🇨🇦 National health charity with a vision to improve the health and lives of those suffering from Intracranial Hypotension caused by Spinal CSF Leaks.
Canada
Joined December 2018
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Spinal CSF Leak Canada Charitable Organization retweeted
great work lead by Zaid Saadeh! @MayoMN_RadRes
Spinal CSF Leak Canada Charitable Organization retweeted
Hard to put into words what this means.
A $50M gift to help us transform care for patients with CSF leaks.
I’m incredibly grateful, humbled by the trust, and feel an enormous responsibility to make sure this changes what is possible for these patients.
A remarkable day. And really, just the beginning.
news.cuanschutz.edu/news-sto…
Spinal CSF Leak Canada Charitable Organization retweeted
Chronic ventral or lateral spinal CSF leaks can cause progressive weakness and atrophy of the shoulders and upper extremities. It is often misdiagnosed and can mimic ALS. Early surgical repair is crucial @spinalCSFleak @alsassociation @issclsociety neurology.org/doi/10.1212/WN…
Spinal CSF Leak Canada Charitable Organization retweeted
Excited to share this newly published pictorial review in @PedRadJournal: “Detecting the Drip: Pediatric Neuroradiologist Guide to Spinal CSF Leaks.”
A practical approach to imaging, localization, and treatment of pediatric spinal CSF leaks. @The_ASPNR
link.springer.com/content/pd…
Spinal CSF Leak Canada Charitable Organization retweeted
For years, patients with spinal CSF leaks have struggled to explain just how disabling the condition can be.
New research puts a number on it, and the results suggest the burden may rival or exceed that of many other chronic neurological and pain conditions. bit.ly/4yckTeY
Spinal CSF Leak Canada Charitable Organization retweeted
đź“Ł Save the date for our next CSF leak rounds in September!
đź“… When: Sept 15, 2026 - 12:30pmPT | 3:30pmET | 7:30pmGMT
🗣️ Presenters: neurologists Drs. Farnaz Amoozegar and Katharina Wolf
✉️ Zoom link will be sent to all members closer to the meeting
ISSCL.org
Spinal CSF Leak Canada Charitable Organization retweeted
New in @TheAJNR :
I’ve never written a paper in quite this format before, but it came from a recurring issue I see in #spinalCSFLeak care.
For selected patients with suspected SIH, the neuroradiologist’s role may need to extend beyond the report.
The task is not just to interpret images, but to integrate the clinical story, prior imaging, myelographic technique, procedural options, and uncertainty into a coherent next step.
In a disease where the tests are imperfect and the techniques are evolving, patient-facing neuroradiology can meaningfully change care.
ajnr.org/content/early/2026/…
Spinal CSF Leak Canada Charitable Organization retweeted
*OPEN ACCESS* In this comprehensive translation study combining human genetics, functional assays, and mouse models we showed that FBN2 mutations increase susceptibility to spontaneous CSF leaks. Science has entered our field @spinalCSFleak @issclsociety pubmed.ncbi.nlm.nih.gov/4230…
Spinal CSF Leak Canada Charitable Organization retweeted
Proud to have collaborated with the @spinalCSFleak Foundation and a remarkable group of patient advocates on this project. Patients are the true experts on the financial, professional, and emotional costs of navigating a fragmented diagnostic journey. This study helped quantify those burdens and underscores the value of including patients as partners in research.
To quantify the barriers to care spinal CSF leak patients face, the Foundation collaborated with @AndrewCallenMD and @DanielM737 on a patient survey and paper.
We are thrilled to share that it has been accepted by @TheAJNR!
Abstract here: ajnr.org/content/early/2026/…
Spinal CSF Leak Canada Charitable Organization retweeted
LAST NIGHT: Halifax City Hall and Province House lit-up purple for Spinal CSF Leak Awareness Week. CSF leaks can lead to a debilitating neurological condition known as intracranial hypotension, and patients say raising awareness is the first step in prevention. @SpinalCSFCanada
Spinal CSF Leak Canada Charitable Organization retweeted
Does CSF only flow in one direction through CSF-venous fistulas or can blood leak back into the subarachnoid space from the venous circulation? In this study we postulate that to and fro flow can happen in these fistulas @spinalCSFleak @issclsociety ajnr.org/content/early/2026/…
Spinal CSF Leak Canada Charitable Organization retweeted
Now online in @TheAJNR :
In patients with suspected #spinalCSFleak but negative myelography, higher spinal compliance was associated with clinical benefit after subsequent empiric blood patching.
Not a decision rule, but an interesting physiologic signal in a tough subgroup.
ajnr.org/content/early/2026/…
Spinal CSF Leak Canada Charitable Organization retweeted
“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.
Spinal CSF Leak Canada Charitable Organization retweeted
New @TheAJNR #CSFLeak paper out today:
ajnr.org/content/early/2026/…
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… ↓
Spinal CSF Leak Canada Charitable Organization retweeted
Short summary of spinal CSF leak! Awareness is key
@CSFLeakMatters @CSFleaks @csfleakuk @csfleakaware @SpinalCSFCanada @spinalCSFleak
Spinal CSF Leak Canada Charitable Organization retweeted
4 weeks bedridden with severe postural headaches.
Outside MRIs were reported as "unremarkable," but upon careful review at Manipal Hospital Kanakapura Road, we spotted the subtle signs of a spinal CSF leak. Treated in the exact same sitting, she walked out upright and pain-free! đź§
#SpinalCSFLeak @ManipalHealth
Spinal CSF Leak Canada Charitable Organization retweeted
I joined Bendy Bodies to talk about CSF leaks, which are both underrecognized and over-simplified.
We covered the leaks, the mimics, the myths, and why “low pressure” is often the wrong starting point.
Great conversation with @BluesteinLinda
podcasts.apple.com/us/podcas…
Spinal CSF Leak Canada Charitable Organization retweeted
🇰🇷 🔖 Strong work from Korea with multiple publications on #SIH #SpinalCSFleak!
Mi Ji Lee and colleagues:
Flow-void sign validation: thejcn.com/DOIx.php?id=10.39…
Ultrafast CTM variant when CTF not available: thejcn.com/DOIx.php?id=10.39…
@issclsociety @spinalCSFleak
Spinal CSF Leak Canada Charitable Organization retweeted
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:
headachejournal.onlinelibrar…
