Spinal CSF Leak Foundation
@spinalCSFleak
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A US 501(c)3 nonprofit org that helps raise awareness, educate, & support research on intracranial hypotension & spinal cerebrospinal fluid (CSF) leaks.
Joined July 2014
Bridging the Gap 2025 registration is now open! This year's event is both virtual & FREE, with 4 talks that we hope advance shared understanding between physicians & patients. BTG is held in partnership with @AndrewCallenMD & @CUAnschutz. Learn more: https://t.co/e5u9ddRBBS
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"๐๐๐ฏ๐ข๐ ๐๐ญ๐ข๐ง๐ ๐๐๐๐ข๐๐ญ๐ซ๐ข๐ ๐๐ฉ๐ข๐ง๐๐ฅ ๐๐๐
๐๐๐๐ค: ๐๐ง๐ฌ๐ข๐ ๐ก๐ญ๐ฌ ๐ข๐ง๐ญ๐จ ๐๐ข๐๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐๐ง๐ ๐๐๐ซ๐" ๐๐ซ๐๐ฌ๐๐ง๐ญ๐๐ ๐๐ฒ: ๐๐ซ. ๐๐๐ฌ๐ก๐ ๐๐๐ซ๐ญ๐ข๐ง๐๐ณ, ๐๐ ๐จ ๐
๐๐๐ ๐ช๐ฒ๐ฏ๐ถ๐ป๐ฎ๐ฟ - ๐ฅ๐ฒ๐ด๐ถ๐๐๐ฒ๐ฟ ๐ต๐ฒ๐ฟ๐ฒ: https://t.co/NqsTIIo6JF
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Iโve been reflecting on advances in spinal CSF leak care over the past five years โ and I truly believe it represents one of the most rapid and transformative evolutions in modern medicine.
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Chronic treatment with prednisone, dexamethasone, and methotrexate for โidiopathic hypertrophic pachymeningitisโ in a patient with second half of the day headaches and normal CT-myelogram. CSF-venous fistula at T8 Shouldโve read โฆ@PeterGKranzโฉ10 myths โฆ@spinalCSFleak
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๐๏ธ๐ Critical Reappraisal and Validation of the Bern Score System for Diagnosing Spontaneous Intracranial Hypotension โน๏ธ The authors assessed both sensitivity and specificity in an East Asian cohort. โ๏ธ Soyoun Choi et al. #spinalCSFleak #CSFleak #SIH
https://t.co/7szby7o4eY
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How useful are probabilistic SIH scoring systems in daily practice? A source of ongoing debate! CSF leak expert @AjayMadhavanMD takes us through a pragmatic approach to cases & what his latest work adds to this ๐คฉ ๐๐พ@TheAJNR @spinalCSFleak @issclsociety
https://t.co/Y8SL2ITt4R
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New in JNIS: a venographic classification of the epidural plexus (EP) to guide CVF embo through EP navigation. Success: >90% (Types IโII) โ 50% (Type III). Type III = longer fluoroscopy + more EP perforations โ prefer segmental vein access. Clinical outcomes highly favorable.
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๐จStudy supported by @spinalCSFleak
https://t.co/5fH9S4NxrR๐จ Lumbar punctures are NO LONGER the standard for diagnosing spinal CSF leak! ๐ ~32% with SIH have NORMAL opening pressure. Symptoms + imaging now drive diagnosis. @WouterSchievink @ConnieDelineMD #SpinalCSFLeak #SIH
headachejournal.onlinelibrary.wiley.com
Spontaneous intracranial hypotension (SIH) is often referred to as โlow pressureโ and the measurement of cerebrospinal fluid (CSF) pressure is a key criterion for diagnosing SIH; however, the spinal...
