Lynne Johnson

She/her, CSF leak patient & educator

[Headache Journal @HeadacheJournal]

Open Access:
Autonomic dysfunction is common in #SIH.

In patients w imaging-confirmed spontaneous intracranial hypotension, >50% had orthostatic #autonomic abnormalities, w #POTS the most common phenotype - perhaps explaining SIH's orthostatic symptoms

🔗https://t.co/tqYkzDEyOm

[The Neurological Alliance @NeuroAlliance]

New analysis exposes year long waits: together we're urging government action to improve the specialist neuro workforce https://t.co/wQxBL2fAzY

[ISSCL @issclsociety]

Physicians: if you think you are seeing a lot of cases of SIH/Spinal CSF Leak these days, and struggling to get or give appropriate care, imagine what it is like in places where people are not even looking.

This is a global problem.

ISSCL is committed to global care.

[Stanford Pain Medicine @StanfordPain]

One of the biggest mistakes pain clinicians can make is assuming their patients experience pain the same way they would.

Full Soulture episode with @DrSeanMackey: https://t.co/OqIxgXQmvJ

[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

[Andrew L Callen MD @AndrewCallenMD]

New @TheAJNR #CSFLeak paper out today:

https://t.co/7pOA0dlPT0

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… ↓

[International Headache Society @ihs_official]

New in Cephalalgia!
The estimated disability weight (DW) of 0.432 indicates a substantial patient-reported health loss specific to Spontaneous intracranial hypotension (SIH) prior to definitive treatment.
https://t.co/oxF9HwnPbe
#migraine #headache #brain #pain #neurology #neuroscience

[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.

https://t.co/ZS2RrlnrxY

[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

[Lynne Johnson @capecodlynne]

@DocNavarrow (Not an MD) Cool case! If ppl are looking for Chiari, it’s also worth looking for signs of SIH in the differential. (+) Bern Score (or positional HAs, but I recognize this pt is asx) points toward a CSF leak instead of CM-1. Fixing a leak can resolve the syrinx w/o decompression.

[Peter Kranz @PeterGKranz]

@francisdeng @ecalabr @daniel_gewolb @Radiopaedia @ASHNRSociety I can’t tell you how many people with SIH I’ve seen who got sent for LP to “r/o meningitis.”

Tragic lack of understanding about the difference between pachy- and lepto.

[Lynne Johnson @capecodlynne]

@Beckystephens21 @SolidEvidence It’s all about the dose. To reach the levels needed to stop a virus in your system, you’d have to take ‣‣ 50 to 100 times the safe human limit. At that concentration, the drug stops being medicine and becomes a neurotoxin that the human body could not survive.

[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

[AJNR @TheAJNR]

"The Diagnostic Burden of Spontaneous Intracranial Hypotension: Imaging Volume and Specialists’ Involvement Prior to Diagnosis"

https://t.co/brE8qPd6M2

[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.

[Peter Kranz @PeterGKranz]

🗳️Poll:
In light of recent publication trends, should @TheAJNR have a new content subsection for CSF disorders?

[Mark Mamlouk @MarkMamloukMD]

I’ve been reflecting on advances in spinal CSF leak care over the past five years — and I truly believe it represents one of the most rapid and transformative evolutions in modern medicine.

[Lynne Johnson @capecodlynne]

@MarkMamloukMD Thanks so much to you and all of the spinal leak experts for driving these amazing advances!

[Lynne Johnson @capecodlynne]

@melfields77 Spontaneous Intracranial Hypotension: 10 Myths and Misperceptions. Kranz PG, Gray L, Amrhein TJ. Headache. 2018 Jul;58(7):948-959. doi: 10.1111/head.13328. Epub 2018 May 24. PMID: 29797515. https://t.co/Ll9eBcPVpM

PDF: https://t.co/diS6AuXj8T

[Lynne Johnson @capecodlynne]

@pmkmann If you go to the linked page, click on "Info & Metrics", and scroll down, you'll see the contact email address. Shoot them an email politely asking for a copy of the paper. Author responses can vary, but this is pretty customary for personal use.