Understanding Tarlov Cyst Disease Starts Here
Explore evidence-based information, practical resources, and a supportive community that will help you navigate your health journey.
Too many people living with Tarlov Cyst Disease face uncertainty after diagnosis. The Tarlov Cyst Society provides trusted information, patient support, and connections to research and clinical communities to help people better understand their condition and advocate for informed care.
How We Help
Patient Support
Find reliable information, practical resources, and guidance to help you understand Tarlov Cyst Disease and advocate for your health.
Clinician Resources
Access current research and clinical studies designed to support healthcare professionals evaluating and caring for people with Tarlov Cyst Disease.
Research & Awareness
Explore first-hand patient stories, educational content, and current research to better understand Tarlov Cyst Disease and stay informed.
Part of the Rare Disease Community
The Tarlov Cyst Society is listed in the National Organization for Rare Disorders (NORD) Patient Organization Directory.
Latest Stories & News Updates
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Becky Chandler-Berry’s Story
My Tarlov Cyst Journey Becky Chandler-Berry, MD My tailbone pain began in 2019 and left me barely able to sit on the medical stool in my o9ice while I saw patients. The ache gradually grew bad enough that I had to carry a Cushy Tushy or donut cushion everywhere. At first, I blamed the ache…
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Zdenko’s Story
I believe I have symptomatic Tarlov cysts, because I have fluctuating sacral and perineal dull pain, worsening with longer walking, standing, banding and sometime burning sensation on the back of my legs and on my soles. I also have a history of acute low back pain too, which may be connected with (or completely caused…
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Behind The Tarlov Cyst Society: The Story Behind the Organization
When people visit the Tarlov Cyst Society website, they often see educational articles, research updates, physician information, patient resources, and advocacy campaigns. What they don’t always see is the person working behind the scenes to help make it all happen—or the questions that guide every decision we make. As the Tarlov Cyst Society Founder, I…
