Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

cheerleader · Post by **cheerleader** » Fri Mar 13, 2009 4:29 pm

Marie-Look at the drawing for venous insufficiency class D. It's the second to last page on Zamboni's paper. It shows blockage of the azygos vein (where the red xs are located) leading to VV reflux, without any involvement of the jugular. ( If I was Cure, I could copy it here...but I'm not a pithy australian guy, so no luck.) The repair would not have to be in the VV! It would be much easier in the azygos. Hope your doc hears back from Zamboni.
AC

mrhodes40 · Post by **mrhodes40** » Fri Mar 13, 2009 5:02 pm

Hey Cheer, I'm glad your head is working.

Yes, I was looking at this as well and I agree it is pattern D type most likely and note that the other part of that pattern is in the DCV's which we did not do.........

Type D (18%): In this pattern the azygous system was constantly affected
in various segments (red crosses), resulting in a forced venous drainage
towards the intrarachidian circles in an upward direction (red arrows)
(Fig.3). The vertebral veins appeared to be refluent, and the intracranial
collateral circles seek to gain the IJVs, as confirmed by reflux detection in
DCVs in 90% of cases. At times, the IJVs were also affected (6 cases,
50%), causing an additional obstruction in these patients.
Figure

That's a better deal for hopeful repair, the azygous is probably fixable. I bet we end up sending me to DCV testing....
marie

CureOrBust · Post by **CureOrBust** » Fri Mar 13, 2009 6:36 pm

hope to catch you before you sleep. Marie, I think your vascular guys would be VERY interested in this manual:

http://www.scribd.com/doc/8573215/Handb ... Ultrasound

mrhodes40 · Post by **mrhodes40** » Sat Mar 14, 2009 10:06 am

Thanks Cure, I got it today. They are really a nice team. I believe that if we end up needing DCV's that they are going to be done at the stroke place, but if they decide to do a lot more of it, like if they go for a study of some kind, then the sonographer might need that, thanks!

I really dont know what is next. I get the feeling the initial thing was kind of punted to the doppler guy to see if he could get anything, and once he did, then the decision was OK now I'll actually dig in and really try to read and understand this.

gibbledygook · Post by **gibbledygook** » Wed Mar 18, 2009 10:27 am

I have a question on the Schelling paper. On page 81 and at the bottom of the page, he writes "And there was one further significant finding: The maximal distension of plaque veins immediately downstream to their thrombotic obstructions..." Does this mean that the veins are distended downstream of the stenoses? Surely the bloodflow is obstructed and then flows back upstream of the obstruction, causing the vein to distend upstream of the obstruction. After all the lesions are sited around the narrow parts of the vein and follow the course of the vein in a direction opposite to normal blood flow. ie upstream. As I imagine it the lesion is sited around the narrow and distended bits of the vein, that's certainly how it feels on the vasoactive herbs! Can anyone explain why the vein would be distended downstream of the obstruction?

mrhodes40 · Post by **mrhodes40** » Wed Mar 18, 2009 11:25 am

that whole section is about noting the forces involved with the venous hypertension, he is marking all the different evidence from pathology made by a number of authors over the --well, century really!--and collecting it all together to show that the pattern of venous hypertension has been there all along in the evidence we just didn't understand what it meant.

I think that we are supposed to determine from that that when the blood is forced through that tight space it blasts through as an energetic flow on the other side as well....thus it causes the distention downstream.

Schelling wrote 30 nearly years ago, his material is hypothetical and based on what was a new interpretation and understanding of the pathology at that time. In some cases his idea is different than what Zamboni is actually finding.

An example is that I showed type D pattern for reflux, that is associated with PPMS. But PPMS in schellings theory has something to do with CFS backflow and it is an odd theory to me, luckily not what Zamboni has postulated for possible repair of pattern D--the backup is starting in the azygous and lumbar veins he is finding.

GG, you getting some dopplers done?

gibbledygook · Post by **gibbledygook** » Thu Mar 19, 2009 12:31 am

Marie, I have met two "consultants" in London, one a vascular specialist, one a neurologist. Neither were in the slightest bit interested in helping me get the scans done and did everything to put me off the whole idea; both couldn't bear the idea of a patient-led discussion. This was very annoying as the vascular specialist, Mr Baskerville, is said to be one of the best in the UK. I think I'd be better off trying in another country, where they might be keener on the money...maybe South Africa or China. I'm really not at all sure where to take my discussion next. I think I will wait for Zamboni's presentation and then see if any interest has arisen from his preliminary findings. Although that might really be once he publishes next year.

Ps, thanks for explaining how the blood must power it's way through the obstruction and then distend the other side. Mmm. The trouble with the vasoactive herbs is that they dilate the already distended or constrict the already constricted so that a chemical solution to the problem is never going to work.

mrhodes40 · Post by **mrhodes40** » Thu Mar 19, 2009 7:52 am

Neither were in the slightest bit interested

What do you say to that? I guess it is lucky that they have solved the MS mystery and need not consider anything else.

For others reading this, the following is how I got someone to agree to do my dopplers:

I first looked online for a professor from my nearest big university U of Washington and found one who'd published in the vascular field. I had several possibilities. I picked, believe it or not, the friendliest looking one and requested permission to send the literature, meaning Zamboni's papers. When I got a "yes" then I sent the papers with the request for an appointment IF he thought it interesting. If I'd have gotten a no I'd have moved to the next guy in my list of possible UW vascular professors.

In one week he called and was excited to be a go; I know now that what he did was review it with his colleague and sonographer then asked the sonographer to really dig into the technial details and see if they could do the dopplers in the office before he really dug into the theory. He wanted to see IF we got reflux, once we did he basially committed to it and said I am excited about this and I will see it through with you but let me email Zamboni and see what he says about your dopplers and study it deeply so I understand it well. I'll call you in a couple of weeks when I have a plan what to do next....." I am now waiting that call.

