People affected by spinal CSF leak share what they most want doctors to know in this presentation from the Bridging the Gap Conference on November 11, 2023.
Patient Voices: What Doctors Should Know
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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.
Patient Voices: Thoughts on Recovery
People with spinal CSF leak share their thoughts on recovery after spinal CSF leak treatment at the Bridging the Gap Conference on November 11, 2023.
Patient Talk: On Living with a Persistent Leak
A talk by Jodi Ettenberg at the Bridging the Gap Conference on November 11, 2023.
Patient Talk: Recovery is a Verb
A talk by Jen MacKenzie at the Bridging the Gap Conference on November 11, 2023.
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.
Patient Talk: The Surgical Experience
A talk by Dr. Claudia Perez Sandhu at the Bridging the Gap Conference on November 11, 2023.
Patient Voices: Epidural Blood Patching
People with spinal CSF leak reflect on their experiences with epidural blood patching at the Bridging the Gap Conference on November 11, 2023.
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.
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.
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.
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.
The Sky’s the Limit: Advice from Zack and Anthony
Friends Anthony and Zack share their advice for people experiencing spinal CSF leak and those who care about them.