“Study” casts doubt on “CCSVI”
Posted by Colin Rose on February 11, 2010
More on Zivadinov`s press conference in the National Post. Preying on desperate people by recommending an expensive test with no proven utility is contrary to the Hippocratic Oath. Zivadinov should only be performing his occult art as part of a project funded by peer-reviewed research grants, if he can get one.
Read more: http://www.nationalpost.com/news/story.html?id=2548171&p=2#ixzz0fEiT9lX2
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Dr. Paul O’Connor, a neurologist at Toronto’s St. Michael’s Hospital, said he would advise against patients even getting tested.
“There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients,” he said. “If there is no treatment for this condition, there is no need to detect it.”
Both he and Dr. Freedman also suggested that Dr. Ziadinov may be in a conflict of interest, given that his Buffalo Neuroimaging Analysis Center is now offering neck scans to MS patients for fees of $4,500 to $6,000.
Panaceia or Hygeia 
notms said
Click to access Hamilton%20Michael%20Dake%27s%20talk.pdf
You look at those pics and tell me the there isn’t a problem and I will show you a doctor who doesn’t understand medicine.
avascularsonographer said
Notms,
To be fair, those MR images (the venograms) are only single slices. Those “stenoses” could easily be due to the jugular vein twisting in and out of the slice plane. Without the 2 or 3 images showing the slices in front, and behind, the given single MRI picture, you can’t tell if that’s a stenosis or not. It’s not even suggestive one way or the other – there’s simply not enough information to say.
And before anyone chimes in with “but it’s a reformat” [i.e. an image that is ‘straightened’ to show the entire artery in one flat image], no, it’s not. Have a closer look at it.
chrisoneeye said
Whatever those pictures are, they are 2D. They (or similar pictures shown on a fluoroscope, or even an echocardiogram, which is an ultrasound test, would be enough for a cardiac surgeon to go in for an angioplasty. I think they are enough for a balloon dilation.
CCSVI researchers are looking at 3D imaging techniques, as well as scanning for iron deposits.
The Buffalo study results were 55%. That means 55% of those MS patients tested *had* *severe* *stenosis*. So do I. I could feel the instrument on my neck and see the result in real time. The flow in my jugulars went down to almost nothing. This was measured (in the study) using both doppler ultrasound *and* MRI. I don’t imagine if they could see from other slices they would fake the results by saying that there were stenoses when there weren’t. I repeat I am convinced, and I think millions of other CCSVI sufferers are too. Did the phlebologists not all just agree that CCSVI is congenital and needs to be treated, regardless of MS?
Dr. Zivadinov is a neurologist, but I think many of us have gone off believing these guys. We are realizing that this is not so much a brain problem, but a vascular problem affecting the CNS, and we need a vascular surgeon. Anyway the full report will come out, and we can look at his results.
Much has been made of that 29% and the 62%. It was not a peer reviewed publication. Don’t believe everything you read in the news. The images this thread started about were from Dr. Dake at Stanford. I hope you realize who you are talking about.
avascularsonographer said
Chrisoneeye,
OK, your points in turn.
First off, the pictures I’m referring to (the MRI venogram images) are 2D pictures. They are a part of a multi-image set, which is how an MRI simulates a 3D information set. The MRI machine takes multiple 2D images, slicing steadily through the body, then assembles them into a 3D volume. It is *not* a native 3D scan. It is merely multiple 2D scans glued together. *This is important*.
Notms’ comment was that those images show something wrong, obviously wrong. In the case of the MR venograms, there’s not enough information to say this if you only show one slice, as the linked presentation does. You need the slices before and after (and preferably, 2 before and 2 after) to tell if that vein is truly narrowed, or if it’s just an artifact due to a tortuous vein. That was my assertion.
Second, your comment that “That means 55% of those MS patients tested *had* *severe* *stenosis*.”
Read the press release carefully. It merely states that 55% of MS patients have “narrowing of the extracranial veins”, which is (from a vascular diagnostic point of view, and remember I spend all day, every day at work diagnosing stenoses of the head and neck – I do ultrasounds in a busy stroke unit) not the same as saying “they have a stenosis”, let along “they have a severe stenosis.”
Stenosis is a diagnostically defined term. If you use it, you’re making a cast-iron call. Using the term “narrowing” has no diagnostic significance, in terms of the haemodynamics of a system being affected. The word “stenosis” is not used at all in the press release. I wonder why?
