What is the prevalence of Tarlov Cyst?

The true prevalence of Tarlov cysts remains unknown, though incidental findings on magnetic resonance imaging (MRI) suggest they are present in approximately 4.6% to 9% of the general population.

Prevalence and Incidence Data

While imaging studies indicate that Tarlov cysts are relatively common as incidental findings, the number of individuals who are symptomatic—those suffering from the pain and neurological deficits characteristic of the condition—is considered rare. Because many cases are asymptomatic, there is no established annual incidence rate for symptomatic Tarlov cysts. Data remains limited because these cysts are often dismissed as benign findings on spinal imaging, leading to significant underdiagnosis.

Demographics and Clinical Presentation

Research suggests that symptomatic Tarlov cysts appear to be more common in females than in males, though the underlying biological reason for this gender distribution is not yet fully understood. While these cysts can be discovered in patients of any age, they are most frequently diagnosed in adults between the ages of 30 and 60. There is currently no definitive evidence of specific geographic or ethnic variations in the prevalence of these cysts.

Challenges in Data Collection

Accurate epidemiological data is difficult to track because there is no standardized registry for Tarlov cysts. Many patients undergo years of misdiagnosis or are told their cysts are "incidental" despite experiencing debilitating symptoms. At DiseaseMaps.org, we have seen 988 people join our community to share their experiences, providing a vital real-world perspective that clinical literature often overlooks. This community data highlights the gap between "incidental" findings in textbooks and the lived reality of patients managing chronic pain from Tarlov cysts. As awareness grows, we hope for better data collection to support those living with this often-overlooked condition.

Medical Disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

References

• NIH Genetic and Rare Diseases Information Center (GARD): Perineural Cysts


• Orphanet: Tarlov Cyst


• National Organization for Rare Disorders (NORD): Tarlov Cysts