Griff, yes, from this post of Dr. Sclafani's:
from IVUS i have noted that the vein wall is not narrowed at all. The valve elements INSIDE the vein are malformed and this malformation leads to stenosis because the valves that do not open, they may be stuck to each other, or may be fused to each other. That said, i have been focused on trying to treat the valvular malformations with a balloon that does not dilate the normal vein. So I measure the vein diameter and use balloons that do not exceed that diameter.
Its only been a few weeks so i cannot tell you that this works yet.
For patients with valve malformations, the vein itself may be healthy and thus need caution and preserving when attempting to treat the bad valve....
Since you are young, then the diagnosis would not be atherosclerosis. It looks like fibromuscular dysnplasia. but since you say you have hypermobility syndrome, the findings are consistent with ehlers danlos syndrome of the carotid artery.
it is possible to have microinfarcts of the brain that can give white matter lesions and that might lead one to a diagnosis of MS when EDS should be strongly considered.
Of course, i cannot give you particular advice because i know so little of your case. If you were my patient, I would get a proper CCSVI ultrasound to satisfy yourself that you do not have CCSVI.
if i were you, i would consult with a vascular specialist to clarify whether the diagnosis was actually EDS and then i would review with my diagnosing neurologist the clinical evidence.Since MS is a diagnosis of exclusion, you might not have MS at all.
what falls through the cracks!
Perkele, did you catch this? It seems significant!