Spinal CSF Leak Foundation

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Spinal CSF Leak Foundation

Spinal CSF Leak Foundation

@spinalCSFleak

A US 501(c)3 nonprofit org that helps raise awareness, educate, & support research on intracranial hypotension & spinal cerebrospinal fluid (CSF) leaks.

Katılım Temmuz 2014
525 Takip Edilen2.9K Takipçiler
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Spinal CSF Leak Foundation
Spinal CSF Leak Foundation@spinalCSFleak·
At BTG 2025, we played a video of our global patient community sharing their lived experience with spinal CSF leak. The video is now available: youtu.be/L6AgcN29LHc Thank you to all who contributed! We hope this video helps open supportive conversations.
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Peter Kranz
Peter Kranz@PeterGKranz·
@TheAJNR My 🔥hot take: If you aren’t seeing rebound intracranial hypertension after TVE, it’s because you either aren’t embolizing fistulas or you aren’t asking about it
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AJNR
AJNR@TheAJNR·
Check our Editor’s choice for the month: ‘’ Incidence and Predictors of Rebound Intracranial Hypertension after Transvenous Embolization of CSF-Venous Fistulas’’ In this single-center retrospective study, the incidence and severity of rebound intracranial hypertension after transvenous embolization for CSF-venous fistulas causing SIH appeared to be 80%, with 54% of patients experiencing moderate-to-severe symptoms and 7.6% requiring therapeutic lumbar puncture. Treatment of a single fistula and higher preprocedural opening pressures were associated with an increased risk of more severe RIH and need for intervention. ajnr.org/content/47/5/1…
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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
“Classic” textbook orthostatic headache was actually more common in the myelography-negative group than in patients with confirmed CVF. The most common CVF phenotype was instead “partial orthostatic” headache: posture clearly matters, but not in the clean binary way we traditionally describe. This does NOT mean orthostatic headache is unimportant. It does suggest we may need a more nuanced understanding of what a “good story for a leak” actually looks like in low-Bern patients.
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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
New @TheAJNR #CSFLeak paper out today: ajnr.org/content/early/… We focused specifically on low-Bern patients, the diagnostically ambiguous group where clinical history often drives the decision to pursue myelography for suspected CVF. One of the most interesting findings was… ↓
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WouterSchievink
WouterSchievink@WouterSchievink·
Some patients continue with CSF leak symptoms although there is no longer any evidence of a leak on imaging. Surgical exploration and dural repair can result in symptom resolution for a highly selected group of patients @spinalCSFleak @issclsociety pubmed.ncbi.nlm.nih.gov/41927342/
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Spinal CSF Leak Foundation
Spinal CSF Leak Foundation@spinalCSFleak·
An exciting milestone for the ileak registry℠, our international patient registry designed to help advance research & improve understanding of spinal CSF leak: materials have been formally submitted for processing with the Institutional Review Board (IRB). More details soon!
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Spinal CSF Leak Foundation
Spinal CSF Leak Foundation@spinalCSFleak·
“This report describes the CT fluoroscopy–guided circumferential EBP, a technique that achieves 360° coverage of patching material around the thecal sac using combined ventral transforaminal and dorsal interlaminar injections” ajnr.org/content/47/4/1… From the @DukeRadiology team:
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Spinal CSF Leak Foundation
Spinal CSF Leak Foundation@spinalCSFleak·
“Together, these insights reinforce the notion that in SIH, imaging must be interpreted as a window into a patient's physiology in the context of their symptoms, rather than a direct marker of the presence or absence of a spinal CSF leak, or a proxy for symptom burden.”
Andrew L Callen MD@AndrewCallenMD

Most patients with CSF pressure disorders don’t read the textbook. This review is about what to do when the imaging, symptoms, and physiology don’t line up, and why “high” vs “low” pressure is often the wrong framework. 🔓Open access: …adachejournal.onlinelibrary.wiley.com/doi/10.1111/he…

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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
We see more and more lateral dural tear #CSFleaks with small epidural fluid missed because the correct MRI sequences were not obtained. 3DT2FS really shines in this context. Sometimes the 🔑 isn't new technology, but re-understanding how to look at existing data.
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WouterSchievink
WouterSchievink@WouterSchievink·
Spinal CSF-venous fistulas almost always arise from meningeal diverticula. The diverticular size can vary from tiny (submillimeter) to massive (think dural ectasia). At least one-third of diverticula change size when a fistula forms ⁦@spinalCSFleakpubmed.ncbi.nlm.nih.gov/41730631/
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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
One of the most interesting observations from the study. In this patient, an acute sacral dural tear evolved after patching into cystic structures that could easily be interpreted as “Tarlov cysts.” Surgery later confirmed a persistent leak with arachnoid herniation. Not all Tarlov cysts are pathologic — but some may represent the chronic end of a dural tear spectrum. (Figure from the paper 👇)
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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
Sacral dural tears in #SIH are probably under-recognized. Why? Because the sacrum often isn’t scrutinized, or sometimes even included in the field of view on routine spine imaging. In a new multicenter @AJNR study we found: • Sacral leaks often produce isolated sacral CSF collections • Image-guided patching can lead to meaningful clinical & imaging improvement • Longitudinal imaging suggests some lesions mimicking “Tarlov cysts” may actually represent chronic or partially healed leaks Encouraging to see multicenter collaboration continue to emerge in SIH imaging/treatment research. ajnr.org/content/early/…
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AJNR
AJNR@TheAJNR·
"Improved Conspicuity of CSF-Venous Fistulas with Saline Pressure Augmentation: A Multi-Institutional Case Series" @AjayMadhavanMD doi.org/10.3174/ajnr.A…
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Andrew L Callen MD
Andrew L Callen MD@AndrewCallenMD·
One of the most common excuses for not using atraumatic needles for LPs: “They cost more” New study shows the opposite is true when you look downstream: • 19 fewer PDPH per 100 LPs • Fewer hospitalizations & blood patches • Net cost savings The cheapest needle is the one that doesn’t cause a leak. link.springer.com/article/10.118…
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