Scoliosis and Me

As a moderate to severe scoliosis (double major spinal curve) sufferer, I’ve been really touched to discover communities surrounding the condition on sites like wordpress and tumblr. If other sufferers are anything like me they will have done countless searches trying to find out how to stop their pain and prevent curve progression, mostly to find only dead end forums with users called things like ‘more-metal-than-bone’ and endless terrigying surgery pictures.

So I thought I’d share my own experience and give any good tips I come across with the hope that someone out there will stumble across this blog and benefit from it.

I was first diagnosed as a teen, and referred to a consultant who recommended we keep an eye on the curve, monitoring it through yearly x-rays and check ups – I think I had three in total. Between my first two x-rays the curve progressed a little, and between the last two no change was seen. I was told this was probably because I’d reached skeletal maturity, so my curve had stopped progressing when my spine had stopped growing. I was discharged and told further progression was unlikely, and to come back if I had any problems or pain.

Fast-forward several years, seven or eight-ish maybe, and I’ve begun experiencing pain which is slowly but surely having a debilitating effect. I find it hard to sit down for too long, to carry anything more than a rucksack with a pencilcase in, occasionally have to miss university or can’t concentrate during lectures because of the pain. Catching a glimpse of my reflection in one of those horrid mirrors in changing rooms where you can see yourself from all angles I realise that something must have changed, I’m looking wonkier than ever and when I lean over there’s a prominent bulge on the right hand side of my back. I feel like progression is obviously so slow that it’s easy to dismiss increasing levels of pain, but at this point there’s really no ignoring it anymore and I have to go back to the consultant.

My fears are confirmed when I see my x-rays . my curve has progressed from 38 degrees upper back, 31 degrees lower to 46 degrees upper back 41 degrees lower. Pretty depressing but I’m not ready to consider surgery yet and plan to explore other options first. My consultant Ian Nelson in Frenchay Bristol is outrageously unhelpful. His receptionist explains while walking me through that I should have come straight through, it’s time for Ian’s lunch break, and it’s obvious once I get in there that he’s just trying to get me in and out as quickly as possible. Offers no real advice about how to manage the pain and I leave feeling quite lost.

On the brighter side of things, on a not so fruitless google trawl I found something exciting and have recently bought a scoliosis suit from DM (dynamic movement) Orthotics, being fortunate enough to have enough money saved to fork out the £805 it costed in total. So these suits are a relatively new thing, kind of like a back brace in concept but much more practical because it’s made from a wetsuit-like material, so it can be worn relatively comfortably underneath clothes. As an adult I was initially told that being skeletally mature, I shouldn’t expect to see any actual reduction of the Cobb angles, but that the suit could be of use in preventing pain and curve progression – which I decided was good enough for me. Having spoken now to consultants, they’ve indicated that there may be a chance of reducing the curve slightly, seeing as my spine is particularly flexible, but have been very careful not to guarantee anything.

For kids though – I haven’t looked at the research myself but have heard they’ve been having good results putting kids in one of these instead of a back brace so it’s 100% worth looking into if you or one of your children has been diagnosed with scoliosis. Having probably missed my chance to reduce my curve I implore parents to not listen to consultants who are telling you to sit back and keep an eye on it as now is the time when you are able to intervene effectively and help minimise pain in the future. For those worried about the costs, it is available on the NHS in places, a ‘postcode lottery’ apparently, so make sure to see what is on offer to you.

I’m going to see how the suit works out for me and will update with news. I’m also very intrigued by the Scoliosis SOS clinic and would love to hear from anyone who’s tried it. It seems like finally practical and non-invasive solutions are cropping up and I for one am not feeling so gloomy about the prospect of getting old with scoliosis anymore.

Here are the links if anyone’s interested, and please get in touch with comments and questions.