Imagine if the simple act of standing up caused pain and neurological symptoms so severe that you had to immediately lie back down. For people living with a spinal cerebrospinal fluid (CSF) leak, this isn't a hypothetical—it is their daily reality.  Some can only stand for seconds to minutes, others for hours to perhaps a full day, but eventually that clock runs out, and lying flat is the only way to relieve the symptoms.  Many are forced to re-arrange their entire lives, planning ample "flat time" in order to regain some form of normalcy. 

If you are walking around with migraines, brain fog, and other symptoms that progressively get worse as the day goes on, and your symptoms are only relieved by lying flat (such as the 48 hour flat test), chances are you have a CSF leak.  

The brain and spinal cord are enclosed in a tough membrane called the dura mater and cushioned by cerebrospinal fluid. When the dura is compromised by an iatrogenic puncture or tear, the fluid leaks out. The result is spontaneous intracranial hypotension—a dangerous drop in fluid volume and pressure that literally causes the brain to lose its buoyancy and sag inside the skull. This triggers debilitating orthostatic (positional) headaches, severe neurological symptoms, and often leaves patients completely bedridden.

This is a condition that disproportionately impacts women. Despite how devastating it is, it remains heavily underdiagnosed, marginalized, and misunderstood across the medical community.  Iatrogenically, practitioners are causing at least 400,000 new chronic post-dural puncture headaches (PDPH) or iatrogenic leaks per year. 

Massive research and future innovations are desperately needed.

The current treatments are outdated, ranging from epidural blood patches introduced in the 1960s to complex spinal surgeries.  These are not universally effective and often require a grueling, painful trial-and-error process. We urgently need funding to pioneer high-resolution diagnostic imaging, develop more advanced surgical sealants, and launch international patient registries to finally understand and solve this invisible disability. 

That is why I am participating in the Spinal CSF Leak Foundation’s 2026 DuraDash from May 24th to June 7th.

Please consider donating to the Foundation.

Every single dollar goes directly toward the research and clinical innovation required to give these patients their lives back. Because your dura maters.

Thank you for your support and generosity.