My Marfan Experience- Scoliosis #MarfanMonday
It’s Marfan Monday and to start off these posts again I thought I would introduce myself a little. I’m Shona and I’ve been volunteering with HMSA for a little while but recently I became their Marfan ambassador. I will be striving to make sure that Marfan is well addressed and I’m looking forward to being able to represent my condition and raise awareness. To kick things off I thought I would talk a little about my experience of scoliosis, one of the conditions that I have developed as a result of having Marfan syndrome.
My C shaped curve was spotted by my Mum in my early teens and thanks to information provided by places like HMSA we knew that it was a problem that could potentially develop so we went off to my local GP. Despite a lot of doctors not having a great knowledge of conditions like Marfan the particular one we saw knew enough to know that I definitely needed a referral to a spinal deformities surgeon to learn more about my curve. The first x-rays I had showed that my curve wasn’t too big and would only need monitoring as I grew older, it was assumed that I probably wouldn’t need any kind of intervention as they thought I had nearly finished most my growing.
However, by the time I had my next set of x-rays I was suffering with bad back pain. The scans showed that my curve had significantly progressed within a very short space of time and even to this day my doctors aren’t 100% sure why this happened, every case is so individual so there was no concrete answer. I was sent off for some MRI and CT scans and despite being told that I probably wouldn’t need any intervention, surgery was planned. I had my spinal fusion in December 2013, it’s coming up to 3 years since I had my surgery now. I found the surgery to be a lot harder than I had expected but at the same time I don’t really remember much of it, especially the worst parts. The pain was bad and the recovery was tough but in the end it did turn out to be the right course of action for myself. I did end up having a few complications which required a second smaller surgery but nearly 3 years on I can say that I’m glad that I made the decision to have my curve corrected, it was the right decision for me.