Rare Disease Report

Advocacy Spotlight: Tarlov Cyst Disease Foundation

MAY 10, 2016
Ruth J Hickman, MD
The Tarlov Cyst Disease Foundation is the only foundation in the world solely dedicated to the cause of Tarlov cysts. Through promoting research, supporting families, and providing education, the foundation looks toward a future in which the disease is easily diagnosed and treated.

About Tarlov cysts

Tarlov cysts, also called perineural cysts, are dilations of the nerve root sheaths where the spinal nerves exit the spinal cord. The cysts, which contain cerebrospinal fluid, are found mostly in the base of the spine (the sacral region), though they are less commonly found in other spinal locations. They were named for Dr Isadore Tarlov, who first described the cysts in 1938. Individuals with Tarlov cyst disease may have multiple cysts of varying sizes.
Many Tarlov cysts do not cause any symptoms. However, symptoms can begin as the cysts enlarge and compress nearby structures, or after trauma to the area. Specific symptoms depend on location and size, but can include intense pain (often in the lower back), weakness or cramping of the legs and feet, paresthesias, and bowel, bladder, and sexual symptoms. The cause of Tarlov cysts is not understood, though conditions that increase pressure in the cerebrospinal fluid may increase risk.
Currently diagnosis and treatment for Tarlov cyst disease is a challenge. Because few doctors are knowledgeable about the disease and rarely obtain medical imaging of the sacral spine, patients are often not correctly diagnosed for many years. Though treatments for the condition are available, such as surgery, the outcome is highly variable among patients.

About the Tarlov Cyst Disease Foundation

Reta Hiers, RN, is the co-founder, President, and Executive Director of the Tarlov Cyst Disease Foundation . After being diagnosed with Tarlov cysts, Ms. Heirs began networking with others that had been diagnosed. The group could find very little research on Tarlov cyst disease, and they learned that very few physicians are experienced with it. Currently only 3 out of about 5,000 neurosurgeons in the US are treating the Tarlov cyst disease.
In 2006, the group decided to form the Tarlov Cyst Foundation out of Knoxville, TN. In an interview with Rare Disease Report, Ms. Heirs explains, “we wanted to be patients’ advocates to help patients understand their diagnosis and help their physicians understand their diagnosis.” The group decided that the foundation’s main goals would be patient advocacy, improving worldwide education about the condition, and promoting and funding research.
As part of its research efforts, the foundation encourages all patients with Tarlov cyst to participate in surveys to be compiled into a scientific database. This will help researchers identify prevalence, etiology, symptoms, and treatment outcomes. The foundation also directly funds research on disease and works closely with research institutes studying Tarlov cysts.
On its website, the Tarlov Cyst Disease Foundation provides extensive, detailed information about the condition, including information about local health resources, contact information for doctors with expertise, and the latest research advances. The foundation also provides a variety of educational resources to patients, family members, and the medical community. The foundation sponsors Tarlov Cyst Disease Foundation National Conferences for foundation members and their families as well.
The members of the Tarlov Cyst Disease Foundation hope that in the future, patients will no longer be referred from general physicians to neurologists, urologists, gynecologists, or other specialists before receiving a diagnosis. By increasing research and awareness, the foundation is working to improve the lives of those struggling with the condition.

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