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Alex B. | Scoliosis Patient

Hi, my name is Alex, I am 15 years old. My story begins when I was in the 3rd grade. I had been having breathing issues for a few months, which we found out may have been caused by a slight case of asthma. When going through all the tests, x-rays were taken of my lungs and that is when the curve of my back was noticed.

I was referred to a Dr. Mendez, in Fargo, ND by my pediatrician. Several visits to Fargo, ND, x-rays, & MRI’s later, Dr. Mendez determined that my curve of the back (scoliosis) was due to me having Chiari 1 Malformation-and that surgery would be needed. This was meant to stop the progression of my scoliosis and hopefully to help it in not being as severe and allowing my spine some growing room. Dr. Mendez had informed me and my parents that in the future I would have to have another surgery.

2005 – Surgery took place and was a success; they did what was called a Chiari Decompression. I was placed in a Milwaukee Brace for several years after to assist my spine to go the right direction, up not crooked! The brace was uncomfortable and it was hard to sleep in, but with time, it became part of me and I grew to get used to it, not like it!

The time had come when Dr. Mendez said that due to the curve of my back, a brace would not be sufficient – and a surgery would have to be done, at that time my curve was over an 80-degree curve. I didn’t feel any pain during this entire time, but more of insecurity due to the physical appearance. I continued to play basketball, but was never really able to keep up as the curve was getting worse, which was starting to compress on my lungs, so I would get out of breath very quickly.

Dr. Mendez recommended Dr. Lenke as being the best doctor in the country for the type of surgery I would need. My family and I made several trips to St. Louis to see him prior to my surgery-and each time an x-ray was done, my curve was significantly getting worse. If you’re wondering why we waited to have the surgery for a few years after it was discovered, they wanted my body to grow as much as possible, my parents are tall, my mom is 5’9 and dad is 6’2.

Step one was Halo placement. End of August 2009 (I just started my freshman year of high school for 3 days) then we left for St. Louis. I was admitted to Shriners Hospital for Children and that is where I had the halo surgery. It only took about 45 minutes. When I woke up, it was awkward at first, but I quickly adjusted to it. I had therapy twice a day and was able to continue with school so I wouldn’t get so far behind. During my free time, Recreational Therapy room was my 2nd home. Everyone at the hospital was nice, caring and very fun to be with. It also made me feel like I was not the only one in this situation, I met many other kids, some much younger than I was in my situation. I was in my halo for 6 weeks, during that time, the halo, as if my brace became a part of me. It actually felt good to have it on, as it stretched my spine, which would give it more flexibility during the surgery that was to come.

Mid October, surgery was set. I left the Shriners Hospital and went over to Children’s Hospital – was nervous but excited that it would be over with. The surgery was an 8-hour process, they put me out and the next thing I knew it was over. I was pretty much medicated and out of it for the first day or two but after that I was moved over to my own room to begin the healing process so I could go home. I had physical therapy twice a day, which never hurt but I was nervous about falling…they were always there and I never fell! Each day I got stronger and more independent and the next thing I knew we could go home. It was a 1500-mile trip home, which my mom and dad and I made in 1½ days. I was encouraged to do some walking each day, and to be working my way to the independence I had before. The healing was slow but sure.

We had a follow up appointment in January 2011 in St. Louis, Dr. Lenke was pleased with the way things were healing and that everything was going well-I grew 2½??? just from the halo placement and surgery. I was able to start school again, and slowly get back into the normal routine of a freshman.

October of 2011, I had my one year check up, and I got the ok to begin to play basketball, running, snowmobiling and car racing.

Would I do this all over again? YES. Did I enjoy every minute of it? No, you need patience and confidence, but was it worth it in the end! Thank you to everyone – Kathy, the nurses, the physical therapists, the residents – Dr. Jones & Dr. Glattas everyone at Shriners Hospital too…I made many friends and am thankful for that.

THANK YOU…Dr. Lenke – words can’t express what you have done for me.