Registration will open soon! We’ll be sharing more news shortly, including ways that patients can get involved.

Spinal CSF Leak: Bridging the Gap is held in partnership with @andrewcallenmd.bsky.social & the University of Colorado Anschutz. We hope you join us online on November 15th!

Spinal CSF leak is often misunderstood & overlooked. Our annual conference Bridging the Gap aims to spotlight patient experiences & share physician expertise.

Join us for this year’s fully virtual event on Nov 15th. Free for patients! The theme this year is: “Making the Invisible Visible".

The last day of #leakweek is about hope. While there are patients who have not found a lasting repair for their spinal CSF leak, many patients do get sealed — and the field is ever-evolving. Year-over-year research is growing and advocacy is increasing. We are hopeful for the future.

For day 6 of #leakweek, we talked about post-treatment care, and how a percentage of people have rebound intracranial hypertension following a successful repair of their spinal CSF leak:

Day 5 of #leakweek is about treatment, and how there are different treatments depending on leak type and location. One size does not fit all!

For day 4 of Spinal CSF Leak Awareness Week, called #leakweek, we are talking about causes. It is a myth that the condition can 'only' be caused by trauma to the spine or a puncture or surgery. Spinal CSF leak can also occur spontaneously, a growing area of research during the prior decade:

Day 3 of leakweek is all about symptoms of #spinalcsfleak, which go far beyond a headache or positional head pain and are often system and debilitating. Here are our myths and facts for this aspect of the condition:

Day 2 of #leakweek: spinal CSF leak does not get better on its own in the majority of cases, and medical intervention (be it epidural blood patching, surgery, or embolization) is needed. Early diagnosis and swift treatment are crucial to successful outcomes — though unfortunately not yet the norm.

For the next week, we’ll be sharing myths and facts about spinal CSF leak that feature the latest research papers, created in collaboration with @spinalcsfleakca.bsky.social & @csfleak.bsky.social. For day 1, the myths and facts are below!

Our annual fundraising drive, duradash®, is happening now! We are a small patient-led nonprofit with a big mission, & donations are needed to sustain our advocacy. Please consider a tax-deductible donation in support of mission, or help share our campaign page to spread the word! bit.ly/duradash25

A new spinal CSF Leak paper 📝 in AJNR: a patient-physician collaboration to develop a structured reporting system for myelography in spontaneous intracranial hypotension, from @andrewcallenmd.bsky.social, @neuroradlal.bsky.social, @legalnomads.com, et al.: www.ajnr.org/content/earl...

Summary image for that paper, here:

Feb 28th is #rarediseaseday. Spontaneous intracranial hypotension (SIH), secondary to spinal CSF leak, is a rare disorder. SIH affects an estimated 4 in 100,000 people every year—although the condition is still underdiagnosed.

Rare diseases like SIH are widespread, complex, & deeply impactful.

"This study showed that type 2 leaks are actually due to a lateral dural nerve root sleeve tear through which the arachnoid herniates" — not from ruptured meningeal diverticula, as was previously thought. By @niklasluetzen.bsky.social, @neuroradlal.bsky.social et al: pubs.rsna.org/doi/10.1148/...

“This study showed that type 2 leaks are actually due to a lateral dural nerve root sleeve tear through which the arachnoid herniates, which contrasted the common perception that these leaks result from ruptured meningeal diverticula.” pubs.rsna.org/doi/10.1148/...

Videos of all 40+ presentations from the 2nd annual Bridging the Gap conference have been uploaded, and can be viewed on our Bridging the Gap 2024 landing page. We've also included transcripts for each talk: spinalcsfleak.org/conferences/...

Thank you to all who joined us for our 2024 conference!

"The paucity of research in the field also leaves a gap in our knowledge about whether distinct headache characteristics, and/or accompanying symptoms, can accurately distinguish between the various causes of orthostatic headache".

New paper w/ summary below: journals.sagepub.com/doi/full/10....