Lucy’s Scoliosis Story

My Scoliosis/Spinal Fusion Story (It’s a Long Read)

Today I bit the bullet and had my hair chopped into a very short pixie crop with a heavy fringe. It’s something I have been thinking of doing for a while now, I had a similar style a couple of years ago but I’d let it grow since then. It’s only when my hair starts to grow though that I realise how much having longer hair affects my back. Washing it becomes difficult due to the rods in my spine because I cant bend, so I’ve had to comprimise lately but that has been putting too much pressure on my screws, making them pop in & out, as well as bringing on terrible pains around my metal work. It was that which led to my desicion to go for the chop.Well that, and the fact that I like to have a bit of difference about me, there’s nothing I hate more than fitting in with the crowd, I love to stand out & I can’t do that if every other person I look at has the same, or a similar hairstyle as me. So now I’ve cleared that one up, lol, I’ll get to the main point of this blog. I thought whilst I am on the subject of my back issues I might as well take this opportunity to talk about my spinal fusion.. Put your glasses on guys it might be a long read!

When I was 13 years old I started having trouble with my back so I had to have some X-rays to find out what was going on. The doctors discovered and S shaped curve in my spine, starting at the top & making its way down to the bottom. They told me it was called scoliosis & said I’d need surgery to correct it as it was too severe to be treated any other way. Whilst I was waiting for them to give me an operation date, the curve kept progressing & I ended up with a visible hump on my back, I was breathless because the curve was pressing on my lungs and I had a lot of severe back pain. At 13 years old, I barely understood what was going on, I’d never heard of Scoliosis & never thought something like that could happen, I did know that it was serious and I can still remember the fear I felt when the doctor told us what the operation would involve. He told us an operation for Scoliosis was called a Spinal Fusion, which means 2 rods are inserted at either side of the spine, held in place by a number of bolts/screws, it’s much more complicated than it sounds.

The day before my operation I was admitted to hospital so that they could prepare me. I was very upset & cried a lot, especially at the thought of being in surgery for 10 hours! My family & I was told that the operation was a risky one, a spinal fusion is one of the biggest operations that can be done, there was no guarantees that it would go well. A few wrong moves could have paralysed me but I had no choice about having the surgery, without a spinal fusion the curve would have carried on pressing into my internal organs, which would’ve either put me in a wheelchair a long time ago, or worse, I could not even be here now. The morning after I was admitted I was taken down to theatre at 7.30, my Dad came with me & stayed until I was put to sleep. I’m sure the day was a long one for all my family as they congragated in the hospital waiting area.

I took a couple of days to properly come round after the surgery but everything went smoothly and I was moved out of intensive care after 48 hours, although I was unable to move for another week, and even then it was only slight movements. On top of all the pains I had coming from my back, I also had to deal with the pain of 6 broken ribs! The surgeon had to break them during the operation. I spent a long 4 weeks in hospital & I can’t really say I improved a lot during that time. Recovery was slow, slower than I expected, well actually, I don’t exactly know what I expected, it was the first time I had ever experienced anything like this.. I was a 13 year old who thought everything was very black & white.. I’d have the operation, recover quickly, come home & be back to normal. That was what my head thought. The reality was very different though!

I was very glad to be discharged from hospital after 4 weeks but that didn’t mean I was fine, far from it actually & it took me a long time to get back to some form of “normal” The first few months after surgery was one of the worst times of my life. Imagine having to lay flat on your back for almost 24 hours a day, apart from sitting up briefly at meal times, for almost 4 months! That was my life for a while & at 13 years old I found it hard to cope with. I was very unhappy & I can still remember how angry I felt, I couldn’t understand why this unusual thing had happened to me & I was scared that I’d never get well again.As time passed though I did start eventually adapting to the changes I had to make now that I was living with rods in my spine. I had to have physio which taught me new ways to move around, with rods in your spine, you can’t move as easily as other people can, and you definitely can’t bend down, you can try, but it hurts like hell! I slowly got the hang of how to cope after a Spinal Fusion.

At my regular check-ups the consultant told me that the surgery had been a success, everything went smoothly & my spine was visibly straighter, which I was pleased about considering I had a large hump beforehand. I don’t regret having the operation, it basically saved my life & for that I’m grateful, but in terms of back pain, it’s much worse now than it was before the surgery, this is all down to the bolts & screws, they are very protruding and you can even see them poking through my skin when you look at my bare back. There’s a lot of them & some are bigger than others, it makes everything very uncomfortable, I can’t sit up for too long without having to go for a lie down, as that’s the only thing that brings relief to the unpleasant sensations caused by my metal work. When I’m sitting down I need to have firm cushions behind me, if I don’t, my screws stick out even more & they’ll stay like that until the next time I can lie down. I haven’t yet managed to find a medication that helps with my back pains. I have spoken to other people online who have also had spinal fusions & it seems I’m in the minority yet again because most of them get on fine with their rods/screws, they can’t feel them & they barely hurt, so that’s good news for anyone who might be facing similar surgery. It just so happens that I was one of the unlucky ones.

Finally, I think I’m coming to the end of this blog but I hope it’s been an insightful read rather than a boring one. It’s time for me to go for a rest now, and time for you to take off your glasses & give your eyes a rest! Haha. I don’t know what my next blog will be about yet but I’ll try to make it a shorter one.. Thanks for reading. X x x

P.S. After reading over my blog I have realised that I didn’t mention the fact that I had to wear a brace for a whole 12 months after my operation, which helped to keep my body straight as well as hold the rods in place until everything had fused together properly. Wearing the brace was a horrible experience, it was heavy and  hurt a lot. I just wanted to add that bit before publishing this blog as the brace was a very important part of my recovery, without that I wouldn’t have been able to sit up at all.
Once again, Thanks For Reading. X

This article was originally published by Lucy on her personal website – Lu’s Life in a Blog – and has been published here with her permission.  To read more about Lucy’s amazing stories I advise you to head on over to her site.
If, like Lucy, you’d like to share your own scoliosis story please do not hesitate to get in touch via twitter, facebook, or through the contact us section of the website.
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