When I started feeling electric shocks to the base of my spine five years ago, I immediately wondered whether the remnant of my childhood spinal tumor had regrown. Over the next two years, I went to countless specialists looking for answers as to the increasing number of neurological deficits I was developing. What I was told ranged from “It’s nothing” to “It’s scar tissue from the original neurosurgery” to “Maybe it’s psychosomatic due to increased stress.”
I tried countless pain meds, medical procedures, and anti-inflammation diets; I tried acupuncture, physical therapy, and topical creams. Very little made a dent in the pain and corresponding symptoms. After trying a spinal cord stimulator to no relief, I made the heartbreaking decision to retire based upon disability.
I stopped practicing law at thirty-three years old and went to stay with my parents while my husband attended training for a new job. We needed to leave southwest Texas and move somewhere closer to quality doctors and medical facilities.
While staying with my parents, my new primary care physician sent me for yet another MRI, except this time, the radiologist suggested exactly what I thought might be happening – maybe my spinal cord had re-tethered. For the first time in over two years, I was sent to have a 3D MRI, which provided 3D images of the tumor. It had indeed regrown, and was now stuck to my lumbar spine like glue.
Unfortunately, the pain and neurological deficits are here to stay, even though the neurosurgeon took seven hours to carefully remove as much of the tumor as she could. Two years of it pulling on my spinal cord had done irreparable damage.
I’m grateful to that primary care and neurosurgeon for believing something else was amiss and taking the necessary steps to diagnose my condition, but it shouldn’t have taken countless specialists for that to have happened. It was pure luck that I happened to have moved from the Mexican border back to Rhode Island and been sent to see an expert in tethered cord syndrome. Who knows what my health would look like right now if I hadn’t. Then again, who knows what it could’ve looked like if I’d been diagnosed two years earlier.
What I know for certain is I will never stop fighting for quality healthcare, both for myself and for all those who are dismissed or neglected by healthcare professionals.
Special Note: Katy is the author of Relentless: From National Champion to Physically Disabled Activist, out now in paperback and e-book/Kindle formats!