ago I went back to my GP and asked for another X-ray, as it had been around 15 years since my initial back X-ray. I remember receiving a short letter in the post confirming that I have a scoliosis, but I didn’t really understand the medical terms and had a phone call with the GP who explained a little more and then referred me to the local hospital for more physio.

I had 2 sessions there, but I was already doing the exercises they recommended, alongside regular Pilates classes, which they advised me was the best thing I could do to help myself.

In desperation, last year I went back to my GP to ask for a referral to see an orthopaedic specialist. I was told there was no way the surgery would approve my request and why did I want to see an orthopaedic surgeon as they would only be interested in surgery. All I really wanted was for an expert to help me understand my base point. What is the cobb angle, can we track the progress of the curve in case things develop more quickly and what could I do to help myself?

I left the surgery feeling quite despondent. Not really sure what to do next.

It was then that I came across Scoliosis SOS, the London-based clinic, who did help me gain a better understanding, but essentially, they teach a method of exercises as non-surgical treatment for scoliosis. What I really wanted was knowledge of my own curve.

Last week it all came to a head. I found myself unable to move. A pain in my back so bad that I couldn’t flex forward. I couldn’t reach forward for anything; I couldn’t even put my own socks on. I felt I’d reached a real low point. In 20 years, I have never felt pain like this one.

Fortunately, an excellent local physio and some very strong painkillers helped the muscles to relax enough over the course of a week to allow me to start moving more freely again.

As a Pilates teacher, it really doesn’t work to not be able to move your body!

This latest set back really spurred me into action again. With the NHS under too much pressure, especially now, I decided to look at private options. I don’t have health insurance, but I’m prepared use savings to invest in my health and to pay to speak to the right people to understand my options. I know I’m fortunate to be able to do this.

Last Thursday I had an initial consultation with Dr S Kazzaz, a consultant trauma and orthopaedic surgeon.

Dr Kazzaz listened to my frustrations about not really understanding enough about my scoliosis and I’m hopeful that he will be the one who really helps me to gain the knowledge and understanding I’m searching for. I’m waiting for more X-rays so that he can take a better look at what’s going on and we’ll take it from there, but I feel more in control and that things are heading in the right direction.

So that’s my journey so far. Lots of frustration, feeling really helpless at times, but I’ve also found a great support team at points in my journey and now I really hope I’ll get that base point and understanding that I’m looking for.

Watch this space…

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