Nicki - US

I’ve been in pain for most of my life. My back and pelvic pain started when I was a teenager, but every time I complained, I heard the same thing: I was “too young” to have back problems. Instead, my pain was blamed on gynecological issues and lifelong constipation. I underwent treatments, procedures, and eventually a hysterectomy—believing it would make the pain stop. It didn't. When removing my uterus didn't solve the problem, I was offered antidepressants and essentially written off.

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It wasn’t until 2015, when my back became so bad that I could no longer walk, sit, or lie down, that imaging revealed nine Tarlov cysts scattered along my spine, some already considered “giant.” When I asked my doctor about them, his response was immediate: They were nothing to worry about. Tarlov cysts don’t cause symptoms. So I adapted. I underwent a lumbar laminectomy, discectomy, and later an L5-S1 fusion in 2025. I got remarkably good at living with chronic, unexplained pain while raising three young children, all while feeling embarrassed, lonely, and questioning if I was just dramatic.

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The turning point wasn't my back pain—it was my severe constipation. After being hospitalized in 2025 for going six weeks without a bowel movement, doctors began discussing removing my colon. I drew the line. Having already lost my uterus without resolving my pain, I refused to lose another organ without exploring every explanation. I began researching and remembered those nine cysts from a decade prior.

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I asked my gastroenterologist: "If I had cysts the size of three plums on my sacrum eroding the bone, do you think that could be causing my problems?" He looked shocked and said, "OF COURSE!" For the first time in decades, a physician validated that what I had been describing actually mattered.

I consulted Dr. Frank Feigenbaum in Dallas. Imaging revealed the cysts had completely thinned and eroded parts of my sacrum. On September 23, 2026, I underwent surgery. Dr. Feigenbaum found four cysts requiring treatment, severe nerve deterioration, and an ectatic spinal cord.

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Today, I am navigating a long recovery involving saddle numbness and nerve healing. I still don't know what my final normal will look like, but I am grateful to finally have answers. A Tarlov cyst shouldn’t automatically be dismissed simply because it’s labeled 'incidental.' I can’t get back the decades I spent in pain, but maybe telling my story will help someone else avoid losing theirs.

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