If someone has brainstem compression with unambiguous symptoms such as paralysis and/or the brainstem is compressed on MRI, or the spine is not lining up correctly and the brainstem is about to be compressed, or moves excessively on X-rays taken when flexed or extended, then there is no real doubt as to the diagnosis.
What about all these EDS patients with "symptoms of brainstem compression" like POTS, brain fog, sleep disturbance, vomiting, dizziness, etc.? If you MRI them, they don't have brainstem compression. The spine lines up correctly, If you do X-rays, then it doesn't move around much on flexion and extension. But surely, they must have some intermittent compression causing all these symptoms. We just aren't seeing it. We know they are hypermobile, so it stands to reason that there is intermittent compression; so what is needed is to stabilise the spine. That is the argument put forward by 3 neurosurgeons: 1 in Barcelona, 1 in New York and 1 in Maryland.
These surgeons have tried to come up with a variety of diagnostic criteria. The Maryland surgeon came up with some "consensus" criteria (but the Barcelona and New York ones don't use it, so there really is no consensus). These criteria attempt to diagnose brainstem compression on MRI, not by looking at the brainstem and whether it is compressed or not, but by measuring various angles and distances in the spine using upright MRI. There are lots of problems with these measures, including evidence of hopeless repeatbility (a differerent doc looking at the same image can produce a completely different measurement), sensitivity to errors and posture, and poorly (or possibly incorrectly) defined normal/abnormal ranges. There is also the slightly dubious explanation of why the compression isn't visible - it's not actually compression, it's stretching!
Many surgeons looking at this, argue as follows: You're making a decision for surgery based on symptoms of POTS and brain fog, and a niche test (upright MRI) which few doctors have access to, looking for imaging features which are unreliable and may be normal.
At least the Maryland guy has actually written down his criteria, and has published some results (albeit a survey of patients, asking for patient reported outcomes like "I think the surgery has improved my symptoms"), although the results are purely self-reported symptoms (no objective measures, like number of prescriptions, employment history, etc. or even a review of symptom diaries filled in before and after surgery). Doing this work privately, and treating people from around the world, the patients often don't come back for follow-up, so he never sees them again.
The New York guy, basically says that upright MRI is not very useful. The only way to diagnose the condition is to pin a halo traction frame to the skull, apply traction with weights and pulleys, and see if the symptoms resolve when the head is pulled up against gravity, ideally doing X-rays before and after to see if the spinal alignment changes. He used to do major surgery like on Tonia's pics, on the basis that in EDS, the connective tissue is abnormal and weak, so huge amounts of metal are needed to stabilise the spine, but he had "terrible" results. He now does an extremely minimal surgery, which apparently works much better. However, although he likes to talk about his "excellent" results, he has never given any numbers at any conference where he has been invited to speak. He has never published any written papers with results.
The Barcelona guy doesn't even go to the conferences, let alone write up what he does. He appears to use conventional MRI to decide, using measures based on rotating the head to the left and right (assessing rotational measures is just as much of a minefield as the various upright MRI measures). No one has any idea what his decision process is. By the looks of Tonia's pics, he's doing very extensive surgery.
The you have the radiologists at the upright MRI sites - they've got their own idea of how to diagnoses CCI in EDS, and it doesn't correspond to any of the surgeons, but they will do the measurements the surgeons ask for because the surgeon's don't believe their interpretation.
Now of course, one or more of these surgeons may be right. One has at least attempted to put together a reasoned argument for his stretching hypothesis, based on engineering software intended to measure stretching and distortion of mechanical components. However, the general consensus in the neurosurgical community (at least in Europe and the UK) is that the diagnostic criteria are too vague and too unreliable, there is no consensus on what type of surgery should be done, and there is no good quality outcome data to show whether the surgery is actually of benefit. There is a real risk that some of the people doing this work are being blinded by confirmation bias, because to an outsider, the quality of the science appears dire.
Okay sure. Makes sense now. 
40 seizures a day in an adult is "status epilepticus" enough to get the sweet Michael Jackson drug.
hopefully they won’t get some kind of vag dislocation 