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"Histopathologic Analysis of 5 Patients with CSF-Venous Fistulas after Surgical Nerve Root Ligation and Resection" https://t.co/n5NnS669wF
@The_ASSR
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New study alert! Our team analyzed 100 patients with SIH and found that spine MRI diverticular patterns can reliably predict CSF-venous fistula (CVF) location โ a crucial step toward more targeted & efficient myelography. Perhaps the holy grail of CVFs? https://t.co/Jv89HYIZQb
ajnr.org
BACKGROUND AND PURPOSE: CSF-venous fistulas (CVFs) are an increasingly recognized cause of spontaneous intracranial hypotension and require invasive myelography for localization. Whether spine MRI...
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"Careful understanding and refinement of patient positioning in dynamic CT myelography ensures the performance of high-fidelity examinations with maximal diagnostic yield, decreasing the need for repeat studies and lumbar punctures." Video article by @AndrewCallenMD et al:
"Technical Aspects of Dynamic CT Myelography: Optimizing Patient Positioning for the Detection of CSF Leaks" https://t.co/PiajYB33xj
@The_ASSR
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"CSF-Venous Fistula Transvenous Onyx Embolization: Evaluation of Onyx Migration into the CSF and Potential One-Way Physiology" https://t.co/lCivMwaiPM
#OpenAccess #CSFLeak
@iantmark; @Mayoradiology; @The_ASSR
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5 new #CSFleak articles in 1 day! And others this week. Thank you @TheAJNR & @theAJNR_EIC for your support in spreading research on this subject! @TimAmrheinMD @iantmark @WouterSchievink @PeterGKranz @TroyHutchins3 @Niklas_Luetzen @ZanderCharlotte @marcelmaya @AndrewCallenMD
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For patients whoโd like to share their lived experience of spinal CSF leak, we are inviting perspectives via a short video that we plan to compile and show at BTG 2025. For topics and instructions, please see here: https://t.co/PVDIJsY1TW We look forward to sharing your voice.
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This year's physician speakers who will discuss their latest research are: @WouterSchievink
@JrgenBeck
@AjayMadhavanMD
@AndrewCallenMD Full agenda, talk titles, and registration here: https://t.co/e5u9ddRBBS We hope to see you there!
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Patients with #SIH often wait years for a diagnosisโbut not all wait equally. Our new @TheAJNR paper explores these disparities and what they mean for equitable neurologic care. Congrats to @Mariapuello18 for leading this project! https://t.co/GD8M1zAXBK
ajnr.org
BACKGROUND AND PURPOSE: Patients with spontaneous intracranial hypotension (SIH) often face substantial delays in diagnosis and treatment. Barriers to accessing specialized care for SIH remain poorly...
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Seeing the unseen โ thatโs the challenge and the promise of imaging. My episode on Frame by Frame: Rethink Imaging explores โDetecting the Undetectableโ and the evolving story of spinal CSF leaks. ๐ง
podcasts.apple.com
Podcast Episode ยท Frame by Frame: Rethink Imaging ยท 10/09/2025 ยท 40m
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Applications are open for Headache on the Hill 2026! No prior experience is required. Patients, caregivers, clinicians, & researchers are encouraged to apply. Kids are welcome too with a dedicated youth track! Apply https://t.co/MtvuFC4swq
#HOH2026 #Migraine #PatientAdvocacy
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๏ฟฝ๏ฟฝ๏ฟฝOur findings highlight the unreliability of current MRI diagnostics to detect patients with chronic PDPH, which must not lead to a mitigation of the diagnosis or a refusal of treatment.โ
Open Access: An MRI study using the Bern score finds that patients with chronic post-dural puncture #headache do not have typical imaging features of #intracranial #hypotension
https://t.co/BHghPObrt4
@ZanderCharlotte et al
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@parnian_habibi inaugural member of the #MarkLab studying #SIH #CSFLeaks with important work to highlight the challenges in diagnosis @MayoRadiology @issclsociety @csfleakinfo
https://t.co/E9sLx9fv11
ajnr.org
BACKGROUND AND PURPOSE: Spontaneous intracranial hypotension (SIH) is a disabling condition that is frequently underdiagnosed due to diagnostic challenges. Delays in diagnosis can be attributed to...
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