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.

Father’s Day: Men and Spinal CSF Leak

Father’s Day: Men and Spinal CSF Leak

Happy Father’s Day from the Spinal CSF Leak Foundation! This Migraine and Headache Awareness Month, it’s important to know that spinal CSF leak and other headache diseases can affect anyone—including men.

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Patient Voices: Post-Patch Care and RIH

Patient Voices: Post-Patch Care and RIH

People with spinal CSF leak reflect on their experiences with post-patch care and rebound intracranial hypertension at the Bridging the Gap Conference on November 11, 2023.

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Nick Stevens: A Journey to a Diagnosis

Nick Stevens: A Journey to a Diagnosis

Nick Stevens (he/they) shared their decade-long search for proper diagnosis and treatment for spinal CSF leak at the inaugural Bridging the Gap conference on November 11, 2023.

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Patient Stories: Anna

Patient Stories: Anna

Spinal CSF leak is often confused with other diagnoses. Like so many patients, Anna was told her symptoms were due to sinus infection or migraine. Here is her story.

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Patient Stories: A leak at 71

Patient Stories: A leak at 71

Spinal CSF leak can affect anyone at any age. John was 71 years old when he experienced the first symptoms of a leak. Here is John’s story.

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