Csfdisordered

Sufferer of Orthostatic Headache for years. Now, second half of day & Brain Fog. Advocating for CSF Disorders, especially SIH, CSF Leaks, and IIH.

[Csfdisordered @foggyleakybrain]

Another person affected by CSF Leak committed suicide. Acquired chronic PDPH from a LP. She leaves behind two kids. May she rest in a better place now.

When will people realize, CSF Leaks are criminally underrecognized and not easily diagnosable?

#notjustaheadache #csfleak

[CSFLeakMatters @CSFLeakMatters]

This is an unintentionally good visual of what it’s like to live with a profoundly disabling CSF Leak. Info just doesn’t stick.

[WouterSchievink @WouterSchievink]

Happy Fourth of July! I treasure any note of appreciation from a patient or patient’s family. On this semiquincentennial and as an American by choice this one stood out. I thank and am eternally grateful to the USA for the opportunities given to me 🗽 🇺🇸

[Andrew L Callen MD @AndrewCallenMD]

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.

https://t.co/Ah5mIkT1AK

[Csfdisordered @foggyleakybrain]

@AndrewCallenMD @TheAJNR @AjayMadhavanMD I love your research. Keep up fighting the good fight!

[Spinal CSF Leak Canada Charitable Organization @SpinalCSFCanada]

🚨New Publication 🚨
“Out of the Reading Room: The Case for Patient-Facing Neuroradiology in Spinal CSF Leak Care”
Andrew L. Callen
American Journal of Neuroradiology June 2026, ajnr.A9496; DOI: https://t.co/2gsSUCRGex

[Csfdisordered @foggyleakybrain]

This presents a significant diagnostid challenge: which pressure is most relevant in a particular case? How to measure it?

[Csfdisordered @foggyleakybrain]

Repost Marek Swaboda, PhD:

How many different intracranial pressures are there?

We often simplify the physical reality of the cranium. We, me included, say ICP this, ICP that. In reality, there are many distinctly different pressures of cerebrospinal fluid inside the cranium.

[Csfdisordered @foggyleakybrain]

passages, with pressures varying due to flow).

We will have different subdural, ventricular, and aqueduct pressures, and so on. The situation gets even more complex with blockages, malformations, and trauma.

[Dr Sharath Kumar G @SharathKumarGG7]

https://t.co/vlxNmYQNfZ

[Andrew L Callen MD @AndrewCallenMD]

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.

https://t.co/KueEoWECGW

[KC Martin-Stone @KCMartinStone]

I had a specialist ask me once for ‘a bit of empathy both ways’ because my disabling condition was ‘hard for him’… while he refused the tests & treatments I needed.

[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

[Miss DIAGNOSED @_MISS_DIAGNOSED]

And this clarity is why CSF leak patients need access to Photon Counting scanners in the UK. ⏰

[Csfdisordered @foggyleakybrain]

The craziest cases are the ones where young healthy active patients suddenly become bedridden with classic leak symptoms & yet receive utterly normal imaging.

We need a breakthrough.

[Csfdisordered @foggyleakybrain]

Shower thought:
CSF Leak diagnostics often involve punctures into the back.

No healthy person would subject to such tests - many are even afraid of accepting needles for blood tests.

But CSF Leak Patients are sick enough. Our QoL is low. So we beg for diagnostics regardless.

[Stanford Pain Medicine @StanfordPain]

Quality of life should be a medical outcome, not an afterthought.

[Stanford Pain Medicine @StanfordPain]

New consensus guidelines on imaging for spontaneous intracranial hypotension (SIH):

-Start with a brain MRI (with contrast)
-Add a spine MRI to look for possible CSF leaks
-Use advanced imaging to pinpoint the leak when needed
-Keep in mind: imaging can be normal even when SIH is present
-Clinical judgment remains key in diagnosis and care.

Source: https://t.co/1oBqNKjVEe

@PeterGKranz @DukeNeurorad @TimAmrheinMD @MCNeurovasc @AndrewCallenMD @CURadiology @DrIanCarroll @LeviChazen @HSpecialSurgery @JCGneuro @TroyHutchins3 @MarkMamloukMD @UCSFRADCME @KPSantaClara @iantmark @MayoRadiology @marcelmaya @SimyParikh @vinil_shah @UCSFimaging @AsheshThaker @CUMedicalSchool

[Csfdisordered @foggyleakybrain]

@WouterSchievink @spinalCSFleak @issclsociety Good one!
I guess the patients despite resolval of SLEC were indeed still leaking, perhaps just at a slower rate.

[Miguel Quintero-Consuegra, M.D @DrMigueQC]

apply to this one of a kind fellowship!! @spinalCSFleak