Zamboni et. al. uses the word “stenosis” all the time.
I don’t think it’s a good idea to comment on the third point, which is mostly regarding your own personal opinion about CCSVI. That’s all fine, everyone is entitled to an opinion. I’m just sticking to the science parts.
Your final paragraph says that because this wasn’t peer reviewed, the 62% (really 55% – you can’t use the percentage figure they give when they throw away the data that doesn’t neatly fit!) versus 25.9% figure is not really a big deal. This was a press release, voluntarily made, right? They must have some confidence in those figures to date. And if nearly 26% of your normal group has a finding, and 55% of your MS group, then you haven’t statistically got any proof that MS is inextricably linked to venous stenosis. All you’ve got is a trend.
Regarding your last sentence, yes, I do realise who I am talking about. And any scientist or doctor can be mistaken or wrong, no matter who they are. Good scientific method is there to sort out the supportable conclusions from the unsupportable, and based on the light info in the Buffalo press release, there’s still no scientifically provable support for “MS is inextricably linked to venous stenosis”, either as a cause, or as a result of it.
chrisoneeye said
Well, I guess we wait for the publication in a peer-reviewed journal, don’t we? Like the ones several of Dr. Zamboni’s papers are in.
If Dr. Dake deliberately left out slices which show no “narrowing” really exists (which I think was carefully defined in Dr. Zamboni’s paper, anyway), then he is guilty of more than just being wrong. The presumption of innocence, that Dr. Dake would have left included images that proved the narrowing was an illusion, if they were there, is a reasonable one. Anyway do these slides come directly from him? Don’t believe everything you read on an Internet blog.
I guess we’ll have to adopt a ‘wait and see’ on that one. But not to get tested is plain silly. The fact that you think there is a trend and not just a (possibly mis-typed) press release gives me even more confidence.
Anyway I think my opinions are known for what that’s worth. I release the term stenosis. I have what I would call “severe narrowing”. Really, the flow goes down to almost nothing, even though there is apparently moving blood on either side. This leaves the question of pressure and the question of direction. I hope these can be resolved by the Buffalo study as well, since jets of venous blood going into the brain can be very damaging.
So over half of MS patients and about 1/4 of normal patients have the venous narrowing. I don’t feel like a healthy control. I feel like an MS patient. So I have a better than 50% chance of having a narrowing. But I already *know* I have it, so that trend is just more evidence, which supports my anecdotal result.
I am in the 55%.
avascularsonographer said
I was hoping not to come across as saying anything about whoever created that presentation (can only assume based on how it’s presented to us). It’s true, there are venous stenoses out there. Hopefully once we have the final paper everyone can have their two bits worth regarding the criteria they’ve chosen to categorise “normal” versus “narrowed” or “stenosis.”
The thing that most leaves me scratching my head about the whole thing is this, though (and this has been my question since the beginning):
If you look at the vein anatomy of the neck and head, and you assume a faulty internal jugular vein, where does the pressure (i.e. blood supply) some from so that there *can* be reflux?.
Unless your head is below the level of your chest, with you basically more standing on your head than anything else, then I can’t see how you can get any blood to flow back up the jugular or vertebral veins!
I just don’t get it .
Colin Rose said
The most dramatic example of reflux of blood into the internal jugular veins occurs in tricuspid regurgitation (TR), a leaky tricuspid valve that allows blood to flow backwards from the right ventricle into the large veins. One can diagnose TR just by looking at the neck. No high tech Doppler required. There has never been a case of TR associated with MS. So what sort of “reflux” is Zamboni measuring with his special Doppler technique? He refuses to describe it in words so that the rest of the world can repeat his technique. He admits that there is no increase in jugular venous pressure such as is associated with TR. So Zamboni’s “reflux” is unmeasurable. It’s surreal.
chrisoneeye said
I am not arguing with one post here, I just wanted to say I object to the commonly bandied misconceptions about circulation. The difference between blood in the head and blood in the legs is gravity. The veins have a check valve in the neck to prevent blood going up. Try bending over and tying your shoes. That is when it works. You feel the pressure of your heart when your heart is pumping blood into your head and it isn’t going up as fast as it fell down. I don’t think all neck veins have this valve.
Your brain would die if the blood couldn’t go back down at all. Yeah, OK, you might turn purple too. But I don’t think anyone is saying it doesn’t drain at all. Just not enough from all the right places, fast enough to prevent iron deposition and autoimmunity.
