Spinal CSF Leak Awareness Week starts Mon, June 1st. This year, we are thrilled to share that 58 landmarks across 33 states will light up purple during the week. See the dates & locations on our 2026 leakweek page to visit in your area: https//spinalcsfle...

"Under Pressure: Advancing the Diagnosis of Pediatric CSF Leaks with Digital Subtraction Myelography" doi.org/10.3174/ajnr...

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...

New paper from @andrewcallenmd.bsky.social, Dr. Mamlouk, & others on the efficacy of traditional EBPs vs. patching within SLECs (Spinal Longitudinal Extradural Collections) for ventral dural spinal CSF leaks:

A new study found a 0.49% incidence of hypersensitivity reactions during EBP with fibrin glue, none during 1st exposure, & younger age, lower BMI, & inadvertent intravenous injection during the procedure increase likelihood of reactions:

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/...

"“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks" doi.org/10.3174/ajnr... @NeuroradLal #CSFLeak #FellowsJournalClub

The Spinal CSF Leak Foundation is looking for a new executive director to work remotely & lead our small but dedicated organization in support of our mission. We’re looking for a visionary leader with nonprofit leadership experience & a passion for advocacy. We'd love your help to spread the word!

Help us find a new Executive Director - Spinal CSF Leak Foundation

Help us find a new Executive Director to lead the Spinal CSF Leak Foundation and continue to advance our mission.

spinalcsfleak.org

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!

🚨We’re excited to share our amazing speaker lineup and program for the 2nd Canadian SIH Conference, taking place May 31–June 1, 2025 (Toronto & virtual). 📍Please save the date - Registration will open soon! >>https://www.spinalcsfleakcanada.ca/program

🚨 We're excited to announce our third speaker, Dr Indran Davagnanam, Consultant Neuroradiologist at NHNN. Join to learn about imaging techniques for CSF leak diagnosis and management. Register 👉🏻 tinyurl.com/5n8sunbz #CSFLeakAssociation #CSFleak

"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....

A new research report from Drs. Kraus, Urbach, @niklasluetzen.bsky.social, Fung, Beck, and others on cPDPH and how the condition "puts an immense burden of disease on affected individuals, families, and the health care system":

Frontiers | Chronic post-dural puncture headache–a serious and underrated complication following lumbar puncture: a cohort study

frontiersin.org

Registration is now open for the 2025 Intracranial Hypotension Conference, to be held June 28-29, in Amsterdam. Hosted by Cedars-Sinai, Duke University, Freiburg University, & UvA Amsterdam. Schedule & in-person or virtual ticket options at the link:

Fascinating series of articles on CTD in Neurology in #FrontiersinNeurology including #CSFleak and orthostatic HA. Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns www.frontiersin.org/research-top...

Great to see other orgs on here too! For Canada — @spinalcsfleakca.bsky.social And for the UK — @csfleak.bsky.social

We've made a starter pack for spinal CSF leaks for those interested in the field: go.bsky.app/Bnpe3H6 We'll be adding to it as more people join Bluesky.

Hello Bluesky! We are a 501(c)(3) nonprofit health foundation focused on raising awareness, educating, & funding research for spinal CSF leaks. Our mission is to reduce the suffering of anyone affected by intracranial hypotension or spinal CSF leak. You can learn more about us on our website:

Spinal CSF Leak Foundation - Home - Spinal CSF Leak Foundation

Intracranial hypotension due to spinal CSF leak is an important and under-diagnosed cause of new onset headache.

spinalcsfleak.org