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Lori & Shannon: When a ‘Small’ Cyst on the Brainstem Changes Everything
At age 12, Shannon went from a thriving athlete and musician to an angry, exhausted, and deeply unwell child almost overnight. What doctors brushed off as “attention-seeking,” “depression,” or even “drug-seeking” turned out to be something far more serious — a rare cyst on her brainstem causing immense pressure and life-altering symptoms. In this episode, Lori shares the long, exhausting fight to be believed, the moment a lumbar puncture briefly gave her daughter’s life back, and how a neurosurgeon in Houston finally uncovered the truth: the cyst wasn’t on the pineal gland at all, but attached to the brainstem and pressing on critical structures, including the vagus nerve. 💡 Resources & Links: Visit our website: pinealstories.com Learn more about pineal cyst symptoms and advocacy Share your story or contact us: pineal.stories@gmail.com 🎵 Credits: Music: "What I Waited For" by Kikoru – Licensed via Epidemic Sound 📅 New episodes drop every Tuesday Follow, rate, and review to help us reach more people — because the truth deserves a mic.
In this episode, we sit down with Julesy Roach, a mental health therapist, mom of two, in the Washington, D.C. area. Julesy specializes in supporting people with complex, often dismissed conditions like pineal cysts, Lyme disease, Ehlers-Danlos syndrome, POTS, and MCAS—but that work was born from her own brutal medical journey. She shares how lifelong exhaustion, migraines, and then Lyme disease spiraled into 24/7, unbearable head pressure, vision loss, cognitive decline, and a level of pain that had her Googling physician-assisted suicide. Along the way she was repeatedly told it was “just anxiety” or depression, dismissed by local neurosurgeons, and left to question her own sanity—until she dug through old records, found an “incidental” pineal cyst, and connected with specialists who finally believed her. Julesy walks us through consulting with multiple surgeons, the fight with family fear and medical skepticism, and ultimately choosing high-risk brain surgery. The moment she woke up from anesthesia, the crushing headache that had her bedridden was gone—and five years later, every single symptom has resolved. Now, as both therapist and former patient, she talks about medical trauma, the emotional toll of not being believed, why patient stories are critical for changing physician education, and her message to anyone still in the thick of it: you know your body, don’t give up, and you deserve real help and emotional support. Content Note: This episode includes discussion of suicidal thoughts and medical trauma related to chronic illness and severe pain. 💡 Resources & Links: Visit our website: pinealstories.com Learn more about pineal cyst symptoms and advocacy Share your story or contact us: pineal.stories@gmail.com 🎵 Credits: Music: "What I Waited For" by Kikoru – Licensed via Epidemic Sound 📅 New episodes drop every Tuesday Follow, rate, and review to help us reach more people — because the truth deserves a mic.