It goes through several veins. There is not adequate circulation if enough blood doesn’t pass by wherever it’s going per unit of time to allow to get back to the lungs and get replenished with oxygen, or to avoid iron deposition and probably a lot more. Even the immune system wouldn’t work the same way if you spent all your time upside-down, since T-cells appear to migrate along the outside of blood vessels in the direction of the blood.
If we had constrictions (not blockages) in our necks we would not look like a picture of a sick leg, or die. We might have bad circulation in our brains, though.
Can all the medical experts and others with axes to grind stop bickering and start healing sick people?
Colin Rose said
I have no axe to grind. I have no ads on my blog. My goals are to avoid having MS patients getting depressed when Zamboni’s fantasy is finally shown to be such, to prevent money (some of which will be from my taxes) being spent on useless tests and treatments and to help my neurology collegues from being hounded by true believers in “CCSVI”.
Colin Rose said
The ONLY way IJV blockages could potentially cause brain patholgy is by increased upstream pressure and those pressures are normal in MS patients.
chrisoneeye said
So, do you agree that this theory has not been proven as fantasy? That it is currently not provable as a danger to anyone’s well-being or money?
If it would be a danger to a taxpayer’s money, they must have a pretty good health care system.
I think these problems could be, not a complete block of both jugulars (which, we may agree, would be deadly and make a mess), but narrowing, which could be in the arteries as well.
Couldn’t they cause brain pathology, even without a pressure differential between upstream and downstream of the narrowing, just by iron deposition? If there is less pressure from the heart, or an arterial narrowing, could gravity balance the pressure fairly closely? What kind of acceleration does the heart provide, on average? How close is it to 1G?
I wonder how closely the narrowings in the left and right jugulars resemble each other? Their location wrt the brain? Why women have this problem more than twice as often as men? Is it physiology or chemistry? I don’t think neurologists will ever lack questions to answer.
Guess it’s good I didn’t design the heart. If I had, it would never work harder than it had to.
Colin Rose said
A fantasy cannot be proven or disproven. It exists only in the minds of it’s believers. Any intervention in the body, pharmacological or surgical, is potentially dangerous; one is throwing a monkey wrench into a self-referential system optimally adjusted to its environment over billions of years of evolution. Rigorous trials must be done to prove any intervention is safe and effective for a given malfunction of the system otherwise known as a disease.
The disease care systems of the Western democracies drain huge unproductive amounts of money from their economies. This is just another example of useless tests and procedures. I thought maybe I could stop this one before it became entrenched. There’s still hope.
To repeat, with no increase in cerebral venous pressure there is no way that any blockage could cause any brain pathology, including iron deposition. Arterial pressure is another matter. Blocked arteries cause strokes not MS. MS has nothing to do with what the heart is doing. The heart never works harder than it has to.
There are no significant narrowings in either the right or the left IJVs in 99.9999999% of healthy people or MS patients. Very rarely there can be blockage of one IJV due to thrombosis and these patients serious problems but they do not include MS.
chrisoneeye said
Well I must be a pretty rare individual. I have severe narrowing of both jugulars. I would wager Las Vegas odds, and win, that the majority of MS patients have a similar problem. I have been tested with Doppler ultrasound. I have not had a venogram (you better not stick dye in my veins unless you’re willing to cut). I have not had an MRI yet, but I would prefer (not require or even complain if it were not possible or too expensive), that any surgery done on me were done with the advantage of a 3-d picture of my veins. Hey, you could throw in the arteries, I wouldn’t complain about that either. I’ve had a lot of MRI “interventions” and the one where I got diagnosed (and others) were done without contrast. I also have three stents in arteries (which as far as I know are not magnetic, and wouldn’t mess with the pictures).
You can’t prove a fantasy is not possible unless it isn’t, but you might be able to prove a fantasy is possible if it is (especially if commonly so and you are good at proving things).
It don’t matter how many nines you put after the first couple, for me. What you’re saying is there’s a one in a billion chance of significant narrowing. I say, leakage, collateral drainage, narrowing in arteries that balances the gravity fueling the drainage, either in an MS patient or a healthy person is detectable with Doppler ultrasound and not using a blood pressure cuff. Maybe I’m wrong, but one of my two oldest friends did it on me, with me watching. Unless he was very sneaky or very unfortunate, I have it. I’m going to get the SW/3DMRV, but I may have the surgery first. I haven’t decided. Wouldn’t you like me to decide, or do you think I am not informed enough?
