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...
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...
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...
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...
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...
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...
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...
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...
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...
FWIW the reason I found this so interesting is because P4HA1 not only encodes for a part of procollagen-proline dioxygenase, which catalyzes the...
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...
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...
So interesting. I didn’t realize Stugeron was cinnarizine. Cinnarizine is also an antihistamine and a calcium channel blocker. There’s a whole...
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...
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...
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...
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