Spinal CSF Leak Foundation
@spinalcsfleak.org
We are a United States 501(c)3 nonprofit organization that helps raise awareness, educate, and support research on intracranial hypotension and spinal cerebrospinal fluid (CSF) leaks.
spinalcsfleak.org
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Intracranial hypotension due to spinal CSF leak is an important and under-diagnosed cause of new onset headache.
spinalcsfleak.org
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:
You can learn more about us on our website:
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".
Join us for this year’s fully virtual event on Nov 15th. Free for patients! The theme this year is: “Making the Invisible Visible".
August 20, 2025 at 3:11 PM
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".
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.
June 9, 2025 at 12:05 PM
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:
June 8, 2025 at 12:15 PM
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!
June 7, 2025 at 2:45 PM
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:
June 6, 2025 at 1:20 PM
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:
June 4, 2025 at 12:13 PM
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.
June 2, 2025 at 5:27 PM
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!
![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.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:4gol6rt6bubrfknvxjwhiwqc/bafkreib7xlv3jkuk5lb3dmmnrqax6tknhcdd7xpbovkt6pimwrzf4hfhvq@jpeg)
June 1, 2025 at 5:50 PM
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
May 30, 2025 at 4:14 PM
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...
March 27, 2025 at 4:05 PM
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:
Efficacy of Traditional Epidural Patching versus Patching within Spinal Longitudinal Extradural Collections for Ventral Dural Cerebrospinal Fluid Leaks | Radiol...
Patching within spinal longitudinal extradural collections (SLECs) significantly improved rates of resolution of organized SLECs compared with traditional methods, although overall efficacy for ven...
pubs.rsna.org
March 26, 2025 at 3:56 PM
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:
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...
www.ajnr.org
March 23, 2025 at 1:57 PM
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.
Rare diseases like SIH are widespread, complex, & deeply impactful.
February 28, 2025 at 5:34 PM
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.
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/...
February 19, 2025 at 3:44 PM
"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/...
February 19, 2025 at 2:15 AM
“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/...
Reposted by Spinal CSF Leak Foundation
"“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
doi.org/10.3174/ajnr...
@NeuroradLal #CSFLeak #FellowsJournalClub
February 13, 2025 at 4:34 PM
"“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
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!
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
February 6, 2025 at 4:05 PM
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!
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!
Thank you to all who joined us for our 2024 conference!
January 28, 2025 at 6:28 PM
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!
Thank you to all who joined us for our 2024 conference!
Reposted by Spinal CSF Leak Foundation
🚨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
📍Please save the date - Registration will open soon!
>>https://www.spinalcsfleakcanada.ca/program
January 22, 2025 at 10:05 PM
🚨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
📍Please save the date - Registration will open soon!
>>https://www.spinalcsfleakcanada.ca/program
Reposted by Spinal CSF Leak Foundation
🚨 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
#CSFLeakAssociation #CSFleak
January 18, 2025 at 8:14 PM
🚨 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
#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....
New paper w/ summary below: journals.sagepub.com/doi/full/10....
January 17, 2025 at 3:42 PM
"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....
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
www.frontiersin.org
December 18, 2024 at 4:28 PM
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":
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:
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...
cedars.cloud-cme.com
December 11, 2024 at 8:19 PM
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:
Reposted by Spinal CSF Leak Foundation
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 discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns
www.frontiersin.org/research-top...
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...
www.frontiersin.org
November 30, 2024 at 6:11 PM
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 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
For Canada — @spinalcsfleakca.bsky.social
And for the UK —
@csfleak.bsky.social
November 24, 2024 at 7:53 PM
Great to see other orgs on here too!
For Canada — @spinalcsfleakca.bsky.social
And for the UK —
@csfleak.bsky.social
For Canada — @spinalcsfleakca.bsky.social
And for the UK —
@csfleak.bsky.social