Skeptic Mentality

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

Postby Lyon » Mon Nov 08, 2010 2:33 pm

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Postby Cece » Mon Nov 08, 2010 3:01 pm

Lyon wrote:
CCSVIhusband wrote: I believe Dr. Sclafani answered directly (a question you asked) ... that he said in his 3+ decades of medical practice in the field ... he has NEVER seen veins in the NON-MS population that he has seen since he began performing liberations. I guess you are choosing to ignore that piece of evidence? You can search for his response to your question ...
I remember the question and appreciated Dr Sclafani's response very much. A couple of things at play here though. One is that, even after I'm convinced it's still going to remain to convince the medical community and I'm pretty sure that Dr Sclafani would be first to admit that his word alone wouldn't convince them and I'm certain he wouldn't want that to hinge on his word alone anyway.

My personal feelings? I documented it at the time (which went over like a fart in church) but is that Dr Sclafani is doubtlessly an expert of what is known of the venous system and its routing.

Considering his many years of ER experience I'd dare put him as a foremost expert, but it's also important to realize that no especially accurate and trustworthy studies of the veins have been done and until recently no one had even been looking for venous stenosis. Accurate venous imaging is recent and as is becoming evident, it could be said that ACCURATE imaging still is beyond us.

Though he's an expert, Dr Sclafani's experience has often been under time constraint and pressure with the emphasis on keeping the patient alive. Additionally, his frequent canvas of gunshot, knife, explosion, car accident wounds seldom leave untainted viewing of the venous system.

It's only common sense that until recently venous stenosis wasn't an issue and Dr Sclafani wouldn't have been looking for it.

We now have better imaging and ARE looking for stenosis and still it isn't easily noticed. Considering all of the above we are to think he would have happened to notice stenosis and filed it in mind? It's not obvious how or why he would have noticed or kept it in mind and in essence what he would be noticing is the lack of something that he wasn't looking for?

Dr Zamboni feels that it's essential for researchers looking for stenosis to be trained in the tricks of the trade by him because it's evidently so hard to notice and Dr Sclafani would have noticed, while not looking for stenosis and most of the time without benefit of our modern, more accurate imaging equipment. Despite a long career, under those conditions it's unimaginable that he would have noticed stenosis, one way or the other.

You've given so much thought to this, when we could just ask him again.

The training that Dr. Zamboni gives is how to do a CCSVI transcranial color doppler ultrasound. We are talking about Dr. Sclafani doing a catheter venogram, not a doppler ultrasound, as part of treatment for his trauma patients or others.

I think it's a valid question for him: how obvious are these outflow obstructions in CCSVI, if you weren't looking for them would you go right past them during all catheter venograms in a forty-year career?
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Postby Lyon » Mon Nov 08, 2010 3:18 pm

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Postby Cece » Mon Nov 08, 2010 3:34 pm

Lyon wrote:
Cece wrote:You've given so much thought to this, when we could just ask him again.

The training that Dr. Zamboni gives is how to do a CCSVI transcranial color doppler ultrasound. We are talking about Dr. Sclafani doing a catheter venogram, not a doppler ultrasound, as part of treatment for his trauma patients or others.

I think it's a valid question for him: how obvious are these outflow obstructions in CCSVI, if you weren't looking for them would you go right past them during all catheter venograms in a forty-year career?

I'd be interest to hear but....not to prove Rick correct in that we skeptics will never be convinced, but in this situation, considering the points I've made and others, I'm not easily going to be convinced and last time Dr Sclafani's response wasn't much more than I've been doing it for years and would have noticed.

Maybe he will expand on this answer. No, his word is not gospel...I've disagreed with him at least once in the last seven months...but he is the only one here with actual experience putting catheters in veins.
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Postby concerned » Mon Nov 08, 2010 3:36 pm

CCSVIhusband wrote:

concerned doesn't seem to think it's enough that Polio doesn't exist (for the most part) anymore because "it hasn't been cured" ... so are we going to have one of those, where proof comes out, it is stopped, but it's not "cured" so how does CCSVI ever "cure" MS because you have to know that someone has MS before they have CCSVI? Like I've said ... circular logic.



