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.

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.

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, litigation fears, and the need for careful consent with a skilled pineal-region surgeon. The conversation acknowledges alternate hypotheses (including hormonal theories), highlights progress since the Human Connectome Project, and shares practical guidance for patients seeking help.If you’ve been told “it’s all in your head,” this one is for you.

💡 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 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 processing challenges), several providers dismissed a cyst-symptom connection. Michael and Kelly reflect on their own experience, discuss hope, advocacy, and options, and encourage next steps with specialists who take symptomatic pineal cysts seriously.

Content note: pediatric medical distress, dismissal by providers.

If this episode resonates, share it with another family, leave a review, and visit pinealstories.com to submit your storyand find resources. Your voice helps shift the medical conversation.

💡 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.

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 discovered an “incidental” pineal cyst. What followed was medical gaslighting, a devastating decline, suspected mini-strokes, and a fight to be believed. A second-opinion path led her to a neurosurgical consult and, ultimately, surgery on August 15 (last year). Today, Chelsea is one year post-op—and her symptoms are gone. She shares what changed immediately after surgery (hearing, light sensitivity, memory), the toll on her family, and the hope she wants others to find sooner.

Content Note

This episode includes discussion of severe illness, medical gaslighting, and suicidal thoughts. If you or someone you know is in crisis, please seek help immediately (e.g., call/text 988 in the U.S.).

Key Moments / Chapters

• Host intro & disclaimer
• Early 20s: migraines, light sensitivity; first pregnancy (2016) and a sudden collapse
• “Incidental finding”: Chelsea reads her own MRI report in MyChart (pineal cyst noted)
• Gaslighting & misdiagnoses: anxiety/depression labels, “slow-growing cyst,” “COVID,” even accusations of fabricated records
• Cleveland Clinic second opinion: cyst vs. pineocytoma; ongoing decline and suspected mini-strokes
• Community matters: finding the pineal cyst support group and real validation
• Referral, workup & candid talk: “You don’t do brain surgery for headaches”—why this was far more
• Surgery day (Aug 15): what changed right away (hearing clarity, light tolerance)
• One-year post-op: symptoms gone; memory returning; cycles normalizing
• Family perspective: caregiver strain, guilt, and rebuilding after survival
• Creativity during illness vs. after recovery—how the brain “felt different”
• Closing reflections: awareness, advocacy, and what Chelsea wants others to know

Takeaways

• “Incidental” doesn’t mean irrelevant—symptoms matter.
• If you’re not being heard, a second opinion (and your records) can be life-changing.
• Chronic stress from undiagnosed illness can impair memory and functioning.
• Recovery can take time—but full, durable relief is possible.
• Caregivers need space and support, too.

Notable Quotes

• “It wasn’t just headaches.”
• “I was told it was anxiety, COVID—anything but what it was.”
• “Waking up from surgery, I heard my husband’s voice so clearly.”
• “One year later, my symptoms are gone.”
• “A ‘slow-growing cyst’ was slowly killing me.”

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 condition—panic attacks, vertigo, and daily pain—and the mental strain of living with symptoms that are often dismissed. He also explains how Sweden’s public healthcare system both supports and challenges patients seeking specialized treatment, including his attempts to connect with neurosurgeons across Europe.

Despite the struggles, Michael speaks about resilience, the importance of family, and the support he’s found through patient communities. His story highlights both the personal toll of symptomatic pineal cysts and the hope that comes from connection and persistence.

Key Topics Discussed

• Michael’s first symptoms and panic attacks while driving and working.
• Challenges in Sweden’s healthcare system, including wait times and access to specialists.
• The emotional and family impact of chronic dizziness and pain.
• Experiences seeking second opinions from neurosurgeons in Sweden, Norway, and Germany.
• The financial and emotional costs of considering surgery abroad.
• Coping strategies, community support, and the shift from “living life” to “surviving life.”

About Michael Blomberg

Michael is an IT professional living in a suburb of Stockholm, Sweden. A father of three and part of a blended family, he balances his professional work with daily challenges caused by a pineal cyst. He has become an advocate within Scandinavian patient groups, working to raise awareness and provide community support for others navigating similar paths.

💡 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.