Thread by @jenbrea

If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families

– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch

– we would understand the relationships between #MECFS #EDS #MCAS #POTS #Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists

– patients with dysautonomia and neurological symptoms would get referred to one of hundreds of neurosurgeons skilled at ddx’ing #Chiari, #CCI/#AAI, #TC, #IIH, #CSF leaks, vascular syndromes like Eagle’s and other “#MEspine” etc diagnoses yet unknown/undiscovered

– we would remember that neuro-imaging is still in its infancy and the way we treat these patients, deeply immoral
– this would all be paid for by society because, Rawls and because it’s far, far “cheaper” than the status quo.

I don’t have a magic wand. I wish for a broad coalition of organizations, clinicians and researchers interested and committed to getting us there. Everyone we need exists. They just need to know each other, read each other’s work, and decide all this is worth it. #MEspine