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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 conference. I haven’t read about it in ME or in CCI, either. It lasted either for several days to a couple of weeks until thankfully, going away.

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: 1.0 1.1 Consensus statement. 2nd International CSF Dynamics Symposium, 2013. ↑ Jump up to: 2.0 2.1 2.2 Henderson, Fraser C.; Henderson, Fraser C...

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 *might* have something they don’t actually have and that person feels anxious until they go see a doctor. (Obviously, that’s not great if you have an...

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 have many symptoms that were “classic” for CCI going back to the beginning of my illness. However, I had many other symptoms besides. This is because...

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 neurologist down the road. I have seen what happens when doctors completely miss things. I have also seen what happens when people try to get surgery...

@Jeff_w @debored13 Interestingly, someone in our group just had a consult with a neurosurgeon who recognized that this patient had CCI based on the same measurements that we’ve all been talking about. They are in the US but had consulted with Gilete. They took Gilete’s report to a local NS who...

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 same person.

Oh...yes, but she also has some confusing ideas about CCF surgery. For example, that most people benefit initially from fusion surgery because they develop spinal fluid leaks during their surgeries, which relieves intracranial hypertension. (Spinal fluid leaks generally cause horrible symptoms...

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 against this because, as I am sure others have pointed out, there are many with this same phenotype who are perfectly healthy and not chronically ill at...

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. I think that is very much Dr. Bolognese’s point: that flexibility/hypermobility and instability of a joint are not the same thing. People with EDS...

It’s also worth noting that Dr. Bolognese is talking about CCI/AAI. Obviously Chiari, cervical stenosis, subaxial instability, Eagle’s Syndrome, spinal fluid leaks all present differently but can also have overlapping symptoms.

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 generally not available in the UK for people with ME diagnoses. (Neither of these are, by the way, generic treatments for ME, either.) So whether it’s...

That’s so fortunate. Mine diagnosed me with conversion disorder when I actually had craniocervical instability and tethered cord syndrome. So I walked home, collapsed and was bedridden for the next several months. Obviously, if you did have a spine condition you would want to be referred to a...

Could you update this with the information from the largest metastudy @Michiel Tack? This one, 2274 surgeries, zero deaths: https://academic.oup.com/neurosurgery/article-abstract/67/5/1396/2563905?redirectedFrom=fulltext You might also note in the n=779 study you quote that 81.58% of...

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 posts. Edit: When I was here in May, so much substantive engagement was ignored or summarily dismissed, so I am sorry if I had a hair trigger reaction...

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 managed with medications, and so are much more focused on MS and Parkinson’s. From what I’ve seen, you need to work hard with your neurologist or skip them...

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, for twenty years. I understand that most of the people commenting on this thread are in the UK or Europe and the idea of a private doctor is hard...

This sounds right. Although the head is about 10 pounds.