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1298 points jgrahamc | 1 comments | | HN request time: 0.218s | source
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s5300 ◴[] No.22880710[source]
If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford.

Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carrol of Stanford's research has indicated, they seem to be highly misdiagnosed/undiagnosed as well.

I know HN has had posts about CSF Leaks before. I truly believe they're one of the worst things we face in this age that can actually be treated with 100% recovery in some cases. However, for far too many, that really means nothing as they'll be sent to a psych facility, nursing home, or become homeless, and die as a whithered husk of what was once a human before they have the slightest indication of what is actually wrong with them, let alone make their way to one of the few places that truly treat the condition.

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rubicon33 ◴[] No.22882983[source]
How DOES one get diagnosed for this? Is there a test?
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s5300 ◴[] No.22883493[source]
If you have zero external support system and literally no money/income... it's an absolute shitshow, and that's about all I can tell you.

Dr. Ian Carroll is arguably the best resource in the world. Starting here is probably a good choice.

https://profiles.stanford.edu/ian-carroll

https://www.mdedge.com/neurology/migraineresourcecenter/arti...

https://youtu.be/QyvWxobqKrc

https://youtu.be/g5lsFIDzazc

No idea why I currently can't find a non walled version of the first link. It's important - and general googling would be "when to suspect a CSF Leak Ian Carroll"

Secondary to Dr. Carroll

Dr. Wouter Schievink at Cedars-Sinai also has good information... He's actually the pioneer of research IIRC.

Saved a dude from a diagnosis of dementia and spending the rest of his deluded days in a nursing home.

https://www.nytimes.com/2017/11/02/magazine/why-was-their-br...

IIRC - in the end, based on decades of patient history, he just opened this guy up as a last resort and nearly missed - but did find the leak. Near full recovery.

It seems to be that there are some very high risk groups, like those with connective tissue disorders - specifically, Ehlers Danlos. Also, from Carroll's findings, a lot of people diagnosed with POTS are often misdiagnosed and truly have some small CSF Leak. Ehlers Danlos and POTS often go hand in hand as well...

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1. garganzol ◴[] No.22883682[source]
Great references. Anonymous browser page works well when trying to get a non-walled access to "when to suspect a CSF Leak Ian Carroll":

https://www.mdedge.com/neurology/migraineresourcecenter/arti...