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What Nobody Told Me About Scoliosis

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I was diagnosed with scoliosis at a rather young age. I was 7 years old when I received my first back brace. I have Marfan syndrome; scoliosis can be a characteristic of this disorder, although you can be diagnosed with scoliosis without having Marfan.

No one told me I would need to buy all new clothes. My mother had to go out and buy all new pants and shirts for me. My clothes were too small to fit over the brace. It should be something completely obvious, but it is probably the last thing you worry about until you receive a brace.

No one told me how uncomfortable the braces are. It literally feels like I’m living with a hard plastic tube around my entire abdomen.

No one told me what kind of pain I would experience after surgery when I had rods placed. It is horrible pain. It took me months to get back to my pre-surgery self. It was the worst surgery I have ever had. I can compare it to heart surgery, foot surgery, and two c-sections, because I have experienced all of these, and still feel confident that without a doubt my back surgery was the worst.

No one told me what life will be like years later after having rods placed. I have had my Harrington rods for almost 20 years. The first 10 years I had little to no pain. The past five years have not been so pleasant. Scar tissue and arthritis have wreaked havoc throughout my back. I am in pain every day.

Scoliosis can cause major medical damage if left untreated. I would love to live life without the experience of scoliosis and back surgery. However, I do have this disorder, and I was able to have it properly treated. I am extremely grateful I live in a time that the capabilities to treat it exist.

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Image via Thinkstock Images

Originally published: November 28, 2016
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