And they have symptoms strongly suggestive of specific neurological deficits And they have an abnormal clinical neurology exam And they have...
Yeah, but a lot more has been said and shared than this, both here and in my Medium posts. I think this gets back to @Hip ’s earlier point. Is...
Totally! I think that’s something we need to find out.
I don’t think that was the topic of Hip’s post... It depends on the context, Michiel. The context. Doctors recommend these things to patients who...
I did but something went wrong with my test so I need to redo it. I’ll only have a “post” test, so it doesn’t tell us much. There is at least one...
That there is no evidence that CCF is relevant to ME. Someone unnamed source at the NIH saying so doesn’t mean anything. It is self-evident. There...
Patients here in the US do travel identical distances to participate in studies at Harvard and Stanford, and to seek care. It will obviously...
I mean there is zero evidence. But that doesn’t really mean anything at this stage. And obviously, this surgery is relevant to CCI. The question...
Is this what you meant? Yes you are right that the consensus statement and these ligaments come out of an EDS context and are meant to describe...
Sorry I must have missed it! Let me look.
I had pretty dramatic ICP fluctuations, however this was related to my apnea (was the interpretation): https://link.medium.com/NQnApxNKL1 Other...
It’s because during surgery, they do intraoperative traction before fixation. If you don’t have symptom relief from traction when you are...
These surgeons are made of tougher stuff
How would you go about testing this?
What do you mean by “there is no actual vertical instabilty.” What gets worse with traction? The BDI?
This is pretty much what happens. If this doesn’t happen, I don’t think you are offered surgery ;) (We’ve heard stories in our group of people...
I mean, I think the Henderson diagrams indicate this pretty well (what happens in surgery). During traction, the abnormal measurements are meant...
My understanding is patients w/ cranial settling can often have very different measurements in traction v. out. The delta of their BDI (“dynamic...
I couldn’t help but laugh reading this as I am not sure what surgeon would ever do surgery based on a patient’s DIY radiology analysis!
Yeah exactly. I don’t think this is the most important question right now, though. What’s clear is that there are people in our community with...
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