Stolen Moments:
Turning Pain Into Purpose 

In 2022, following a COVID and C. diff infection, I began experiencing sacral and tailbone pain that gradually escalated from occasional flares to constant, debilitating daily pain. Over time, that pain expanded into severe sacral, tailbone, pelvic, glute, and groin pain, accompanied by urinary symptoms, leg muscle spasms, numbness, and more. Because of my medical history, I even investigated whether my endometriosis from years ago had returned.

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Early on, I followed the standard path. I saw orthopedics, completed physical therapy, tried various medications, and underwent three different types of epidural injections. Instead of offering relief, every attempt only worsened my symptoms. It was not until a later MRI that the answer finally surfaced, stating there were multiple Tarlov cysts in the sacral region, with nothing else showing on the scan to explain my pain. To my shock, I discovered those same cysts had been visible on earlier imaging but were left completely unnoted in the radiology reports.

After seeking out a specialist, navigating consultations, and undergoing a diagnostic nerve root block, I finally had clarity and am currently in the process of scheduling surgery.

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Reaching this point highlighted a devastating reality. A condition like this pulls the rug out from under your entire life, and its weight falls on everyone around you. It affects far more than just the person holding the diagnosis. With so few medical options available and the overwhelming costs involved, viable help remains completely out of reach for many patients and their families.

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This disease has taken so much time away from my life, drastically limiting what my days can look like. As someone who has always been very active and deeply dedicated to taking care of myself, this has taken a profound toll. Most painfully, as a new grandparent, it has stolen precious, irreplaceable moments with my family.

Yet that pain has also fueled a deep purpose. Through The Tarlov Initiative, we are working to ensure patients find answers sooner, receive proper medical care, and realize they are never alone in this fight. No one should have to spend years searching for answers while watching their life fall apart. Awareness saves time, reduces suffering, and restores hope.

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That's why we're launching the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.