My Journey with Scoliosis

The quick somewhat disorganized story of my back issues...

When I was in seventh grade nurses at my middle school did testing for scoliosis and I was one of the lucky ones who were given a clean bill of health. Shortly after I was sitting in my doctor's office for an unrelated issue and he looked at me quizzically and said that he thought I had scoliosis. I assured him that I didn't because I was just screened at school. He sent me for x-rays and then referred me to a specialist. The specialist told me that I needed to see a specialist/surgeon. What I thought?? I went to The Spine Center in Cleveland, Ohio because they dealt with many cases just like mine every day and was diagnosed with idiopathic scoliosis. Three years later after wearing a lift in my shoe with no success my surgeon told me that I needed to have surgery or my curvature which continued to progress rapidly would cause my heart and lungs to collapse.

So the summer after my sophomore year when I was 15 years old I had a spinal fusion and a thoracoplasty (ribs were shaved from my right side and used to help fuse the rod to my spine). The surgery lasted for seven hours and I was in the hospital for a total of nine days. My surgeon fused a Harrington rod to fourteen vertebrae (Thoracic 1-12 on down to Lumbar 1-2). I had 77 staples and one stitch. I have two scars - a fourteen inch scar a little to the right of my spine and a nine inch scar on my right side.

Post surgery - my back was broken out from the adhesive that held my bandages - the little double dots along side of my insisons are the staple holes.

After surgery I had to wear a brace for six months to stabilize my back and protect my fusion. For some reason I was never given follow-up care regarding what exercises to do to strengthen my back, so I just went about my life the best I could.

Brace Side view


Back view of my brace

Two months post surgery wearing back brace - 15 year old Robin in nurses aid uniform for first day of junior year in HS.

A few years ago after enduring lower back pain ever since my surgery I decided to attempt an exercise program at a local gym. Ever since starting to exercise I have better been able to control my pain although it still comes with regularity its just not constantly severe. It is severe at times, but I work through the pain most of the time using heat, cold, stretching, exercising and sometimes ibuprofen. People most likely wouldn't know I had anything wrong with my back unless I was wearing a form-fitting top (which I don't) or baring my back which I don't except for a few occasions in bridesmaid dresses. Even though my surgeon removed (thoracoplasty) my rib hump it grew back in a very similar pattern to the previous rib hump. My surgery was done long before the information shared in the link above. Sitting against hard surfaces is uncomfortable and I often sit sideways to avoid putting pressure on the right side of my back.

Before I had my daughter I spoke with an anesthesiologist who told me that an epidural wasn't an option for me because of my rod, but God has blessed me with quick labors. My first was born in six hours, but with back labor (sunny side up) and my second came quicker in about four hours. When I had my daughter I didn't realize that I could tell the doctors what I wanted and I just obeyed their orders, but with my son when they gave me orders during labor and delivery I told them their plans didn't work for me and did what I needed to in order to manage my pain.

I've been told by doctors in the years since my surgery that I will have back pain the rest of my life because of my lengthy fusion. All of my spinal flexibility is from Lumbar 3-5 and I have some degeneration between Lumbar 4-5 which also causes pain. I think I manage quite well in spite of the limitations - I don't attempt back bends and have to modify exercises in classes that require back extensions. I feel stronger and healthier now than ever.

I continue to cling to 2 Corinthians 1:3-4 for many parts of my life. Since 100% healing hasn't happened for me I look for opportunities to comfort others in their pain. Sometimes it helps to just know that someone else understands and has been there - knowing you are not alone can really help for one who is dealing with chronic pain.