Oh lordie, this is all so complicated that there is no easy way to explain except with the use of what some might consider gross medical visuals.
I continued to get worse and worse after being treated twice by an otological neurologist who changed my diagnosis to BPPV, which made no sense to me AT ALL when I found out they were treating my right ear, when it was my left ear that was symptomatic and VNG test-failing. After my gagging and choking got so bad that I could no longer eat solid food, I sent a message to the neuro to ask him to look at my MRI to see if I might have a Chiari malformation because it would explain every unsolved-mystery symptom I've been chasing for years.
To make a longer story shorter, he didn't respond so I taught myself how to read brain MRIs and how to identify cerebellar tonsilar ectopia, which is pretty much synonomous with Chiari. So, guess what I found. Yepper.
I went to my ENT with axial shots of my cerebellum hernaiting into my foramen magnum, taking up more space than my medulla, which is the only thing that should have been in there. (No wonder it's not very happy.) I told him "this looks like tonsilar ectopia to me but tell me if I'm mistaken".
He verified that I was correct ..and that he was incredibly embarassed that I'd seen all these specialists at Stanford but had to diagnose myself. I resisted the urge to say no shit.
I don't have the right MRI to technically label it "chiari" which I knew because there is no sagital view. You can see the spinal canal circled in red and the medulla labeled M and cerebellum intrusion C in this creepy MRI screenshot I marked up for your educational endeavor.
Now here's where it get's really complicated but since the only people who'll read this will either be googling for information about Chiari malformation and appriciate the detail; or the brave few who still check in on my non-posting ass and they're used to my excruiatingly detailed blatherings.
The term "chiari malformation" means a lot of different things to different doctors and traditionally there were four different recognized types of Chiari I-IV; specialists now also recognize Chiari 0 and Chiari 1.5. Almost no one who is not a sub-specialist neurologist even understands this so people who are not me go years and years being diagnosed with all kinds of things before they finally, sometimes coincidentally, get diagnosed correctly. I know more than many doctors about this stuff now because I've spent hours researching, reading the latest publications--blinding myself with science.
And, there's more! Chiari malformation would mean something else entirely to a radiologist--something that includes three different measurements of your brain/skull. Uh huh.
So, back to me-- I clearly have tonsilar ectopia--my cerebellum has herniated into my spinal column (see pic areas marked "C", M is medulla). The cerebellar tonsils are taking up more of the space than the brainstem, certainly causing some level of compression of the brainstem and cranial nerves in that proximity, and also likely causing hydrostatic pressure of cerebrospinal fluid.
So, I'm at least marginally fucked.
In other news, Jesus and I have broken up. He says he loves me but he never seems to be around when I need him. He's too much like all my bad boyfriends. It's starting to creep me out.
Also, he has a really mean daddy.