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Hope this is helpful,Byung B. Lee- Georgetown University School of Medicine, Washington-Embryology of the venous system and origin of truncular venous malformations
Dr. Lee began as a transplant surgeon and admitted that his first liver transplant was a disaster. He learned the hard way that the vena cava is not just a single trunk....and venous malformation was a most fearful thing, and a nightmare to a transplant surgeon.
"We doctors have a tendency to specialize in our narrow fields...but I want to appeal to all of us to take a bird’s eyeview. We need to look at the whole picture. We now understand the lower venous system, but it has taken us much too long to bring this knowledge all the way up to the neck and all the way to the junction of the superior vena cava.
Vascular malformations are from embryological defective vessels involved in the later stages of embriogenesis. CVM can develop anywhere in the vascular system as a birth defect. The vascular malformation is one of the CVMS which affects mainly the venous system. There is much we do not know, and we do not know how much we do not know."
Two classifications of venous malformations:
Extratruncular- this is formed by embryonic tissue remnant which carries a risk of growth, because it is mesynchymal. When stimulated by hormones, pregnancy, etc, it can reactivate and grow.
Truncular VM- this is formed as part of the later stage of embryonic development. This form does not have mesencymal cell characteristics. Truncular lesions present as a fetal remnant- such as sciatic veins or superior vena cava malformations
We cannot stop investigating at the neck in CCSVI! We need to investigate all the way down to the superior vena cava.
Truncular venous malformation lesions are obstructive of dilated lesions: such as we see in IJV aneurisms or iliac vein stenosis. They are more serious to direct involvement of the venous system, and will bring about hemodynamic issues. Why has the jugular been ignored previously? Chronic venous congestions leaves more damage along its related organ or tissue. Venous congestion of the IJV is related to ischemia.
The cardio system is the first system to develop in an embryo. At 15-16 days from gestation, there is a primitive vascular system. Veins are so important, that God made them in pairs- to overcome any defects. They are more important than arteries.
The IJVs are the dominant deep vein to drain the brain. Below the diaphragm, the veins converge, and problems can also arise there. Dr. Lee couldn't repair the IVC after taking the liver out of his patient, because of stenosied veins. Often, the liver is the victim - such as Budd Chiari syndrome.
Dr. Frohman asks Dr. Lee-
Why the latency for onset of MS compared to other VM disease?
Dr. Lee states that some cases of Budd Chiari are diagnosed at age 30, not all are pediatric. It depends on the level of vena cava obstruction. It is too late to repair by the time they do a liver biopsy. The venous system is not like the atrial system- extra pressure makes it very vulnerable. Acute venous hypertension is easy to find and obvious, but this is not the issue...it is the slower progress such as CCSVI...what we do not know is what we do not know.
Another doctor asks-
Is there any evidence in the literature if there are potential environmental influences on the mother which might affect VMs?
Dr Lee states that the current embryology knowledge we use today was established in 1890-1920s. There is no known connection to venous system and environmental influences....yet. There needs to be more research.
VMs show up and most of them come back. Because certain malformations have those mesynchymal cells, they reactivate in tuncular venous malformations.
Neonatal surgery is finally catching up to the pace, and in 5-10 years, a neonatal surgeon may understand the implication of VMs.
Dr. Frohman asks: Looking at Budd Chiari in the hepatic system, is there anything analogous to MS?
Dr. Lee....yes, Budd Chiari shows up primarily in Caucasians. This is part of the reason Dr. Lee believes the evidence points towards a congenital cause of venous congestion.
I decided to look around and here's what I found. Dr Zamboni has described the doppler ultrasoound protocols in great detail in at least two published journal articles. Here are links to them:Please show me that Zamboni is trying to be part of the solution and point out to me where he has posted the protocols prominently
I've never even considered it to be a stretch of the imagination. I mean, at first I didn't consider it at all, I am so fed up with the illness and so jaded by the various cures over the years, that I didn't allow myself - probably because I have a medical phobia and the idea of cardiac catheters makes me feel ill. But once I allowed myself to do so, it made perfect sense, not only because it fills a vacuum, but it seems logical.Lyon wrote:I guess I've never heard it explained that way.Cece wrote: It is serious damage...that only shows up 30 years into the disease process, on average. Chronic, not acute.
If true, it makes no obvious sense to me.
Something that is thought might cause a disease doesn't exist until 30 years into the disease process?
Just to be safe? Head to the lifeboats NOW!
Now folks this is coming from a layman when it comes to the vascular system but for the devastation this disease causes should it really be that hard to find the abnormalities? I mean if a blockage causes blindness, paralysis, etc. should it be that difficult to locate? I mean we are talking some serious damage to the nervous system not your run of the mill hand numbness.
That seems to be forgotten by most (including many on this thread). How many times have people had a Doppler, MRV, Trans or extracranial with no sign of CCSVI and then, IMAGINE THAT ! during the venogram they found stenosis and reflux.Really both ultrasound and mri only hinted at my blockages. It was venography that did the job. That's why it's a worry that most of the studies coming up don't use it. Just UBC.
You can find controls willing to do pretty much anything for money.Lyon wrote:I'm with you but the venogram is considered invasive and I guess there's some ethics problems involved with using it on controls. I don't know, maybe it's going to be hard finding controls willing to undergo something like a venogram?BadCopy wrote:Why do we sit and argue about MRV Doppler protocol when I think a lot of us realized long ago that to really be sure you have to do the Venogram. We all make are own decisions, but I won't be ok with the findings unless it was from a Venogram.
Oh yes, for sure. An ultrasound needs one person. At least three for catheter venography. Doctor, nurse, anaesthetist. Anaesthetist's nurse too? Then there's the catheter itself, the dye, quite an expense all in all I should think.Lyon wrote:For some reason I hadn't even considered that you can/would pay controls, but you're right.L wrote: You can find controls willing to do pretty much anything for money.
OK then, I have to wonder about the cost of catheter venography. Not that there is any realistic substitute but I wonder if it's ridiculously more expensive than the other tests?
Thinking about it, if I were designing the study I'd sedate the patient. Midazolam is an amnesiac. Just an incision, bandage it up and there you have a patient who doesn't know what's happened to them.Lyon wrote:For some reason I hadn't even considered that you can/would pay controls, but you're right.L wrote: You can find controls willing to do pretty much anything for money.
OK then, I have to wonder about the cost of catheter venography. Not that there is any realistic substitute but I wonder if it's ridiculously more expensive than the other tests?