Heidy Kellison is no stranger to struggle. She’s lived with muscular dystrophy, suffered a concussion and found fibroids in her uterus. But none of it compared to the intolerable pain that she had with Tarlov cyst disease.
Tarlov cysts (also known as meningeal or perineurial cysts) occur on weakened areas of spinal nerve roots. These cysts balloon out to form sac-like structures along the wall of the nerve. The pressure of a growing cyst on the spinal nerves can cause pain and a number of debilitating symptoms. Though Tarlov cysts most often occur in the sacral area – the group of bones above the tailbone — they can occur anywhere on the spine.
In late 2018, Heidy began to experience severe back pain. As a competitive ballroom dancer, she thought her pain might be from a previously herniated disc. But from August to December, her health took a swift decline.
“One day, I tried to stand up and I couldn’t move,” Kellison explained. “I knew something was wrong.”
Heidy was soon after diagnosed with Tarlov cyst disease. But due to Tarlov cysts rarely causing pain, her care team couldn’t be sure the cysts were the source.
Heidy’s pain was so bad she had many emergency room visits. She can vividly remember one particular visit lying on a gurney counting tiles on the ceiling trying to get through the pain.
“My husband took my photo that day, so we would never forget just how awful the experience was,” she said. “The hardest thing is that you start to lose hope the pain will end. And I did lose hope. That’s when I began to think about how I could end my life if relief didn’t come.”
However, the worst of her symptoms was her intolerance for food.
“Food was like poison,” she said. “It was very hard to eat, and I lost 30 lb. in a few short months.” Heidy was already a trim 120 lb. to begin with.
At one point, Heidy’s doctor at Stanford Health Care discovered fibroids outside her uterus and believed they could be the cause of her pain. The decision was made for her to undergo a hysterectomy. But deep down, Heidy doubted this was the cause, so she began to research on her own.
“I found information on Dr. Schrot in an online patient forum and couldn’t believe he was in my backyard,” she said. After her hysterectomy, Rudolph Schrot, M.D., fit her in on a cancellation for her first appointment. And then on December 28, surgery was performed on her Tarlov cyst.
As soon as Heidy woke up, she knew the surgery had worked for one reason — she was hungry and wanted food. And while her recovery was not an easy one, she took weekly measurements to make sure she was putting on weight and making steady progress.
“I’m getting back on the dance floor this week,” said Heidy through tears. “To go from being bedridden to doing the cha-cha-cha is just incredible. Dr. Schrot’s devotion to such an unknown subspecialty is truly remarkable — he saved my life.”
Located in Sacramento, the Sutter Medical Foundation Tarlov Cyst Program is one of only three in the country. This program helps alleviate potentially debilitating symptoms from these rare cysts.