At the age of 13, a routine school screening detected an irregular curvature in Jody’s spine. Unfortunately, a follow-up to this screening wasn’t preformed until two years later, after she had noticed her shoulders and hips were crooked in a mirror.
An x-ray and orthopedic evaluation confirmed she had Idiopathic Scoliosis but she was told that her spine had already fused, she was done growing, and nothing could be done.
Though she was also told the likelihood of progression in her curve was very small, her sagittal curve progressed approximately one-degree per year from 1987 to 2009. While she always struggled with severe back pain, she also began having significant digestive symptoms in 2009 and was diagnosed with gastroparesis.
Follow up evaluations with orthopedic surgeons determined her rotational curve had progressed to 90 degrees which was like a crimp in a garden hose preventing complete emptying of the stomach and limiting bowl function.
After trying to manage her digestive symptoms and pain unsuccessfully with physical therapy and alternative treatments, she made the tough decision to undergo an adult fusion in 2012.
To keep her from being under anesthesia for the projected 17-hour operation, two surgeons performed her 16-level posterior spinal fusion with instrumentation in 9 hours. That much time on her face still caused significant facial and eye swelling.
Scoliosis surgery as an adult has slower healing rates and increased complications compared to an adolescent.
Unfortunately, 2 of the 32 pedicle screws punctured her spinal cord resulting in a cerebral spinal fluid leak which was too large for an epidural blood patch so it took three months to heal from debilitating headaches and nausea.
Additionally, de-rotating the spine created nerve damage on the L5-S1 nerve resulting in a condition called Reflex Sympathetic Dystrophy (RSD) causing her left foot and leg to swell, burn, and have neuropathy.
Treatment for RSD included a series of steroid nerve blocks in the spine which delayed bone healing resulting in three months on a walker and a year in her brace and on a cane.
In 2013, she had surgery to remove her iliac bolts due to post-operative pain. In December 2015, her titanium rods and back broke at L3/4 and she underwent surgery again.
The second incision from her neck to tailbone caused a significant amount of scar tissue and binding adhesions making standing up straight difficult.
Because she has no movement in her entire spine, she has developed bilateral labral tears in both hips, femoral asymmetry, and exostosis on the sacroiliac joints and tailbone due the increase stress on the hips. She believes if she had received earlier surgical intervention, her scoliosis outcome and recovery may have been much smoother with significantly less side effects.
Though Jody still struggles with chronic pain and mobility limitations following her T4-S1 spinal fusion in 2012 and subsequent surgery in 2016 to replace broken rods and hardware, she is grateful to have restored digestive function and continues to make daily improvements with physical therapy.
She is an advocate for early scoliosis detection and intervention to help others avoid the repercussions of delayed treatment and surgery as an adult.
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