CSFLeakMatters
@CSFLeakMatters
There is dignity in a diagnosis. Once a research & clinical OD and nationwide speaker, now a decade completely flattened by spontaneous Spinal Fluid Leaks.
alz-journals.onlinelibrary.wiley.com/doi/10.1002/tr…. Failure to diagnose CSF leaks has devastating, long term consequences, including dementia and TBI. Thanks to those doctors who fight on our behalf!
This is a nice paper: Mesoscale CISS Imaging for the Detection of Dural Defects in Spinal CSF Leaks. Wegscheid et al. medrxiv.org/content/10.110…
Highly disabling indeed. Too many remain bed bound after years of failed interventions, misunderstood because "brain sick” is invisible.
🧠 World Brain Day 🧠 On #WorldBrainDay and every day, we advocate for greater awareness and more research to improve diagnostic tools, treatment options, and long-term outcomes for patients affected by #spinalCSFleak/#SIH
“A discogenic microspur is a common incidental finding and may be found in almost one-third of the general population. The length of the culprit microspur and the diameter of the spinal canal are distinct morphologic characteristics for type I associated CSF leaks."
"Prevalence and Characteristics of Microspurs in Patients with Spontaneous Intracranial Hypotension Compared with the General Population" doi.org/10.3174/ajnr.A… @DanialNasiri94 @The_ASSR
For those who couldn’t attend, we’ve shared threads covering many of the talks: Day 1: x.com/spinalCSFleak/… Day 2: x.com/spinalCSFleak/… Our thanks once again to the clinicians and researchers whose crucial work is moving the field forward.
We are back with updates from Day 2 of the 2025 Intracranial Hypotension conference in Amsterdam, with photos of the talk slides courtesy of our Board members, Vice-President Kyle Spawn and Isaac Brodsky, who were able to attend in person.
Below is Dr. @WouterSchievink’s talk from the Superficial Siderosis Research Alliance’s annual symposium this past June, presenting on surgery in superficial siderosis:
#neurosurgeon Dr. Wouter Schievink on Surgical Treatment of Superficial Siderosis youtu.be/cIiJs09CpmQ?si… @WouterSchievink @spinalCSFleak #2025SSsymposium
#neurosurgeon Dr. Wouter Schievink on Surgical Treatment of Superficial Siderosis youtu.be/cIiJs09CpmQ?si… @WouterSchievink @spinalCSFleak #2025SSsymposium
@PeterGKranz announcing the new International Society for Spinal CSF leak @issclsociety
1/2 To celebrate #ParentsDay2025 we've sat down with Trustee and Mum of two; Bern Hard, to talk through her #parentingtips and hear how she told her sons about her #CSFLeak diagnosis...
Key Point 2 from the article Childhood-onset Hydrocephalus by Dr. Shenandoah Robinson, from the June Disorders of #CSF Dynamics issue, which is available to subscribers at hubs.la/Q03vR49h0. #Neurology #NeuroTwitter #MedEd
YES!!! Louder for those in back. CSF Leaks can and often do “ ... provoke just about any constellation of symptoms...”
I think my main take away from this awesome issue on CSF Dynamics was that they can be like sarcoidosis... and provoke just about any constellation of symptoms and should be in your broad differential dx for "something weird is going on." Disagree?? See below.
In other words, MCAS patients were right, not “crazy”. NOW can we treat anxiety as a symptom and not a cause?
A new study reveals #MCAS patients are up to 23x more likely to experience neurologic + psychiatric symptoms, like fatigue, brain fog, migraines, anxiety, & PTSD, compared to healthy controls. Most common symptoms in MCAS: • Fatigue (87%) • Cognitive dysfunction (88%) •…
In rare diseases, patients are forced to self-advocate while desperately sick; in the case of many CSF Leaks, they do so with desperately sick BRAINS affecting multiple systems and the ability to think clearly. These are STRONG people, despite their usually weak presentation.
Part One of Two: Your Guide to Self-Advocacy: including the reasons why self-advocacy is so necessary, the benefits of practicing it, and tips on how you can do it well - both generally and for appointments specifically. #csfleaks #csfleakassociation #selfadvocacy #patientvoice
##JürgenBeck discusses minimally invasive surgery for ventral CSF leaks at Amsterdam CSF leak meeting
Presenting our work on minimally invasive surgery for disconnection of CVF at 2025 Intracranial Hypotension Conference #SIH #CSFleak @Manjit_Matharu @SayalParag
Our next @ASRA_Society educational webinar is next Tuesday, July 8 at 4 pm ET! Join us as we discuss post-dural puncture #headache (PDPH): its criteria, common myths, treatment options, how to minimize risk, etc. Free to all to join live, just RSVP: ow.ly/WOEK50WjkrJ
Mystery headaches left a New England mom in a coma until rare brain leak diagnosis saved her life | Click on the image to read the full story wcvb.com/article/sponta…
X would have me believe the 2025 IH conference expanded and captured a lot more interest this yr, as I’m seeing more tweets like this appreciative one. Leak patients are encouraged by the hard work of @WouterSchievink, @PeterGKranz and the conf team. Bedankt!
Fantastic 2 days in beautiful Amsterdam learning the latest developments in SIH and meeting some great people. Thanks for a great conference! @NeuroradLal @PeterGKranz @brainscandan #ISSL #SIH