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Beyond Incidental:
The Human Behind the Scan
On paper, a radiology report reduces complex, life-changing meningeal cyst disorders to a few lines of cold text. Too often, significant damage gets brushed off as "incidental," "asymptomatic," or "common."
We started this series to change that. Each week, we highlight a patient or caregiver from our community to show what those scans actually mean in real life. Behind every image is a real person fighting for answers - and by sharing these stories, we're helping each other move past medical gaslighting, self-doubt, and isolation into real validation and collective strength.
↓ See below for this week’s feature, or scroll down to explore the full story hub.
THis weeks Feature
Amy's Journey
"In 2022, constant sacral pain, pelvic numbness, leg spasms, and urinary symptoms completely altered my life. I tried physical therapy, medications, and epidural injections—only for every treatment to make my pain worse.
When an MRI finally revealed multiple Tarlov cysts in my sacral region, I discovered something shocking: those same cysts were visible on my earlier scans, but doctors and radiologists had left them completely unnoted.
As a new grandparent who was once deeply active, this disease has stolen precious, irreplaceable moments with my family. But that pain has fueled a deep purpose. That’s why we co-founded The Tarlov Initiative—to ensure patients find answers sooner and never have to spend years fighting just to be heard."
Story Hub
Voices bursting the barrier and raising awareness across the globe.
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