Fact or fiction: Chronic cerebro-spinal insufficiency

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Fact or fiction: Chronic cerebro-spinal insufficiency

Post by Cece » Fri Apr 27, 2012 10:09 pm

With a title like that, we know where this one's going...

http://www.sciencedirect.com/science/ar ... 8X1200006X

Ultrasound investigation of intracranial and cervical veins is highly operator dependent owing to the wide anatomic and physiological variability of these vessels. Therefore a study of cerebral venous drainage requires very experienced neurosonographers, but most importantly, blinding algorithms are mandatory in assessing MS patients especially during venographic verification of ultrasound findings; these were completely omitted in Zamboni's studies. To this day, a scientifically sound validation of each of the five criteria proposed by Zamboni for the diagnosis of CCSVI is missing, not to mention their combined application. Concurrently, there is growing evidence which rejects the role of CCSVI in the pathogenesis of MS and which suggests that the proposed CCSVI criteria are questionable due to miscitation, manipulation of known data and methodological flaws. Thus, any potentially harmful interventional treatment such as transluminal angioplasty and/or stenting should be strongly discouraged, not only for the lack of any evidence, but also for the risk of serious peri-procedural complications.

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Re: Fact or fiction: Chronic cerebro-spinal insufficiency

Post by 1eye » Sat Apr 28, 2012 11:05 am

I think I understand Dr. Zamboni's criteria, and they are not arbitrary. They have been discussed by scientists, and modifications adopted. I suggest that, by this time, any careful examiner will have seen ample evidence and explanation, not to write unfounded drivel. People who choose to ignore the accumulation of it over the past two years are beyond help.

There have been several studies, some large, which have corroborated Dr. Zamboni's results in different ways, and many logical and independent explanations for a variety of related evidence. Seek and you shall find.

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Re: Fact or fiction: Chronic cerebro-spinal insufficiency

Post by AMcG » Thu May 03, 2012 4:04 pm

I think we have to accept the review as largely fair comment. He has cited a lot of research to support his case. Of course as they all do he does overstep the mark. What he says about the limitations of sonography and the various standards for blood flow which Zamboni has ignored is OK but it simply shows that sonography and the five criteria that Zamboni first derived are not good enough which is something we all know already. I wonder how many Drs who are treating rely on the original five criteria or sonography nowadays anyway.

But he then goes on to use data obtained by exactly those methods to ‘demonstrate’ that normals and PWMS do not significantly differ and therefore dismiss CCSVI. That is not very clever. If those procedures are not good enough to prove CCSVI exists then they are not good enough to disprove it either.

I think it is fair enough to say that many people have failed to find evidence of CCSVI and that methods exist which can more accurately measure blood flow and volume. But he doesn’t stop there. He seems at pains to attack every part of Zamboni’s 2009 report (and does a fair job of it) but again Zamboni himself has done the same. Zamboni quite rightly pointed out the limitations of his 2009 paper and invited the criticism which ensued. He wants the research to progress so he welcomes the criticism. I dare say he would prefer open-minded comments but that is not always the way science proceeds..

Unfortunately none of this research is worth very much if there is no valid, reliable and repeatable way of measuring CCSVI which they all can use. These people always want to have their cake and eat it: they say basically ‘There is no reliable way of measuring it and even if you do measure it you still can’t find it.” If the first part of that statement is true then the second part is meaningless.”

But the central question that Zamboni posed remains unaddressed “is it possible for chronic drainage problems to occur in relation to the brain?” If you think it isn’t then how can you prove that? If you think it is then what measures are appropriate to find it? Catheter venography has been considered as the gold standard for some time but it now seems less than adequate. Catheter venography plus IVUS is probably the front runner at the moment but for how long?

Of course all this begs the far more important question of what is happening in treatment. Why do people improve? How can we understand and improve the treatment? I try to be open-minded but I am afraid I lose my respect for people who publish reports like this which end by saying that treatment should be strongly discouraged. What possible grounds does he think he has for that view? He says he doesn't see any reason to think CCSVI exists so we should not treat it. So we should ignore all the IRs who find it and treat it ? Sounds like Nelson putting his telescope to his blind eye to me.

We now have evidence from people who have been treated four years ago and are still maintaining their improvements. I do not believe these people are lying or stupid or fooling themselves. I myself was declared symptom free by my Neuro two years after treatment. I did have some residual spasticity in my rib-cage and the backs of my legs but that has now gone. Just last week I realized the mild but the ever present feeling of dizziness I have had for over six years has disappeared. I am not yet sure that it is gone for good and I had got used to the idea it was going to be a constant companion. I was not expecting any further improvements but amazingly at the moment I now seem to be 100% normal. My point is no one could predict that that was going to happen neither me or my Neuro or the IR who treated me in Poland. Certainly not Mr Barracchini. Something happened for me for which I am very grateful but which I do not have an explanation for.

Scientists need to see that their research has limitations: inconclusive research aimed at addressing theoretical questions should not form the basis for treatment strategies. Priority needs to be given to the real world. If their science cannot prove or disprove something they should have the open-mindedness to admit their ignorance and not try to parade it as knowledge and certainly not base advice for treatment on it.

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