I’ve only read about this symptom in Chiari I malformation and in small fiber polyneuropathy (SFN), which Annie Oaklander talked about at the NIH...
Pretty much every citation I could find on the CXA: https://www.me-pedia.org/wiki/Clivo-axial_angle There may, of course, be more. ↑ Jump up to:...
No one can diagnose or operate on themselves. The only practical harm I can see from this is a random person on Facebook tells a person they...
I’ve said this several times but I suspect it has gotten lost (sorry for the repeat photo but I think it is important to this conversation). I did...
In the US, there are Chiari experts at every major university hospital. If it were me, I would seek care from someone like this rather than the...
@Jeff_w @debored13 Interestingly, someone in our group just had a consult with a neurosurgeon who recognized that this patient had CCI based on...
Amazing, everyone. Thank you for your participation!!
I don’t know why people in the UK have to fly to Spain. I obviously did not. I will also repeat: this is just one of many diagnoses.
Absolutely! Most symptoms associated with ME are symptoms of other conditions. The same symptoms can have many different causes, even within the...
Oh...yes, but she also has some confusing ideas about CCF surgery. For example, that most people benefit initially from fusion surgery because...
And there is also a tendency in the EDS community to view hEDS in particular as a total explanation for people’s symptoms. I fight strongly...
It’s very common among people with EDS (which I am not saying you have) to be gymnasts or ballerinas when young, due to their gift of flexibility....
It’s also worth noting that Dr. Bolognese is talking about CCI/AAI. Obviously Chiari, cervical stenosis, subaxial instability, Eagle’s Syndrome,...
I’m not sure why this is odd. I and others with ME diagnoses have benefited quite a lot from Mestinon and antivirals, for example, which are...
That’s so fortunate. Mine diagnosed me with conversion disorder when I actually had craniocervical instability and tethered cord syndrome. So I...
Could you update this with the information from the largest metastudy @Michiel Tack? This one, 2274 surgeries, zero deaths:...
Because this is not snake oil, even if it “feels” like it is. I am not offended—was just hoping for some substantive engagement with the recent...
PS—neurologists in general are very bad at diagnosing these conditions. I do not know why. I think they tend to treat conditions that can be...
This is part of what is hard. Pages of explanation then, “feels like snake oil.” People have been doing this surgery since the 1960s and in EDS,...
This sounds right. Although the head is about 10 pounds.
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