Spinal CSF Leak Foundation

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.

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.

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:

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:

Spontaneous Intracranial Hypotension - Symptoms, Causes, Treatment | NORD Learn about Spontaneous Intracranial Hypotension, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD

Today — and every day — we aim to uplift the voices of those affected by SIH & other types spinal CSF leak.

If you'd like to learn more about SIH, please see this National Organization for Rare Disorders, Inc. (NORD) article about SIH, written by Dr, @conniedelinemd.bsky.social and Dr. Schievink:

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

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.

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!

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....

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

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":

We are currently editing the raw videos and reviewing the transcripts, but do not have an estimate of when they will be posted yet.

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:

Hi Paul, we already have a list for spinal CSF leaks: bsky.app/profile/spin...

And a starter pack: go.bsky.app/Bnpe3H6

Unfortunately there are not many physicians in the field here yet, but hopefully this changes.

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...

Glad to hear our resources helped support you. It truly is such a debilitating condition.

Great to see other orgs on here too!

For Canada — @spinalcsfleakca.bsky.social

And for the UK —
@csfleak.bsky.social

Thank you and welcome! I added you to our spinal CSF leaks starter pack: go.bsky.app/Bnpe3H6