As a nurse for 26 years at Santa Rosa Memorial Hospital, Payton Walton has seen her fair share of illness and disease. But nothing compared to what she would face 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.
For Payton, her Tarlov cysts resulted in intense, radiating hip and low back pain that went down to her feet. And over time, she experienced intolerable rectal and vaginal pain, difficulty walking, vertigo and vision changes. These symptoms came on slowly and worsened with time. She saw her primary care doctor and chiropractor with no improvement or diagnosis. But when she began to have bladder control issues, she knew something was seriously wrong.
At that point, Payton was seen in the emergency room to rule out cauda equina syndrome – symptoms mimic those of Tarlov cysts. Payton’s hospitalist ordered an MRI, and the results revealed two Tarlov cysts on the nerve roots of her sacrum.
“The neurosurgeons said they hadn’t seen cysts so large,” recalled Payton. “The only treatment they offered was to inject the cysts with fibrin glue to block fluid from coming back into the cyst.”
But Payton learned this could be dangerous, possibly make things worse, and wasn’t a permanent solution.
Later on, Payton found Rudolph Schrot, M.D. through the Tarlov Cyst Disease Foundation website. And in two and a half weeks, Payton had an in-person consultation.
After trying anti-inflammatory medication, Payton decided to move forward with a surgical technique that Dr. Schrot recommended. The procedure involved draining the cysts and tying off the tissue so the cysts could not refill. Dr. Schrot conducted her surgery three months later.
“As soon as I woke up I could feel my leg again – they felt so heavy before,” Payton remembered. “After surgery, I needed very little pain medicine and had such an easy recovery.”
All in all, her recovery took three months, and then she was back to work and free from all pain and symptoms.
After such a successful surgical result with Dr. Schrot at Sutter Medical Center, Sacramento, she actively participates in the online Tarlov cyst disease support groups. She helps others with the disease navigate the challenging path toward diagnosis and treatment.
“The world needs more attention around these very rare diseases,” said Payton. “Everyone wants to support the big causes of the world, but we shouldn’t forget to support those we’ve never heard of. Those that suffer from Tarlov cyst disease and other rare conditions are no less worthy of help.”
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.