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.