When it comes to understanding Tarlov Cyst Disease, one of the most confusing—and often overlooked—aspects is how symptoms can vary depending on where the cysts are located. These fluid-filled sacs form on nerve roots along the spine, and their impact depends on which nerves they’re pressing against or damaging.

Living with Tarlov Cyst Disease can feel like you're living within a puzzle full of missing pieces. For many patients, symptoms reach far beyond low back or pelvic pain. Burning limbs, dizziness, brain fog, bowel or bladder dysfunction, and vision changes may seem unrelated—until you look deeper.

n a compelling new publication, Dr. Abdelali Yahia details the case of a 38-year-old woman who endured years of bladder dysfunction, perineal numbness, and sexual impairment.

Spontaneous regression of Tarlov cysts is extremely rare. According to the authors, only one previous case has been documented in medical literature.

Medical professionals must not rule out Tarlov Cysts simply because a patient is young, male, or has “too rare” a condition. The presence of Ehlers-Danlos Syndrome increases the risk of spinal meningeal cysts, but diagnosis requires suspicion, detailed imaging, and a willingness to look beyond the expected.

Jodey’s diagnosis of an inoperable (according to the story) perineural cyst came in 2016—less than a year before her death. It contributed to escalating pain and disability, and yet there’s no indication that her condition was treated as the serious neurological disease that it is.

For the first time in Spain, researchers are conducting a genetic study focused on Tarlov Cyst Disease, a debilitating and often misunderstood neurological condition.