My name is Katie VanderKooi, and I’m a 21 year-old spinal fusion survivor! I was diagnosed with idiopathic scoliosis when I was 6, after telling my parents that my back hurt. It was mild (with one 18 degree curve), so the doctor told us to keep an eye on it. Nothing needed to be done. Then in 5th grade, x-rays showed that I had two curves of 23 and 30 degrees. My doctor told us that I would need to wear a Boston back brace for 23 hours a day. The first week was difficult, especially the first few days. It was hard to breathe and move, and the brace left red and purple marks. But soon, it became a normal part of life for me, and I didn’t notice it much.
In 8th grade, I began experiencing severe pain in my hip shooting down my right leg, mostly in the middle of the nights. My thigh started going numb, and we found out that my brace had been pinching a nerve in my hip. My doctor adjusted my brace by putting a hump on each hip area, and eventually the pain and numbness went away. As the years went on, my curves gradually progressed, but surgery never crossed my mind. Finally, in 10th grade, I was told that surgery was most likely going to be necessary. The news hit us pretty hard at first, because we never expected to hear that. Playing volleyball and the piano meant so much to me, and suddenly they were being put on hold—for a very long time, and possibly forever with volleyball. But I kept wearing the brace until 11th grade, and life went on as usual.
During my last 2 years of high school, it became hard to breathe when playing sports, and I had back pain on a daily basis. So during my senior year of high school, I had my spinal fusion on November 17, 2009 (after volleyball season), with 52 and 57 degree curves. I was really nervous about my surgery, but God gave me peace that only He can give, and He brought me through each step of the way. I also had the support of my family and so many friends at my church and school. My surgery took place at Shriners Children’s Hospital in Chicago, and my surgeon was Dr. Kim Hammerberg. I couldn’t have been happier with his work and the hospital’s care. I now have two 18-inch titanium rods in my back with 18 screws. Now the curves in my back are only 22 and 20 degrees! I can’t bend my back anymore, but that still leaves me with so much to be thankful for!
So after about a week in the hospital, we traveled 3 hours home. As the piano accompanist for our high school choir, I made a goal to be back to school to accompany for our Christmas concert, since that’s what I loved to do. It was hard, but one of the most rewarding times of my life! Soon I worked my way getting back into school. Since then, I’ve had many great opportunities. I’m back to playing volleyball. I wasn’t expecting to be able to play it competitively anymore, but I was chosen to be on the 2nd All-Star team as a freshman in college less than a year after surgery. Through my blog and YouTube video, I’ve come into contact with many other teens with scoliosis and mothers of kids who have it. A group of college students and I were able to provide Christmas music for patients and workers at the Shriners Children’s Hospital in Greenville, SC. Soon after that, friends and I put on two fundraising concerts for the Ronald McDonald House Charities (where my parents stayed during my week at the hospital), raising almost $2,000. I love to volunteer at RMHC whenever I can. And now I teach 3rd-4th grade general music, give piano, flute, and clarinet lessons, and coach JV volleyball. In the future, I plan on continuing the fundraising concerts, as well as starting my own chapter of a scoliosis support group. I’m so thankful for my spinal fusion, because of how it has helped me physically, what I’ve learned, and the amazing opportunities I’ve had because of it.
Katie: You are a beautiful and inspiring person…Thank you so much for sharing your Scoliosis Story with us!
Debbie Ordes, President Global Scoliosis Foundation