ccsvi how it could be wrong

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Billmeik » Fri Jan 15, 2010 6:40 pm

There is no doubt that this ccsvi thing would be a smaller less important area without cheerleader. Much thanks.

All that this thread is doing is trying to define the strong points of opposition and answer them. It may be public venting of fights I am having with my doctor wife too.

I mean take lumbar punctures. There is a massive tradition of doctors checking the pressure of cerebrospinal blood flow. To tell them there is reflux going on that wouldn't show in those pressure readings is a leap...
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Postby Vonna » Fri Jan 15, 2010 7:29 pm

Just want to say, I heard about this about three weeks ago, and have been excited sense then. It just makes sense! When I look back years ago to my first symptoms, and how they progressed, CCSVI fits perfectly. Although I am normally a skeptic, I was excited the moment I heard about it.

Of course, I have studied it every sense to see if I could prove myself wrong, so as not to have false hopes. It's not working... I'm still excited!

Thank you everyone on this board for pulling together on this. I do believe it is very important to do so.

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Postby Cece » Fri Jan 15, 2010 10:20 pm

Agreed. Less swooning over what we potentially have here, more sticking to established facts. I'm reminded of the saying...and maybe I have it wrong...beginnings are delicate times.

And yet I would count the 16 person study as replication, albeit on a minute scale. The scanning was done at Buffalo, a sepate entity. When the statistics are as high as 100% MSers have venous cerebrospinal abnormalities vs 0% nonMSers, a small study is more than able to tease that out.
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Postby Cece » Fri Jan 15, 2010 10:33 pm

Billmeik wrote: I mean take lumbar punctures. There is a massive tradition of doctors checking the pressure of cerebrospinal blood flow. To tell them there is reflux going on that wouldn't show in those pressure readings is a leap...


No idea on this one...from the lumbar puncture, they can assess the pressure of the cerebrospinal blood flow? Is it a precise reading? Would reflux be expected to show up as a change in pressure?
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Postby Sotiris » Sat Jan 16, 2010 3:04 am

cheerleader wrote:[...]
The joint Buffalo/Italy study is the endovascular treatment study mentioned above, which was published last month...it included 16 patients, 8 from Italy and 8 from the US.[...]
I have posted it already in the research sticky but I think it is good to repost it here. The joint study mentioned is the following:
P. Zamboni et al. 2009: The severity of CCSVI in patients with MS is related to altered Cerebrospinal Fluid dynamics. Functional Neurology, Vol. 24, No. 3, pp. 133-138.
After registration, the full paper is available free of charge (with a watermark about the copyright, i.e. "© CIC EDIZIONI INTERNAZIONALI"). I do have a direct link but due to copyright reasons I'm not sure if I am allowed to post it.

cheerleader wrote:[...]The reason it is important to discuss historical facts like "Putnam's dogs" is because we can learn from history. MS patients pushed Dr. Putnam for THE CURE! and he was unable to keep his research going...he tried addressing the venous issues he discovered with blood thinners, and it did not work. MS patients were discouraged and medicine moved on to the EAE theory.[...]
I keep thinking that if some of his MS patients had Hughes Syndrome instead of MS he could have cured them. And since Hughes Syndrome was only lately recognised and some patients were misdiagnosed as having MS, we do not only have an animal model of venous MS but also a human one.
Last edited by Sotiris on Sat Jan 16, 2010 11:56 pm, edited 1 time in total.
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Postby wobbly » Sat Jan 16, 2010 8:16 am

spent most of the day thurs at the jake/ got lots of the scoop / this is very very real/ this is not going 2 get any1 out of a wheelchair itself / it does very very realisticly stop progression if the stenosis is kept open/which came 1st the chicken or the egg/ we all want answers now / the crew at the jake r working very very hard on this that much i no / they r an amazing bunch/ if there r answers 2 be found THEY will find them / so - try 2 be patient this is nothing but very exciting news/ PEACE :?: :?: :?:
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Postby ozarkcanoer » Sat Jan 16, 2010 9:21 am

Thanks, wobbly !!! I had to stop and think a minute about where "the jake" is, LOL. Then I realized it was the Jacobs Neurological Institute and/or the BNAC !! It's great to hear from some one who has just been there. It's another bit of hope.

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Postby patientx » Sat Jan 16, 2010 9:43 am

Just curious - did anyone actually read the entire paper on Putnam's dog experiments?
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Postby Billmeik » Sat Jan 16, 2010 9:53 am

I have a copy of putnam's paper showing up soon. We're talking deep archival stuff in the back rooms.


Im canadian so I dont see ccsvi in its fragile beginning at all. Once its been on w5 its part of the mainstream discussion. I think the main way to make it better is to hold it up and shake out the bugs, not act defensive.
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Postby patientx » Mon Jan 18, 2010 1:57 pm

patientx wrote:Just curious - did anyone actually read the entire paper on Putnam's dog experiments?

So, I'm going to take that as a no. And this is the problem with drawing conclusions just from abstracts, or barring that, a singular reference by another author.