I believe Cheer also sent research and waited many weeks for the doc to review the idea before she heard back too.

cheerleader · Post by **cheerleader** » Thu Mar 19, 2009 8:27 am

Terrific advice, Marie-
Exactly what we did...I researched vascular docs at our area universities, (specifically those with cerebral bloodflow testing facilities/stroke centers) and sent out introductory e-mails with a link to Zamboni's research.

I eventually heard back from 2 out of the 4 e-mails sent. Both were the busy head doctors at their university vascular department (award winning/published/respected) and both were intrigued with the research and possibilities. One even called me at home to discuss the testing. He is the one we chose, and is very excited. Since Jeff has bad headaches, we will be able to have the doppler testing put through our insurance, and any further venography or endovascular procedures will be covered as well.

We're booked for the end of April in northern California. (PM me or Marie if you live in our areas)

A university vascular dept. will be interested in this from a research angle, more so than an established vascular doctor who already has a thriving practice. And neuros will not be interested.
AC

cheerleader · Post by **cheerleader** » Thu Mar 19, 2009 9:02 am

New Response on Zamboni's CCVI research-
May have to buy it to read Dr. Franceschi's thoughts....

The unsolved puzzle of multiple sclerosis and venous function

Claude Franceschi
Correspondence to:
Dr Claude Franceschi, Vascular Laboratories of Hospitals Saint Joseph and Pitié-Salpétrière, Paris, France; claude.franceschi@wanadoo.fr

Venous function is a central mechanism of regulation of cell and tissue biology, although there is a lack of study on its influence in the central nervous system (CNS).1 The paper by Zamboni and co-workers (see page 392) illustrates a vascular picture that has not previously been described, correctly defined as chronic cerebrospinal venous insufficiency (CCSVI), strongly associated with multiple sclerosis (MS).2 The picture is characterised by significant obstacles of the main extracranial cerebrospinal veins, the jugular and azygous system, and by the opening of substitute circles. When the venous flow is deviated into collaterals to bypass an obstacle, there exists what is called a vicarious shunt.3 This type of shunt is desirable because it bypasses blocked veins and thereby reduces resistance to drainage. It flows permanently under the effects of distal cardiac residual pressure and proximal thoracoabdominal aspiration. However, the expected time of venous outflow is longer, as . . . [Full text of this article]

http://jnnp.bmj.com/cgi/content/extract/80/4/358

mrhodes40 · Post by **mrhodes40** » Thu Mar 19, 2009 9:30 am

GG, How's your French????

neuros will not be interested

Let's be honest: If you are prescribing drugs that you KNOW cause heart disease and immune deficiency diseases, what does your mental point of view HAVE to be?

You must, absolutely MUST, have totally resolved in your own mind that MS *IS* autoimmune in spite of the fact that it is still not proven and that the ill caused by these drugs is less than the alternative. No one would knowingly give someone a drug like that unless they had come to that certainty in their own mind, Doctors in general care about people.

They don't even realize they are missing something.

mrhodes40 · Post by **mrhodes40** » Thu Mar 19, 2009 10:43 am

Oh, good Cheer! It was 20 bucks. I did get it; it is positive on the idea of MS being caused by this mechanism. I sent it to my vascular guy. notably the main offering by that author was the mean transit times are increased in MS and how that know fact supports the idea....we were on that a couple pages back ..........

see the page CLICK HERE

GG again the french guy that wrote that response to the Zamboni paper with the complimentary point of view is pretty close? Isn't it a small trip from UK to Fance? It's worth a shot maybe

sou · Post by **sou** » Fri Mar 20, 2009 4:05 am

You must, absolutely MUST, have totally resolved in your own mind that MS *IS* autoimmune in spite of the fact that it is still not proven and that the ill caused by these drugs is less than the alternative.

... and their effectiveness is equal to placebo, according to Cohrane. Not to mention the inconvenience of injecting, having to keep a refrigerator in your pocket when travelling, nasty side effects after the injection, the 10000 times the cost of placebo and the creepy smile of the nurse that you have chosen the right drug.

Having the effectiveness in mind, which drug wouldn't be the right choice? Among these, I choose placebo. It is effective, inexpensive, it is my choice whether it should be injectable or not and has literally no side effects at all.

sou

patientx · Post by **patientx** » Fri Mar 20, 2009 6:24 am

You must, absolutely MUST, have totally resolved in your own mind that MS *IS* autoimmune in spite of the fact that it is still not proven and that the ill caused by these drugs is less than the alternative. No one would knowingly give someone a drug like that unless they had come to that certainty in their own mind, Doctors in general care about people.

Sorry this is off-topic from CCVI, but, Marie, I think you're being too easy on doctors. At least the ones I've seen don't even think about this. "Everyone" says MS is autoimmune, so that's what it is. End of story. The FDA says the CRABs are approved for treating MS, so that's what they prescribe. No questions asked.

I know this is a pretty cynical point of view, and is not true of all neurologists. But this has been my experience with the neuro's I've seen. Now, I should cut some slack for the general neuro who diagnosed me; I guess he can't be expected to be an expert on MS. But even the MS specialists I've seen pretty much just followed the company line.

Loobie · Post by **Loobie** » Fri Mar 20, 2009 7:02 am

I'm sending the 'stuff' to Dr. William Snead, Ohio State University Medical Center, Department of Vascular surgery. I have a call into him this morning to see if he will consider this. I don't even plan on involving my neurologist until after it's done. He's very open minded and all and would never say "don't do this", but it really is happening outside his care, so I don't really care if he wants me to do it or not!

I checked for about 4 hours yesterday for local, university based doctors, and this looked the best, so keep your fingers crossed!