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Spinal CSF Leak Foundation Profile
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
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@spinalCSFleak
Spinal CSF Leak Foundation
25 days
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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@SpinalCSFCanada
Spinal CSF Leak Canada Charitable Organization
11 hours
"๐๐š๐ฏ๐ข๐ ๐š๐ญ๐ข๐ง๐  ๐๐ž๐๐ข๐š๐ญ๐ซ๐ข๐œ ๐’๐ฉ๐ข๐ง๐š๐ฅ ๐‚๐’๐… ๐‹๐ž๐š๐ค: ๐ˆ๐ง๐ฌ๐ข๐ ๐ก๐ญ๐ฌ ๐ข๐ง๐ญ๐จ ๐ƒ๐ข๐š๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐š๐ง๐ ๐‚๐š๐ซ๐ž" ๐๐ซ๐ž๐ฌ๐ž๐ง๐ญ๐ž๐ ๐›๐ฒ: ๐ƒ๐ซ. ๐Œ๐ž๐ฌ๐ก๐š ๐Œ๐š๐ซ๐ญ๐ข๐ง๐ž๐ณ, ๐Œ๐ƒ ๐Ÿšจ ๐…๐‘๐„๐„ ๐—ช๐—ฒ๐—ฏ๐—ถ๐—ป๐—ฎ๐—ฟ - ๐—ฅ๐—ฒ๐—ด๐—ถ๐˜€๐˜๐—ฒ๐—ฟ ๐—ต๐—ฒ๐—ฟ๐—ฒ: https://t.co/NqsTIIo6JF
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@MarkMamloukMD
Mark Mamlouk
3 days
Iโ€™ve 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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@WouterSchievink
WouterSchievink
4 days
Chronic treatment with prednisone, dexamethasone, and methotrexate for โ€œidiopathic hypertrophic pachymeningitisโ€ in a patient with second half of the day headaches and normal CT-myelogram. CSF-venous fistula at T8 Shouldโ€™ve read โฆ@PeterGKranzโฉ10 myths โฆ@spinalCSFleak
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@KerenLeah
Keren Leah
6 days
๐Ÿ†•๏ธ๐Ÿ”“ Critical Reappraisal and Validation of the Bern Score System for Diagnosing Spontaneous Intracranial Hypotension โ„น๏ธ The authors assessed both sensitivity and specificity in an East Asian cohort. โœ’๏ธ Soyoun Choi et al. #spinalCSFleak #CSFleak #SIH https://t.co/7szby7o4eY
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@NeuroradLal
Lalani Carlton Jones
9 days
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 ๐Ÿคฉ ๐Ÿ‘๐Ÿพ@TheAJNR @spinalCSFleak @issclsociety https://t.co/Y8SL2ITt4R
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@Federicoca36019
Federico cagnazzo
17 days
New in JNIS: a venographic classification of the epidural plexus (EP) to guide CVF embo through EP navigation. Success: >90% (Types Iโ€“II) โ†’ 50% (Type III). Type III = longer fluoroscopy + more EP perforations โ†’ prefer segmental vein access. Clinical outcomes highly favorable.
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@TheAJNR
AJNR
21 days
"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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@MarkMamloukMD
Mark Mamlouk
25 days
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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@spinalCSFleak
Spinal CSF Leak Foundation
24 days
"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:
@TheAJNR
AJNR
24 days
"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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@TheAJNR
AJNR
27 days
"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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@MarkMamloukMD
Mark Mamlouk
25 days
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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@spinalCSFleak
Spinal CSF Leak Foundation
25 days
For patients whoโ€™d 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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@spinalCSFleak
Spinal CSF Leak Foundation
25 days
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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@AndrewCallenMD
Andrew L Callen MD
27 days
Patients with #SIH often wait years for a diagnosisโ€”but 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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@AndrewCallenMD
Andrew L Callen MD
26 days
Seeing the unseen โ€” thatโ€™s the challenge and the promise of imaging. My episode on Frame by Frame: Rethink Imaging explores โ€œDetecting the Undetectableโ€ and the evolving story of spinal CSF leaks. ๐ŸŽง
Tweet card summary image
podcasts.apple.com
Podcast Episode ยท Frame by Frame: Rethink Imaging ยท 10/09/2025 ยท 40m
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@AHDAorg
AHDA/THA
1 month
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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@spinalCSFleak
Spinal CSF Leak Foundation
1 month
๏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€
@HeadacheJournal
Headache Journal
1 month
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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