I’d better not buy any lottery tickets. As Garp might say “I’m pre-disastered..”
-Chris Sullivan
Colin Rose said
From the look of your facebook portrait I would highly doubt you have severe enough narrowings in both jugulars to cause any disease. If you did, your face would look like someone who has been stranged, blue and swollen with protruding tongue and eyeballs.
What type of Doppler did you have? Having a friend, knowing your diagnosis, do a test on you, the interpretation of which is highly subjective, is not advised. If he had said you had normal veins would he still be your friend?
Before any surgery is done it is imperative to measure pressure gradients across the presumed blockage seen on a venogram. If upstream pressure is not high and there is no significant gradient, stenting would be useless as well as dangerous. Stenting of arteries is an entirely different procedure, irrelevant to any presumed venous pathology.
avascularsonographer said
Chrisoneeye, careful mate.
The Buffalo study indicated that while 55% of MS subjects had narrowing of the extracranial veins, so did 25.9% of the healthy controls.
That difference isn’t enough to state with any certainty whatsoever that venous stenosis has anything to do with MS – let alone is “potentially causal.” And this is on 500 subjects to date, not on the entire 1000 or so they’ll get to eventually.
And as for the statement in the Buffalo study press release relating to “the MS figure rises to 62.5% when those in the ‘grey area’ are excluded from the study'”, that’s simply incorrect science.
Correct statistics demand that you don’t throw out some of your results, just because they don’t neatly fit into your “yes” or “no” bins. All of the results need to be accounted for in your final statistics. Excluding “grey area” results is just cherry-picking, and leads to final conclusions that are meaningless.
(As a disclaimer, I’m a vascular sonographer in a hospital, and my previous work was in cognitive neuroscience research, which is where I get my statistical knowledge from.)
chrisoneeye said
You admit they can cause disease?
Looks can deceive. Not working, walking, driving, riding bike, or playing guitar anymore. Fall way too often, especially when head not upright. Use wheelchair or non-mobile chair in house mostly.
Already addressed face. Think that’s how I started. Many ways to avoid purple+death. Onset is gradual, if you are not born with it. Being strangled veryslowly.
Doppler brand? Famous Japanese name. Need protocol, make, model? Very recent purchase. 5 MHz probe I think, but not positive.
Surgeon will take measurements he/she needs.
-Chris Sullivan
chrisoneeye said
I hope anyone still reading this realizes that my last post (4., above) was in answer to Colin’s (5.above).
I can’t argue any more. I hope they have their minds made up. I do.
Thanks.
Chris Sullivan
chrisoneeye said
I hope anyone still reading this realizes that my last post (4., above) was in answer to Colin’s (5.above).
I can’t argue any more. I hope they have their minds made up. I do.
Thanks.
Chris Sullivan
chrisoneeye said
Buffalo is saying that CCSVI is associated with progression. Maybe the 10.2 % of patients who have ‘borderline’ MS who were excluded, (and I don’t see why this is cherry-picking) don’t have MS *yet*. Maybe the progression hasn’t gone that far yet.
Anyway later is said “When the 10.2 percent borderline subjects were included in the “normal” category (no venous insufficiency), the CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.”
Even if you take those results, I think you have significance.
chrisoneeye said
I’m not sure either. In my travels though I have seen explanations of this, involving multiway junctions and reflections of a flow into a vein branch instead of down. I don’t understand how one vein can overcome the pressure of another, but presumeably they are carrying different weights of blood, and the pressure would depend on the size of vessel and the amount of blood above the draining vessel. Like a water-tower, with different hoses attached to different points on its side and bottom. If it were a two-part watertower, with hoses between, and appropriate diversion hardware, could the water, even temporarily, be convinced to go back upwards? Does the heart take any part here? There can be a lot of collaterals, between heart and lungs, and elsewhere. Maybe they connected to each other in some screwy way? I’m not clear on this either. Doesn’t the heart pump venous blood to the lungs? Maybe there is something holding the blood back, and it pumps back up instead? The narrowing might cause a jet, in that case.
chrisoneeye said
In reference to the question about reflux: I talked today to a man who has just had the Doppler ultrasound scan done on his daughter. He said it was fascinating, to watch the way jugulars collapse when you are lying down, and your blood goes through other paths instead. So neck veins are more than collateral (original equipment :-), they look like they service different parts of your head depending if you are lying down or not.
