CSF leak week info from the Ehler-Danlos Society FB page ✨
One big asterisk to the lumbar puncture thing —
I guess it can be used to diagnose CSF leak?
It can also cause one. And it does so quite often in hypermobile individuals and younger AFAB patients (particularly but not exclusively those with a lower BMI).
Which is a risk that they, uh, don’t always mention when suggesting a lumbar puncture, even if you have the exact Venn diagram of high-leak-risk characteristics.
I’m sure it has nothing to do with the female predominance or the tendency to ignore symptoms in young women who “look healthy” or “are in great shape” ie they’re thin bc acknowledging them would require admitting that weight is not the sole determinant of health
Anyway. If you get a lumbar puncture (colloquially called a spinal tap), and you subsequently have an orthostatic headache that doesn’t clear up within about 24 hours, go back to the doctor and tell them you’re leaking. (Don’t word it like that, but you get it.)
Oh yes! the neuros I have talked to who did it, I always asked them if they repair the area afterward. The good ones do as a matter of course, so if you are going to get one, ask about what they do to repair the dura afterwards!!!
