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I am not sure. @Hip would know this. I believe about 60% of patients who consult with Dr. Bolognese are diagnosed with CCI, but I know not everyone with CCI is offered surgery. He appears to have a cutoff where if you are not sufficiently symptomatic, it will not be offered. And of course, even...

He is not one of only two in the world. There are two in Europe plus a third surgeon who someone was able to convince to do surgery (she passed his criteria, he was just surprised that she was unstable given the absence of physical trauma). A fourth will start doing surgery in a different...

And I do not take this for granted, not at all. This is a problem we (on other fora) have been observing and discussing for months. I am very aware of the hurdles. I just know the family is fighting and that Jenny's story is still being written.

Most members of the medical profession who have no dealing with ME/CFS patients also don’t think ME/CFS exists. I am not sure this should be the standard by which we judge whether a concept or observation is valid, especially when the profession has proved by and large so grossly incapable of...

I have no idea. Maybe you should ask him.

I really cannot offer blanket or individual advice regarding whether someone should have surgery. Jenny believed her life was at risk and implied her doctors did, too. People’s circumstances vary so widely. Every situation is different and the balancing of risk/reward, an individual, contextual...

Because there are a lot of people who meet ME criteria and/or were diagnosed by an expert ME/CFS clinicians, who are a part of our community, and who have the trifecta. You may say these are not “true ME” patients but it does explain why a lot of people are suddenly getting multiple diagnoses...

Well, if that is the case I am still left confused. Given that the “trifecta” of EDS/POTS/MCAS is pretty well-established in clinical EDS land and given that the “neurosurgical complications” are also pretty well-established, it is not uncommon to have multiple diagnoses, conditional on having...

It is really important to remember that this “fad” is old news (15-20 years old) in the EDS community. Moreover, neurosurgeons have been doing fusions for craniocervical instability since the 1960s. Whatever one thinks about doing fusions in vEDS, the fact remains that Jenny also had a Chiari...

He is not in any FB groups I manage, as far as I am aware.

vEDS is not a designer diagnosis. It is a horrible, testable, rare genetic mutation that puts you at risk of sudden death and reduces your life expectancy to 48 years. CCI is not a designer diagnosis. It was the reason I had dysautonomia, intracranial hypertension and eventually, stopped...

FWIW the reason I found this so interesting is because P4HA1 not only encodes for a part of procollagen-proline dioxygenase, which catalyzes the formation of hydroxyproline (a collagen precursor), it also plays a role in the body’s switch from aerobic to anaerobic metabolism under conditions of...

Yes and no. There’s a whole line of inquiry around intracranial hypertension and ME/CFS, now being pursued by three different research groups in Europe, so in that sense this is all relevant. In addition to which, this story/thread was motivated by the experience of an ME/CFS patient. My...

It’s an old drug and not a front line treatment, but everything I see re: cinnarizine and TBI is that it’s used to increase cerebral blood flow.

It could still very well be relevant. If you have transverse sinus stenosis for example (TSS), which is much better studied than jugular vein stenosis, at the margins, wouldn’t someone with a coagulation disorder be more likely to have intracranial hypertension as a result? In other words, the...

So interesting. I didn’t realize Stugeron was cinnarizine. Cinnarizine is also an antihistamine and a calcium channel blocker. There’s a whole discussion on PR about its possible effects on symptoms in relation to this conversation: https://www.me-pedia.org/wiki/Neural_strain Specifically...

I have never heard of this. Is there anything published or is this described anywhere?

We have no idea how to tell if someone has ME/CFS, other than clinicians judging whether they have the disease based on the patient’s history and a set of criteria. That is the situation we are in. I don’t have this person’s full clinical history or anything close to it, but pretty much...

Very long talk by Petra Klinge at Brown University. She is the leading neurosurgeon for tethered cord syndrome in the US in EDS patients. For anyone interested, she describes symptoms, diagnosis, types of tethered cord, including the ‘tight filum’ variety that people with EDS tend to have. She...

With respect to the tethered cord symptoms I described, I am not really sure what you are looking for. There are 5000+ articles that mention tethered cord syndrome. These symptoms appear all over that literature, as well as on the websites of formal medical bodies, on websites of hospitals. I...