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Spinal CSF Leak Foundation @spinalcsfleak.org · 30/05/2026

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...

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Reposted by Spinal CSF Leak Foundation

The American Journal of Neuroradiology @theajnr.bsky.social · 29/05/2026

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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 20/08/2025

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".

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Spinal CSF Leak Foundation @spinalcsfleak.org · 09/06/2025

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.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 08/06/2025

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:

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Spinal CSF Leak Foundation @spinalcsfleak.org · 07/06/2025

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!

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Spinal CSF Leak Foundation @spinalcsfleak.org · 06/06/2025

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:

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Spinal CSF Leak Foundation @spinalcsfleak.org · 04/06/2025

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:

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Spinal CSF Leak Foundation @spinalcsfleak.org · 02/06/2025

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.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 01/06/2025

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!

The first myth we’ll discuss is the idea that spinal CSF leak always causes brain MRI signs along with pathologically low CSF pressure.

Although the name intracranial hypotension implies low pressure, spontaneous intracranial hypotension (SIH), a common comorbidity of spinal CSF leak, is better understood as a loss of CSF volume. Many patients have normal or even high spinal opening pressures.

Many patients are told at one point or another that they cannot have a spinal CSF leak if their brain MRI does not show signs of one. However, data shows that at least 20% of spinal CSF leak patients, and 93% of post dural puncture headache patients, have a normal MRI report.

References:

[1] Callen AL, et. al. Relationship of Bern Score, Spinal Elastance, and Opening Pressure in Patients With Spontaneous Intracranial Hypotension. Neurology. 2023 May 30;100(22):e2237-e2246.

[2] Callen AL, et. al. Patterns of clinical and imaging presentations in patients with spontaneous intracranial hypotension due to spinal cerebrospinal fluid venous fistula: A single-center retrospective cross-sectional study. Headache. 2024 Sep;64(8):939-949. Epub 2024 Aug 11. Erratum in: Headache. 2025 Jan;65(1):202.

[3] Cheema S, et al. Multidisciplinary consensus guideline for the diagnosis and management of spontaneous intracranial hypotension. J Neurol Neurosurg Psychiatry. 2023 Oct;94(10):835-843.

[4] Mark IT, et. al. CT-Guided Epidural Contrast Injection for the Identification of Dural Defects. AJNR Am J Neuroradiol. 2025 Jan 8;46(1):207-210.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 30/05/2025

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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 27/03/2025

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...

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Spinal CSF Leak Foundation @spinalcsfleak.org · 23/03/2025

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:

ajnr.org

Hypersensitivity Reactions to Fibrin Glue During Epidural Blood Patching

BACKGROUND AND PURPOSE: Fibrin glue is increasingly incorporated as a component in epidural blood patching (EBP) for the treatment of spinal CSF leaks. Hypersensitivity reactions are a potential compl...

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Spinal CSF Leak Foundation @spinalcsfleak.org · 28/02/2025

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.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 19/02/2025

"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/...

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Spinal CSF Leak Foundation @spinalcsfleak.org · 19/02/2025

“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/...

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Reposted by Spinal CSF Leak Foundation

The American Journal of Neuroradiology @theajnr.bsky.social · 13/02/2025

"“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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 06/02/2025

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!

spinalcsfleak.org

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.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 28/01/2025

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!

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Reposted by Spinal CSF Leak Foundation

🇨🇦 Spinal CSF Leak Canada @spinalcsfleakca.bsky.social · 22/01/2025

🚨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

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Reposted by Spinal CSF Leak Foundation

CSF Leak Association @csfleak.bsky.social · 18/01/2025

🚨 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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 17/01/2025

"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....

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Spinal CSF Leak Foundation @spinalcsfleak.org · 18/12/2024

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":

frontiersin.org

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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 11/12/2024

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:

cedars.cloud-cme.com

2025 Intracranial Hypotension Conference - Cedars-Sinai - Continuing Education (CE)

Cedars-Sinai, 2025 Intracranial Hypotension Conference, 6/28/2025 8:00:00 AM - 6/29/2025 6:00:00 PM, This two-day symposium brings together international experts from Cedars-Sinai, Duke University, Un...

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Reposted by Spinal CSF Leak Foundation

Peter Kranz, M.D. @petergkranz.bsky.social · 30/11/2024

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...

frontiersin.org

Neurology and Connective Tissue

Connective tissue compromise, as is seen in the heritable connective tissue disorders collectively called Ehlers-Danlos Syndrome, but also acquired connective tissue disorders as can be seen in autoim...

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Spinal CSF Leak Foundation @spinalcsfleak.org · 24/11/2024

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

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Spinal CSF Leak Foundation @spinalcsfleak.org · 23/11/2024

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.

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Spinal CSF Leak Foundation @spinalcsfleak.org · 16/11/2024

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:

spinalcsfleak.org

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.

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