The Beginning of my Scoliosis Journey

My mom noticed something was structurally different about my back when I was about 6 years old. When I was about 8 or 9, she took me to A.I. DuPont Children’s Hospital in Wilmington, Delaware where I was officially diagnosed with Adolescent Idiopathic Scoliosis. Typically, Scoliosis doesn’t occur until after the age of 10. Idiopathic Scoliosis basically means the spine curves for an unknown reason. I have an S-curve; my spine curves side-to-side like the letter S. But it’s much more complicated than that – like most others with Scoliosis, my spine also spirals slightly.

Shortly after diagnosis, I was fitted for a back brace which I wore 23 hours a day, 7 days a week until I was 14. Unfortunately, my Scoliosis was severe and rapidly changing despite the brace. In the summer of 1992 both of my curves were 60+ degrees. Spinal fusion surgery is strongly suggested for curves over 30 degrees. So, in August, 1992 I had spinal fusion surgery from T-1 to L-4 or in other words, from the base of my neck, to the top of my tail bone. Both of my curves were improved to a little over 30 degrees. I have 4 stainless steel rods which have added 4 lbs to my total body weight. (Note: The surgery I went through is an older process. Nowadays, spinal fusion surgeries are much less complicated and use less hardware.) The purpose of the rods is to hold the spine in place while live bone taken from another site in the body (mine was taken from my left hip) grows around the spine. Once the bone has  grown around the spine, fusing it together, the rods are no longer needed. However, it’s not recommended to have the rods removed; they are buried deep under years of bone growth. My doctor compared removing the rods to spelunking!

It is now 24 years later and thankfully I have not had any major complications. I am for the most part pain-free; though, I have developed other bone disorders secondary to my scoliosis and spinal fusion. I will discuss those in a future blog post.

These two x-rays were taken in 2005:
(Ignore the weird discolorations! I took photos of my x-rays against my windows.)



I took these two photos today, October 19, 2016:


I stood as straight as I physically could for these photos. I centered the blue cross on my neck. As you can see, my Scoliosis affects my entire skeletal structure. I am 5’5″ but I estimate without my scoliosis I would be about 5’9″. I tell ya what – it’s a pain in the rear to find clothes that fit properly!

I have many more stories and information about Scoliosis to share, so stay tuned! 🙂