I don’t know if he said the reflux only happened in one position or not.
But he said it definitely happened. They only looked at all the jugulars, and of those, it only happened in one, They were measuring direction and flow. He said he thought it was active, not passive. I thought he said it happened when you lay down, so it didn’t look like gravity was involved, except for the upright/prone switchover, which should provide some redundancy (but not if there is insufficiency. That sounds to me like the heart is involved. The guy doing the scan said, don’t lie down. He said this because if you have this insufficiency, there is a problem of drainage, which involves your jugular, it won’t happen when the jugular is not being used (you are lying down). Hers only happened in one of the two jugulars on that side; I don’t remember whether it was internal or external. Because it is done with gel applied to the skin, and her father went with her, they both saw and heard all that occurred on the monitor (the one I saw was based on a PC (it looked like Windows was running on it).
They are advertising this on the web. It is not on the Provincial health insurance, so it costs $. For more information see MSLiberation dot ca. Sorry about the plug, but I don’t have anything to do with them aside from I might go get them to redo my testing, but only because they are closer than Buffalo and I can afford it. For anybody who wants this it is available for money and
The place he had it done is close to here, about two hours’ drive, but you can fly to that city. I highly recommend to anyone in a position to influence doctors or politicians or knows someone with MS that they ask if they can watch this being done. Anyone who has seen it will be convinced, I believe.
It is congenital, although apparently veins are subject to stress, among possibly other chemical events, and can change, Also, collateral veins grow for various reasons of their own.
There seems to be a lot of heat, and less light, coming from one side or another of this discussion. I have learned a lot from this one. If there are people whose only or main influence in this is monetary, remember if you lose your health you lose a lot more than money, and anyway you can’t take it with you.
chrisoneeye said
If what I reported is true, and this reflux is happening, especially when you are not using the external jugulars because you are lying down, and the reflux is under pressure, it must be coming from the heart. Is it possible there is another kind of TR that cannot be diagnosed by looking, because it is in internal jugulars, and only happens when lying down? I would like to know how commonly this is found in internal jugulars, and how rarely in external jugulars.
I have reason to suspect mine was also in the internals. Maybe, because my friend was using a high-frequency probe, he was able to examine the internal jugulars, and that is where my narrowings are. Correct me if wrong, but I think the deeper you want to go, the higher frequency ultrasound probe you need.
This information would convince me as I have a notion of why it happens. If TR is normally found only by looking at the outside, when the patient is standing up, that might explain why you only find it when the patient is standing up, and also why exacerbations of MS are not there when you go to sleep, but are there when you wake up. This stuff is important to a lot of people.
There are already people sleeping standing up because it make their MS feel better.
Colin Rose said
It seems that Zivadinov has had second thoughts about pursuing this fantasy. If you call BNAC at 716-859-7521, you will hear a recording: “Effective March 4th, 2010, the CCSVI Venous Testing Program has been put on hold. Further information will follow.” At the moment in North America there are only a few for-profit private clinics claiming to be able to diagnose “CCSVI”. To date, no investigator has obtained a peer-reviewed grant to study “CCSVI” and I doubt if any ever will. Face it, Chrisoneeye, except in very rare cases, there are no significant blockages in anyone’s internal jugular veins and “reflux” presumably causing brain damage exists only in the eye of the biased beholder.
chrisoneeye said
And the earth is flat and the moon is made out of green cheese.
iagorc said
Any medicine doctor with the minimum capacity of judgement would notice that the called CCSVI makes no sense. The main cause why that kind of junk keeps making this repercussion, is that doctors themselves (majority) are as unable to distinguish junk from science as the poor patients who are exposed to that madness.
Evidence could be deceiving, most doctors are not prepared to deal with it.
Colin Rose said
The vast majority of doctors do realize “CCSVI” is hogwash. The reason they don’t it publicly is intimidation by the true believers. They have demanded the firing of Dr Freedman in Ottawa who has publicly labelled “CCSVI” as a hoax. I have been reported to the Principal of McGill University for “spamming” but I have never send a single unsolicited email on the subject. I have only made comments on facebook and twitter in addition to this blog. The true believers regard any disagreement as heresy punishable by ostracism.