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  • Shock

    I was told yesterday that my curve had advanced 20 degrees in eight months, from 23 to 53. I have a genetic disorder called Marfans Syndrome that can cause this. My orthopedist said that I would have been an inch taller with a recent growth spurt, but it all went into the curve. I am schedualed for an MRI on tuesday, and if my back doesnt make another big jump, i should be able to hold off surgery for another 6 months. I go back to see him in 3 weeks, and if its above 60 degrees by then, he says we will have to do surgery soon, causing me to miss school, and have to be home schooled for a period of time. I've never stayed in the hospital overnight before, never had an MRI, and i'm just feeling a bit scared. After all, I'm only fourteen, and my orthopedist told me just six months ago it looked like we'd be able to slide by without surgery. I'm already working with the Physical Therapist to help the back pain, but I cant help feeling.. what if something goes wrong? everyone says my orthopedist is the best there is, but still..

  • #2

    Hi Jess!

    My name is Brandon. I am 13 years old. I have marfan's syndrome. I was diagnosed with scoliosis in March 2003. I started wearing a Boston Brace in May 2003 for 22 hours per day. My doctor said that my curves could get worse while wearing a brace simply because of marfan's.( I have grown about 6 inches since I got my brace.) My lumbar increased to 44 was 35 in just 3 months.

    My doctor recommended another brace but stated that I could need surgery later.