Tarlov Cyst Disease Foundation

Tarlov/perineural cysts form around the spinal nerves, with nerves inside the cyst wall thus the name perineural (meaning “around nerve”) and contain cerebrospinal fluid (CSF) inside the cysts. The cysts occur most prevalently in the sacral spine (below the lumbar spine) 95% of cases, but can and do occur in the cervical spine (3%), thoracic and lumbar spine (6%).  The medical community is never looking for the presence of perineural cysts, because they have not learned about them either in medical school or in their clinical practice, and if they have heard the name, they believe they are never symptomatic.  In almost 100% of cases, the physician orders a lumbar MRI looking for disc issues, and the sacral spine is never imaged. Since the cysts are most prevalent in the S2-S3 nerves, they are missed for many years. In many instances, radiologists fail to report the cysts, even if they are imaged. The prevalent symptoms are: nerve pain in lower spine, buttocks, hips, pelvis, genitalia, and rectum, difficulty sitting, bowel & bladder and sexual dysfunction issues, in addition to headaches, and sensory issues. Due to the widespread multi systems symptoms, patients are referred for years to many other specialists, such as urologists, gastroenterologists, gynecologists, etc. and even if the cysts are imaged, they are being dismissed and ignored, while the patients nerve pain is progressing.

To help raise awareness of this condition, Reta Hiers, RNC founded the Tarlov Cyst Disease Foundation. Their objectives include:

• Promoting and funding research for Tarlov Cyst Disease
• Collaboratiing with and educating those in the medical field and the general public about Tarlov Cyst Disease, both nationally and internationally
• Providing resources to Tarlov cyst patients, their families and friends, physicians, and the public
• Conducting surveys with both Tarlov cyst physicians and patients to identify prevalence, determine etiology, and clarify symptomatology, as well as share and analyze outcomes of surgery and other treatments of Tarlov cysts
• Publishing research results including trends in diagnosis, prognosis, treatments, outcomes and other relevant medical information
• Encouraging support and  fundraising to promote and accomplish these specific objectives and purposes of the Foundation.

In this exclusive interview with Rare Disease Report, the President and Executive Director of the foundation -- Reta Hiers - discusses the disease and some of the goals of the foundation.
For more information, visit  www.tarlovcystfoundation.org