June is Scoliosis Awareness Month; here’s my back story
Iowa recognizes June as National Scoliosis Awareness Month.
Scoliosis is a medical condition where an individual’s spine is curved from side-to-side forming a “C” or “S” shape. According to the American Chiropractic Association, nearly 7 million Americans have scoliosis.
There are two types of scoliosis: idiopathic and congenital. Idiopathic scoliosis develops when a child is older. Congenital scoliosis is a curvature of the spine that the child is born with.
My congenital scoliosis was found when I was born 11 weeks early.
Among all the tests and scans my premature two-pound, three-ounce body endured, a simple X-ray discovered my crooked spine.
My vertebral column is “S” shaped mainly due to a few extra vertebrae that formed within and around my spinal column.
My back caused me no pain, but by the age of two, I was limping slightly and my right shoulder was beginning to curve upward and inward as my spinal curve worsened. My parents were forced to make the heart-wrenching decision of agreeing to have my first spinal surgery performed.
Mom and Dad were warned by my orthopedic surgeon that if I did not have the surgery at two, I could be in a wheelchair by 10.
My first memory ever is of bending down over my hospital crib and dropping toys on my mother, who was sleeping on a cot below.
The room was dark, and out of the light of the hallway flew in a woman, spotless in all white, who proceeded to hold me down while another woman in white tied washcloths around my wrists and ankles to keep me still.
It was just hours after an incision had been made down the entirety of my back and my lower vertebrae had been fused together.
I do not remember the pain, or crying as I was fitted for my brace, or how my mom became an expert at finding outfits that were cute yet baggy enough to hide the plastic brace that I wore post-operatively for two years.
I do, however, remember the pain quite well of my second surgery when I was 15.
I admit I was shocked when my orthopedic surgeon seemed to suddenly announce I would be having another surgery the summer after my freshman year of high school.
It was fall, and fall called for my yearly checkup.
I was used to the routine of donning a hospital gown and backing up against the cold X-ray machine. My shoulder blade always connected first. Then I would gingerly press my back against the metal.
Then, I would turn to the side with my arms out in front of me, hands clasped above my head.
I had performed this routine my entire life. But this year, I had grown and my X-ray results revealed that my curve had worsened over 10 degrees since my last visit.
Any curve over 50 degrees warrants surgical intervention.
Less severe scoliosis can often be corrected with braces over time.
My upper curve was 67 degrees and my spinal rotation was threatening my lung capacity and heart function.
On July 11, 2000, a titanium rod was attached to my upper curve with seven large screws. I spent a week in the hospital, where a majority of those days I was in the ICU battling pneumonia.
I learned how to balance on my feet again and relearned how to walk. I went to physical therapy to practice using stairs and walking steadily.
Once I was released, I was issued a wheelchair for long excursions out of the house. But, mainly it sat at home as I took walks to ease the pain and to regain my strength.
By summer’s end, I returned to theater and dancing. I swam again. A year later, I returned to downhill skiing. I hung out with my friends as if I hadn’t just gained the ultimate accessory in a giant new scar. My life unfurled forward as it should have.
Scoliosis never held me back.
Now, 14 years later, I do have some pain. But, I am the mother of an energetic 2-year-old and am seven months pregnant with our second child.
There is nothing I can’t do besides skydive or bungee jump. And thank goodness I have no interest in either of those things.
I enjoy life. I am grateful that my curved spine is no longer compromising my organs and that my spine has ceased to continue curving since my rod was implanted.
Most scoliosis cases cannot be diagnosed based on pain. I was never in any pain until long after my surgeries.
This month, although schools do check children for scoliosis, I urge you to become aware of the symptoms of this condition.
Look for the telltale signs of uneven shoulders and shoulder blades, one hip higher than the other, a larger gap between the back and arm on one side, and a visibly crooked spine or twisting torso when the child bends over.
Early detection is key to care.
Often, non-surgical correction can be used when found early enough.
Scoliosis is not a disease or handicap.
To me, it has shaped who I am, and I wear my scars like a badge of honor.
Andra Kucerak Guccione is a Jefferson resident.