Monica lived with symptoms for nearly 30 years before she was finally correctly diagnosed and treated for a spinal CSF leak. Here is Monica’s spinal CSF leak story.
Patient Stories: Reckoning with a life-long mystery
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Updates from the Spinal CSF Leak Foundation
Patient Stories: Reckoning with a spinal CSF leak during lockdown
Lillie’s spinal CSF leak struck at the height of COVID lockdown in the UK, which made it challenging for her to find care.
Raising Awareness via TikTok
Connie shares how she works to raise awareness despite being profoundly affected by spinal CSF leak.
Rare Disease Day 2022
On Rare Disease Day 2022 we discuss what’s rare about SIH.
Headache on the Hill 2022
The Spinal CSF Leak Foundation sent several advocates to HoH 2022, including Michell Cromer, who shared her experience with us.
Symposium 2021 Video: Dr. Ian Carroll
Dr. Ian Carroll presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.
Symposium Video 2021: Dr. Waleed Brinjikji
Dr. Waleed Brinjikji presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.
Symposium Video 2021: Dr. Mark Mamlouk
Dr. Mark Mamlouk presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.
Symposium Video 2021: Dr. Wouter Schievink
Dr. Wouter Schievink presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.
February 2022 newsletter
Welcome to our February 2022 newsletter! To subscribe and have our monthly updates delivered to your inbox, please fill out the form at the bottom of this page. Spinal CSF Leak in the news CNN Travel recently published this piece by Jodi Ettenberg about her experience...
Symposium Video 2021: Dr. Timothy Amrhein
Dr. Timothy Amrhein presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.
Symposium 2021 Video: Dr. Charles Louy and NP Rachelle Tache
Dr. Charles Louy and Rachelle Tache, NP, presented this talk at the Fourth Cedars-Sinai Intracranial Hypotension Symposium on October 2, 2021.