Judy Sayre - Alabama, US

For a long time, the pain was an invisible, nameless presence that redefined my daily life. Sitting at a desk, standing in line, or simply taking a walk became agonizing hurdles. It felt like an endless battle against an adversary no one else could see, leaving me searching for answers to a relentless right-sided nerve pain that deep down, I knew wasn't just in my head.

The breakthrough finally came on paper, but the reality was written in my spine.

My MRI scan revealed not just one, but five Tarlov cysts clustered along my S1 to S3 nerve roots. These aren't just empty spaces; they are fluid-filled sacs pressing directly against the delicate nerve pathways at the base of my spine. The largest among them has grown to 2.3cm on the right side—large enough that my specialist reported it is actively compressing the nerve root and causing bone erosion.

Seeing that scan was both a relief and a sobering revelation. It gave a clear name to the constant pressure and structural toll my body has been quietly enduring.

Because Tarlov cysts are rare and frequently misunderstood, many people spend years dismissed or misdiagnosed. I am putting a face to this disease and sharing my personal diagnosis to shed light on this lesser-known spinal condition.

Awareness means quicker paths to specialists, better access to targeted treatments, and validation for thousands of people living with chronic spinal nerve pain. Our pain is real, our diagnoses are clear, and visibility is the first step.

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That's why i'm joining the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.