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From Scoliosis To Marfan Syndrome

I was diagnosed with Scoliosis when I was 13 years old. I clearly remember the day I had to go for an X-ray because I had been complaining of back pain, I waited a while then the consultant came to see me. I was with my Mum as he explained what was wrong, he told me I had an S shaped curve of the spine, called Scoliosis. He didn't tell me much more than that, apart from saying he'd refer me on to an orthopaedic surgeon. I went home that day not knowing what to think or feel, I was just a 13yr old girl who didn't understand any of this. 

The day came when I had to see the Spinal Doctor & I went along with my Mum & Dad and had some more X-rays, then I saw the consultant who told us my curve had progressed since I saw the first doctor a couple of months earlier. He told me I actually had a double curve which was aggressive & would need operating on, he said it was strange to be so severe at my age, usually Scoliosis can be treated with a brace & physio, but I needed surgery almost immedietely. He explained what that would entail and I found it a scary prospect as I'm sure my parents did too. I was booked in for surgery 3 months before my 14th birthday. 

I had 2 rods inserted at either side of my spine, held in place by a number of bolts & screws, the operation itself was a success, my spine was significantly straightened. Recovery was a long road though & much worse than I could've anticipated. After 5 weeks in hospital, I came home but was still unable to do anything other than lie down most of the time as sitting up caused too much pain & dizziness. I was told the dizziness was brought on due to the fact that my body had undergone a massive shock during surgery. After around 6 months, I was better able to manage the pain & my dizziness subsided as I slowly started getting back to some form of normal. 

Living with rods in my spine was hard to adjust to but I was becoming more used to it. I wasn't totally pain free but I could bear with it. My spinal surgeon did tell me all that before the operation, he said the aim was to straighten my spine because it was pressing on my vital organs, it wasn't to cure me of all aches & pains. As time has passed the pains in my back have worsened because some of the screws at the top of my spine are protruding more than they should be, so no matter where or how I sit, I'm always in pain from my neck to around the middle of my back. 

At my last check up my Doctor said although it's not an ideal way to live, it's better left alone at the moment as even though my screws seem to be loose & protruding, they are still holding my rods in place. An operation to try replacing them could end up doing more damage than good & it's possible that I would end up needing to have the full operation done again because everything is at risk of loosening once they touch the screws. On top of pain caused by bolts & screws, I also have left over nerve pain at the bottom of my back, if you don't know what nerve pain feels like, I would describe it as a painful pricking sensation. 

It's a depressing thought knowing nothing can ever solve my back problems but I try not to let it get me down too much. I deal with it by resting a lot as that's the only thing that helps to settle my pains a little. I have to be careful how I move, if I happen to make a wrong movement my screws feel like they are about to pop out, which then causes agony for the rest of the day. I can't bend at all either as it's not really possible with rods at either side of my spine. Having said all this, I dont regret having my Spinal Fusion, without it I might not be alive now as the curve was pushing into my lungs, making it hard for me to breath

The operation definitely changed my life though. It definitely made things more challenging, but since then I've developed a few more health problems so I'm getting more used to living with difficulties. I found out that my Scoliosis was a symptom of a more rare condition that I didn't know I had until a couple of years after my surgery, called Marfan Syndrome. It's the reason I've suffered with health problems since being a small child. Marfan Syndrome is a rare genetic disorder that only affects 1 in around every 5,000 people. Rarely, a person can be affected spontaneously, meaning there is no family link which seems to have been the case with me. I thought being diagnosed with Scoliosis was scary, but finding out I had a severe & rare condition was even scarier. 

I live with a lot of chronic health problems now as a result of Marfan Syndrome, which aren't easy to cope with but I think the psychological effects have been the hardest to deal with. It has made me feel isolated being the only one in my whole family to have a rare condition. So now I'm waiting to see a therapist which will hopefully help me come to terms and deal with all the upset caused by my health


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