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.

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.

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 tremor, possible CSF leaks, nausea/vomiting, and profound sleep disruption. After years of dismissals and “watch and wait,” a nursing-school sidebar about Depo-Provera and meningiomas led to an MRI—and, eventually, to Dr. Patel. Laura found him the same way many of us found help: searching relentlessly online. Her consult (July 18) validated her full symptom picture; surgery is scheduled for September 8. She shares how ICU overstimulation made life unlivable, how a tight handkerchief briefly eased pressure, why family support matters, and her dream to help build an advocacy network so no one navigates this alone.

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 normalized, appetite returned—and her long-absent menstrual cycle restarted within 48 hours. Today, Kayla’s a mom of two, back behind the wheel and behind the camera, reclaiming the life she thought was gone.

This conversation covers medical gaslighting, advocating for yourself, insurance and out-of-state care, and what recovery really looks like years later..

💡 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.

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-eye vision loss, and more. Canadian imaging later acknowledged a pineal cyst, but help never came. Michelle liquidated her practice, fundraised, and traveled to MUSC to see Dr. Patel. She had occipital craniotomy on Nov 20, 2023; within days the crushing head pressure, eye-movement pain, and other cyst-related symptoms lifted. At 3 months, ~80–90% of those issues remained resolved. Michelle still navigates separate, serious immune/neurologic diagnoses (POTS, MCAS, immunodeficiency, small fiber neuropathy), but says she’d “do the cyst surgery 100 times over.” This is a story of family, faith, community—and what it takes to be heard.

Notable quotes

• “Within two days of surgery—gone. The pressure and eye pain were just…gone.”
• “My kids said, ‘We want to meet the man who saved our mom’s life.’”
• “I’d do the surgery 100 times over.”

💡 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.

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 (first via BICMD telehealth), felt fully validated, and is now scheduled for surgery in January. We talk fear vs. relief, faith, and the power of caregiver support.

Key takeaways

• Symptom cluster matters: photophobia, continuous headaches → migraines, cognitive/speech hiccups, dizziness, severe sleep disruption, anxiety spikes.
• Objective tests can lag the lived reality: early MRI showed a cyst but didn’t change care; later imaging noted aqueduct changes.
• Validation is catalytic: a specialist who knows the pattern can align scattered symptoms and set a plan.
• Access barriers are real: insurance, travel, and misrouting (e.g., oncology) delay care; telehealth consults can bridge gaps.
• Caregivers are lifelines: practical help, belief, and advocacy keep the process moving.
• Mixed emotions are normal pre-op: fear of brain surgery + relief that a path forward exists.

Notable quotes

• “It was like talking to myself—he finished my symptom list before I did.”
• “I don’t even know what normal feels like. I just want to find out.”

Mentioned

• BICMD (third-party telemedicine) for initial consult with Dr. Patel
• Facebook pineal cyst community (peer support & shared experience)

💡 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.

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, advocating with tumor boards, and why redefining “necessary” in brain surgery matters.

💡 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 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. Through resilience and persistence, Julia shares how she advocates for herself, builds community, and continues to search for solutions.

This conversation is a reminder that no one is alone in this journey—and that every voice adds to the growing awareness around pineal cysts.

This episode also includes a very special guest!

💡 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.