Pineal Stories

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...

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...

Content note: Pineal Stories shares patient experiences for information and education only. Nothing here is medical advice. Always consult a qualified clinician for your own care. Guest: Laura — retired U.S. Border Patrol agent, newly minted BSN nurse, and pineal-cyst surgery patient. Summary: Laura has lived with symptoms since age 17—fainting spells, severe migraines, visual changes, a left-hand...

Sorry, y'all! I had heart surgery and it threw off the schedule. We are getting back on track for November 11th!

At 18, Kayla got lost in a familiar city. By 24, she was having up to seven grand mal seizures a day, losing vision and hearing without warning, and being told it was stress or “in her head.” After years of misdiagnosis, she found a surgeon in Texas who removed a trilobal 15mm pineal cyst that had ruptured her pineal gland. The results were immediate: seizures stopped, vision and hearing normalize...

Michelle Wharton, a dental hygienist and clinic owner from northern British Columbia, went from backcountry-athlete and busy mom to bedridden within months after a sudden neurological decline in late 2021. Across years of mislabels (vestibular migraine), missed findings, and “it’s incidental” shrugs, her symptoms escalated—blinding cranial pain and pressure, cognitive lapses, intermittent right-ey...

Justine (32, Poconos PA) traces a decade of symptoms—photophobia while driving, daily headaches → migraines, nausea, cognitive “hiccups,” sleep disturbance, anxiety—and the long road of dismissals, mislabels, and insurance hurdles. After an MRI showed a pineal cyst years ago, multiple specialists said “it’s nothing.” A recent MRI noted aqueduct narrowing; she finally connected with Dr. Patel (firs...

This two-part episode follows Emily through brain surgery for a symptomatic pineal cyst—first, immediate post-op reflections (days 1–4), then a rapid-fire follow-up just 20 days later. Emily and her mom share candid details about pain spikes, the “zipperhead club,” unexpected improvements (sensory issues, mood, empathy), and what “finding my new normal” looks like. We talk recovery curves, advocat...

In this episode of Pineal Stories , we sit down with Julia to hear her journey with a symptomatic pineal cyst. Julia opens up about her experiences navigating symptoms, seeking answers, and the challenges of finding support and understanding in the medical community. Her story highlights not only the physical impact of living with a pineal cyst, but also the emotional and mental toll it can take....

Neurosurgeon Dr. Teo joins Michael and Kelly to challenge the “pineal cysts are always asymptomatic” dogma. He recounts the serendipity that led him to operate, why some patients improve after surgery, and how mechanical explanations (aqueduct and venous compression) can account for headaches, neuro/visual issues—and even severe psychiatric symptoms. Dr. Teo also discusses peer pushback, litigatio...

In this deeply moving conversation, Glenda shares her 11-year-old son’s journey with two brain cysts —a pineal gland cyst (~1.3 cm) and a cavum septum pellucidum (CSP) cyst (~6.2 cm) —and the uphill battle to be heard. Despite multiple MRIs and escalating neurological symptoms (vision loss/“upside-down” vision, severe headaches, anisocoria, behavioral episodes, leg tremors, learning and auditory p...

Chelsea’s symptoms began in her early 20s—debilitating headaches, blinding light sensitivity, nausea, dizziness, fainting, and profound insomnia. Years later, during pregnancy, everything escalated. Despite repeated ER trips and specialist visits, she was told it was “just hormones,” “just blood pressure,” “post-COVID,” or even “all in your head.” After pulling her own MRI from MyChart, she discov...

In this episode of Pineal Stories , we welcome Michael Blomberg , our first guest from Europe. Michael, a 52-year-old father and IT professional from Sweden, shares his journey from the first signs of unexplained dizziness to navigating the country’s healthcare system and searching for answers about his symptomatic pineal cyst. Michael candidly describes the life changes brought on by his conditio...

In this eye-opening episode of Pineal Stories , we hear from Paxton, a 14-year-old whose life has been shaped by watching his mother navigate the challenges of living with a symptomatic pineal cyst. With a rare combination of honesty and empathy, Paxton speaks candidly about the emotional weight, day-to-day adjustments, and misunderstood realities faced by families supporting someone with a chroni...

🎙️ Episode 7: “Emily E" Welcome to Pineal Stories , the podcast that gives voice to those living with symptomatic pineal cysts — a condition often dismissed, misunderstood, and under-researched. In this powerful episode: Emily shares her story of struggling to understand what was happening, quick action and an incredible timeline! 🧠 You will hear many more stories like this in this series. These...

In this heartfelt and powerful episode of Pineal Stories , we meet Nicole, a 35-year-old from Waiehu, Maui, whose life has been profoundly impacted by a pineal mass. Pre-surgical but optimistic, Nicole shares her 15-year journey from her first debilitating symptoms in 2009—migraines, vertigo, visual disturbances, and fatigue—to the challenges of being dismissed, misdiagnosed, and passed between sp...

In this groundbreaking episode of Pineal Stories , we sit down with two of the most pivotal figures in the movement toward recognizing symptomatic pineal cysts: Dr. Sunil Patel, Chair of Neurosurgery at the Medical University of South Carolina, and his longtime PA, Jared Nix. Together, they’ve evaluated and operated on hundreds of patients whose lives were deeply affected by pineal cysts—many dism...

The Day Before – Emily K’s Story Emily K is just 19 years old, and tomorrow she will undergo surgery to remove her pineal gland. In this emotional pre-op interview, Emily opens up about her experience living with a symptomatic pineal cyst, her long journey to find answers, and what it feels like to face a surgery few doctors acknowledge — but that could finally give her relief. This is a rare and...

🎙️ Episode 3: “Dina" Welcome to Pineal Stories , the podcast that gives voice to those living with symptomatic pineal cysts — a condition often dismissed, misunderstood, and under-researched. In this powerful episode, Dina shares her story of struggling to be heard, impact on her family and eventual resolution with even just a touch of mic-dropping victory in the office of a neurosurgeon who had o...

🎙️ Episode 1: “Kelly A Part 2" Welcome to part 2 of the premiere of Pineal Stories , the podcast that gives voice to those living with symptomatic pineal cysts — a condition often dismissed, misunderstood, and under-researched. In this episode, we continue to share our story wherein were told these symptoms were “unrelated” or “irrelevant,” while we knew better from our own experience. From chroni...

🎙️ Episode 1: “Kelly A Part 1" Welcome to the premiere episode of Pineal Stories , the podcast that gives voice to those living with symptomatic pineal cysts — a condition often dismissed, misunderstood, and under-researched. In this powerful first episode, we share our story wherein were told these symptoms were “unrelated” or “irrelevant,” while we knew better from our own experience. From chron...

Pineal Stories is a podcast that gives voice to people suffering from symptomatic pineal cysts — a condition often dismissed by the medical community. Through personal stories, expert interviews, and advocacy, the show shines a light on the real impact of this misunderstood condition and the fight for recognition, treatment, and hope. 🎵 Music: "What I Waited For" by Kikoru – Licensed via Epidemic...