The venous and vascular doctors looking at CCSVI describe these lesions as truncular venous malformations, which form in the womb. Like all venous malformations, these grow with the body, and worsen with age. Disturbed blood flow created by venous malformations also makes them worse. It's all in Dr. Lee's paper-- I'll link it and recommend it yet again.
http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf
The truncular venous malformation (VM) represents an embryologically defective vein where developmental arrest has occurred during the vascular trunk formation period in the ‘later stage’ of the embryonic development. A relatively simple truncular VM lesion such as a venous web at the hepatic venous outlet causes portal hypertension giv- ing a profound damage/impact to the liver. A similar condition involving the head and neck venous system may cause chronic cerebrospinal venous insufficiency (CCSVI) and may be involved in the development or exacerbation of multiple sclerosis.
It is quite possible that a venous malformation would worsen with age and length of disease, creating worse CCSVI. Dr. Lee likens it to Budd Chiari, which takes decades to manifest as liver disease, although the venous malformations are congenital. The malformations included webs, stenotic veins, and intraluminal defects. It was very illuminating hearing Dr. Lee discuss this in Bologna in '09.
From the Fondazione Hilarescere press release after the Bologna conference:
1) What is the origin of the extracranial cerebral vein stenoses which characterize CCSVI?
Scientists answered this question from different perspectives: Professor Byung B. Lee, Georgetown University School of Medicine di Washington DC, showed that the malformations found in CCSVI are congenital truncular malformations which therefore certainly precede the development of Multiple Sclerosis. For this reason they cannot be regarded as a consequence of Multiple Sclerosis. Prof. Lee showed in which phases of the venous system development the malformations observed in CCSVI may appear. Byung B. Lee is the Chairman of the World Consensus Conference which gathers vascular experts from 47 countries and recently approved a scientific update on venous malformations in Montecarlo. (1)
Professor Giulio Gabbiani, Centre Médical Universitaire di Ginevra, demonstrated that there are no auto-immune phenomena in diseased veins thus excluding that the malformations found in CCSVI result from Multiple Sclerosis. He showed the results of a study which provides a histologic comparison between the walls of the veins affected by CCSVI-MS and those of normal subjects. Furthermore, at molecular level, CCSVI veins are structurally different from those of the control subjects, thus confirming the approach of the Montecarlo Consensus Conference. Prof. Gabbiani is one of the most important world experts in microscopic vessel wall morphology. (2)
It's not about stenosis...once again, "it's not architecture, it's flow"--Dr. Paolo Zamboni. The other doctors are looking at the wrong thing.
The only opinions that matter are those of the scientists capable of studying and understanding vms and those who know what to look for...Dr. Lee has spent his entire career looking at venous malformations. Dr. Gabbiani looked at the jugular vein tissue and compared it to normals. I heard them both speak...I'm going with them.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS