Scoliosis Stories

Written by a Teen for Teens

                                              Diana's Story


 ***NOTE: I live in a European country that is not as developed in scoliosis treatment as the United States, so we don't do school tests for it or anything (even though I go to an American school, weird, huh?). And finding a good doctor is incredibly difficult***
My name is Diana, I'm 13.
I always knew I had some form of back problem. Ever since I was an infant (yes, I fell over when having to sit down and had to be propped up), I've been told to "stand straight! Put your shoulder up!" etc. I got dragged to a ton of doctors, each having their own opinion on what exactly I have. Since I was still little at the time, I had no idea what all those fancy words were and waited for the conclusion, which was more-or-less always the same: physical therapy. I've been doing exercises like stretches ever since, and every doctor I went to seemed to diagnose me with something else. I even went to a different country for an opinion!
When I was seven, I was told I had to wear a brace for "hyper-lordosis". It hurt, and I refused to wear it, then I grew out of it and everyone pretty much forgot about it. Later, getting dragged to all kinds of doctors, every one of them said I don't actually have that, I have scoliosis and they just have to "watch and wait". My mom kept on dragging me to anything that would help: chirotherapy, the gym, and more doctors. Finally, I met the doctor that I have today. He made me do the "bend over" test, and for the first time ever, he measured the curves on my x-ray and took a good look at them for about half an hour.
I apparently have Scheuermann's kyphosis which is a disease that makes vertebrae look like wedges instead of rectangles and makes me have a hunched back. (It's way more common in boys than girls but I still have it.) I've had it since birth and my body also developed a lot of weird scoliosis-like curves to compensate. So while you can't really tell my back looks S-shaped unless I wear a really tight shirt and my spine is showing, I look like I have permanently bad posture and "standing up straight" makes it look even wonkier. My curve is 41 degrees and it will progress at about 1 degree per month without a brace, and at 50 I'd need an operation. I now have to wear a Boston brace that goes from the top of my ribs to my hips with an added metal rod thing that ends in a heart-shaped pad that pushes on my chest. I have to wear it every day for 22 hours without fail, and I have to do physical therapy for one of them. The other one is either my PE lesson or a shower (or both if I shower quickly). While I fought to not wear a brace six years ago, I'm going to do it now because I'm really scared of an operation.
So I went to a "ortho-technic specialist", basically a doctor that makes braces.I got measured for one (with a tape measure). They tried the "module" they had on me (a module is a big, rectangular "draft" of the brace which they will carve down to make my own custom brace) but it was too small and it hurt a lot so they placed an order for a bigger module. It should arrive within two weeks and I'm going on a car trip all through Europe in three weeks so I hope I get used to it well enough for me to enjoy it and not think about my brace constantly. Also, I'll have to wear it for 22 hours right away so I'll wear it to school for every day of eight grade, so I hope it's not a bother for me or looks funny. I won't mind if anyone sees it, because I wear braces on my teeth and little kids always ask what they are, and when I explain they make my teeth straight they just say it's cool so I don't think it will be too different.
When I get my brace and come back from the trip I'm going to continue my story and post pictures, because it's totally different than any of the pictures you already have!

 Thank you so much Diana for letting me post your story!