Patient Stories

Find out what it’s like to live with spinal CSF leak through the experiences of our patient storytellers. Read their accounts below, or watch them share their stories through video.

Casey’s Spinal CSF Leak Story

Casey’s Spinal CSF Leak Story

Casey, a life-long adrenaline enthusiast, runs marathons and races cars for fun. But at 38, he found himself sidelined with terrible head pain. https://youtu.be/mxqnRtRFTt8 Casey Kempner is a self-described adrenaline enthusiast, a multi-sport athlete throughout high...

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Tough Mothers: Elle Willis

Tough Mothers: Elle Willis

Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura...

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Tough Mothers: Stacy Paulsen

Tough Mothers: Stacy Paulsen

Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura...

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Tough Mothers: Monica Andrade Yen

Tough Mothers: Monica Andrade Yen

Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura...

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Tough Mothers: Michelle Coxhead

Tough Mothers: Michelle Coxhead

Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura...

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Tough Mothers: Becky Bosch

Tough Mothers: Becky Bosch

Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura...

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Alice’s Story

Alice’s Story

Alice’s headache started after a sinus infection—but wouldn’t end until she had surgery to address the CSF-venous fistula causing her spinal CSF leak symptoms. https://youtu.be/jzv7TRXwovE Alice is one of those people for whom the term “go-getter” was invented. At 58,...

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Mason’s spinal CSF leak story

Mason’s spinal CSF leak story

Unlike most patients, who endure months or even years of misdiagnosis and unnecessary medications and testing, Mason benefitted from the quick-thinking actions of his long-time personal physician. https://youtu.be/eVyqlOqNU68 Mason was 53 when his headache started. He...

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Berhanu’s spinal CSF leak story

Berhanu’s spinal CSF leak story

Like so many spinal CSF leak patients, Berhanu’s leak affected not just him but his entire family—and when he suffered a grave complication, it turned out their role in his treatment was critical. https://www.youtube.com/watch?v=zE9tD2p5kXA Berhanu has taken on many...

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Jeff’s spinal CSF leak story

Jeff’s spinal CSF leak story

Jeff suffered from textbook symptoms of intracranial hypotension with zero results on imaging. But after extensive testing, the reason for his symptoms was finally discovered. https://youtu.be/SahyKOsvdKg Jeff was 44 when his headache first began. It came on in...

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Katie’s spinal CSF leak story

Katie’s spinal CSF leak story

Katie’s spontaneous spinal CSF leak seemed to heal on its own, but several years later, a minor car accident resulted in a relapse. She needed surgery to get her life back. https://youtu.be/5OykwXWo3tc There was nothing that precipitated Katie’s headache. No accident,...

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Emily did not have a pituitary tumor

Emily did not have a pituitary tumor

Emily’s brain MRI led her doctors to think she had a pituitary tumor. Instead, what she really had was a spinal CSF leak. https://youtu.be/XKA1OeBnz5A Emily was a couple weeks into a one-month trial of Cross-Fit when the headaches started. Driving home after a...

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