Living with Superficial Siderosis: Steve Grinstead’s Story
For Steve Grinstead, life took a sharp, unexpected turn in 2016. What started as an elusive health issue became a harrowing medical journey, one that would test his resilience, redefine his perspective, and challenge his body in ways he never imagined.
The Diagnosis
In 2016, Steve was diagnosed with superficial siderosis (SS), a rare neurological condition caused by chronic bleeding into the central nervous system. Iron deposits formed as the blood broke down, embedding the iron in his cerebellum and other parts of his nervous system. This caused irreversible damage over time. The symptoms were relentless—balance issues, hearing loss, and double vision were just the beginning.
By 2017, the Mayo Clinic in Minnesota became a beacon of hope. After careful analysis, doctors identified the source of the bleeding: a tiny, elusive 5/16-inch hole in the dura (the protective membrane around the spinal cord). Fixing it required intricate and grueling operation.
The Surgery
Steve lay on the operating table for eight hours as a team of surgeons worked on his spine. They cut into five of his vertebrae, removing portions of bone that would never be replaced. A 10-inch incision traced down his back as the surgeons meticulously searched for the source of the bleed. It wasn’t a straightforward discovery—they had to dig deep, carefully navigating delicate structures. Finally, they found the leak, the hole was sewn shut.
The surgery was a success in one sense: the bleeding stopped however this was not a cure. Years of iron deposits (from blood leaking into his central nervous system - within his cerebellum), was to cause excessive neurological damage. The iron remained, causing Superficial Siderosis.
More Battles
As if living with SS was not enough, Steve was dealt another blow. Around the same time as his SS was discovered, he developed heart disease and cancer. These two battles demanded their own interventions - extensive operations and grueling treatments. Amazingly, he overcame them, bringing both conditions under control; however SS remained an ever-present drain, an ongoing reminder of the fight he could not yet win.
Recovery and Challenges
After months of recovery from his spine surgery, Steve felt ready to reclaim his life. One day he climbed back onto his tractor, determined to resume the work that once brought him joy and purpose, this was a mistake. His body was not yet prepared for the strain.
What had once been routine now left him struggling. To his dismay, new challenges emerged. He began experiencing double vision, a cruel twist that SS added to his growing list of symptoms. Fortunately, prisms in glasses corrected his vision enough to allow him to drive, granting him a precious slice of independence.
“SS is bad, but it ain’t all bad,” Steve says with a wry smile.
A Changed Life
Life now moves at a different pace for Steve. He spends much of his time in a wheelchair, a stark contrast to the active life he once led. He’s had to let go of things he once took for granted—mobility, strength, and the freedom to do whatever he pleased. Yet, in the face of loss, Steve has chosen not to succumb to this disease.
His optimism remains unshaken. “Although I was really something,” he reflects, “even though now a wheelchair user with loss of my previous abilities, life is still good, life is still worth living.”
A Positive Outlook
Superficial siderosis has not beaten Steve. Though the condition remains almost incurable (only one known case cured) and harsh, he finds joy in small victories—like being able to drive again (with the use of glasses) he treasures the simple pleasures life still offers. His story is a testament to the resilience of the human spirit, proving that even in the face of immense challenges, a positive attitude can illuminate the darkest paths.
Steve’s journey was also in the April/May issue of Brain and Life magazine, and Mayo Clinic connect inspiring others. His unyielding determination reminds us all to find strength in adversity in the challenges life brings and encourages us to appreciate the moments that make life worth living.
An interview with Debbie Ebiniyi