From Dr. Putnam's paper, "Studies in Multiple Sclerosis: Encephalitis and Sclerotic Plaques Produced by Venular Obstruction:"
Dogs of various ages were operated on with aseptic precautions...
the longitudinal sinus was ligated in two places in such a way as to isolate a portion of it into which one or more cortical veins entered. The sinus was pierced with a fine needle, and a mass was injected in such a way as to run backward, upstream, into the cerebral veins, thereby obstructing them


The lesions found in the remaining ten animals varied according to the agent used to produce the obstruction...
In one instance a colloidal solution of French shellac was injected, with the result that the animal died on the following day. The dog's brain showed a pathologic picture resembling that of "hemorrhagic encephalitis" which is ascribed to arsphenamine poisoning. In two experiments a sterile suspension of corn-starch was employed, which produced areas of complete softening. The most satisfactory substances for the purpose in view were found to be various mixtures of oil. Lard oil, which is of course identical with the fat in the animal's own blood, was usually employed, on the grounds that such a bland and physiologic substance could scarcely exert a chemical influence on the vessels or on their surroundings.


So, Dr. Putnam cut into the sinus vein and injected various substances back up into the cerebral veins, creating thrombosis in those veins. This is a very different situation than clamping a neck vein, like in CCSVI. And it is not true that he didn't introduce a foreign substance.

There was some debate as to whether the lesions he saw really resembled MS lesions. And there is no mention of the dogs exhibiting clinical signs or symptoms similar to MS.

Further, he says the high pressure used in injecting the substance could have caused some of the damage:
The only drawback was that when injected under pressure sufficient to force it to the venules it was apt to rupture from smaller vessels and form tiny cysts, chiefly in the border between the cortex and the white matter. Individual droplets of this kind lay inert in the tissue without provoking gliosis or encystment (fig. 2), but if they occured in groups there were often some actual destruction of the tissue and scarring.


Dr. Putnam believed the cause of MS was thrombosis, and he treated patients with Dicoumarin for years before doing this experiment. The fact that Dr. Putnam's work was largely forgotten is probably because his theory wasn't correct. He also had many other interests relating to neurology, some other treatments for MS, some for other conditions, like epilepsy.
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Postby cheerleader » Mon Jan 18, 2010 2:12 pm

Why post the Putnam question here, X? No one mentioned it on this thread. You brought him up first here...

The similarity between such lesions and many of those seen in cases of multiple sclerosis in man is so striking that the conclusion appears almost inevitable that venular obstruction is the essential immediate antecedent to the formation of typical sclerotic plaques.

Putnam (1835). Studies in multiple sclerosis: encephalitis and sclerotic plaques produced by venular obstruction. Archives of Neurology and Psychiatry. 33: 929-940.

Here is the original Putnam thread. We talked about him injecting substances into veins and obstructing the veins with stuff-
http://www.thisisms.com/ftopic-9669-day ... sc-15.html

Not sure how you got the entire paper, x. Lucky you, would love to read the whole thing!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Billmeik » Mon Jan 18, 2010 8:08 pm

the details of that Putnam paper are bad news to me. Its old too. Still I bet someone at stanford is finding out the real story right now...



will be good to find out.
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Postby patientx » Mon Jan 18, 2010 9:12 pm

Putnam's study was mentioned a few times in this thread. And that is why I posted here.
while a productive thing to do while waiting is to read Putnam's amazing dog studies from 1936

The reason it is important to discuss historical facts like "Putnam's dogs" is because we can learn from history. MS patients pushed Dr. Putnam for THE CURE! and he was unable to keep his research going...he tried addressing the venous issues he discovered with blood thinners, and it did not work. MS patients were discouraged and medicine moved on to the EAE theory. Perhaps if Putnam had not been rushed or pushed for a cure, he may have continued on in his venous studies.
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Postby patientx » Tue Jan 19, 2010 7:51 am

Billmeik wrote:the details of that Putnam paper are bad news to me. Its old too. Still I bet someone at stanford is finding out the real story right now...



will be good to find out.


I wouldn't get that down on Putnam's research. His dog experiment is interesting, and he did show that blockages in the cerebral veins can cause brain lesions (at least in dogs). Maybe someone will pick up with the animal experiments where Dr. Putnam left off.
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Postby happy_canuck » Tue Jan 19, 2010 4:19 pm

You can a later paper by Putnam (1941) discussing occlusion of blood vessels and MS here:

http://www.ncbi.nlm.nih.gov/pmc/article ... 40/?page=1

You have to read it page by page, though.

Also, Scheinker drew the conclusion that seems to indicate the absence of clinical symptoms in Putnam's dogs is just because the lesions were just the earliest sign of the disease:

"The similarity between such experimentally produced lesions and those observed in the early stage of multiple sclerosis would seem to indicate that the early lesions of multiple sclerosis might be also produced by local circulatory disturbances" ( p. 583).

Scheinker, M. (1958). CIRCULATORY DISTURBANCES AND MANAGEMENT OF MULTIPLE SCLEROSIS. Annals of the New York Academy of Sciences, Volume 58, Issue The Status of Multiple Sclerosis, 582-594.

~ Sandra
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