I never said it isn't enough that polio doesn't exist in our part of the world, but I have a friend from Bangladesh who is in a wheelchair because of polio, and there was no cure for him. Preventing something isn't the same as curing it, that's all I said.

Also, it isn't enough for the WHO that people in our part of the globe don't get polio, they're still fighting it elsewhere, even today in the paper there was a picture of a little girl in Afghanistan get a polio vaccine and the article talked about the WHO's continued efforts to fight polio.


cure (kyr)
n.
1. Restoration of health; recovery from disease.
2. A method or course of medical treatment used to restore health.
3. An agent, such as a drug, that restores health; a remedy.


Preventing isn't the same as finding a cure, that's just not what the word means. And I think, especially in this context, being nit-picky about language with so much at stake is very important.
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Postby Lyon » Mon Nov 08, 2010 3:48 pm

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Postby Cece » Mon Nov 08, 2010 3:51 pm

I've already asked. 8)
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Postby fogdweller » Mon Nov 08, 2010 4:44 pm

The way science moves forward is by reproducable results. If only Zamboni or people specially trained by Zamboni can ever get those results, sorry, but they aren't real.

I believe they are If people do not perform the experiment (or the physical exam ) correctly or do not have the correct scientif instruments, they will not necessarily get accurate results. I also bellieve that special training and special techniques are needed. Especially if it is a relatively new phenomenon.

That being said, who says it is not as important as what is it that we need to prove or disprove, and how do we go about it. If it is real, then within 4 or 5 years any IR and MRI tech worth his/her salt should be able to prove it. If not, then scientists/MDs are justified in refusing to believe it.

That is why Dr. S and Dr. Z are spending so much time figuring out standardization.
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Postby Lyon » Mon Nov 08, 2010 4:53 pm

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Postby NZer1 » Mon Nov 08, 2010 5:02 pm

I have to agree with the general thought here that the results that have been accepted from the medical journals all have their purpose, they all have their points of reference and the intension has been proved to the satisfaction of the researchers.
The bottom line of all these 'research studies' is that there is money and egos involved.
No one has yet said here are the subjects for testing theories, here are the histories of the patients and here are the controls. Now each group does their testing and conclusions on this group. Eliminating the various reasons for selecting cohorts and giving 'science' a chance to emerge.
Too much is at stake for any party to be wrong and too much to be right.
The bottom line is that it's about us, there needs to be transparency.
More will be learnt than expected and most researchers will benefit, the need to be right will mellow and the truth will emerge.
THEN some testing to see what benefit there will be for people with repairable vascular issues.
All it will take is co-operation and money!
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Postby drsclafani » Mon Nov 08, 2010 5:50 pm

Cece invited me to join this discussion. These posts are very long and of a polemic and philosophical bent. So i dont know how long i will participate but there are some things i said that bear clarification.

Lyon wrote: I remember the question and appreciated Dr Sclafani's response very much. A couple of things at play here though. One is that, even after I'm convinced it's still going to remain to convince the medical community and I'm pretty sure that Dr Sclafani would be first to admit that his word alone wouldn't convince them and I'm certain he wouldn't want that to hinge on his word alone anyway.




you know, i cant spend a lot of time trying to convince those who have already made up their minds that this is unproven. Neurologists can remain skeptical. it doesnt matter to me at this point. I am happy to educate and dialogue, but i, like many patients, just do not feel i have the time to dick around and prove something I know to those who dont want to accept it. I am an action guy. I see these veins in MS and i am convinced they are abnormal. When i show my vascular colleagues , they are impressed. They readily accept that this is not normal. Why....need i answer? it is our expertise and we know what looks normal.

My personal feelings? I documented it at the time (which went over like a fart in church) but is that Dr Sclafani is doubtlessly an expert of what is known of the venous system and its routing.


Perhaps an expert on this forum. but i accept the expertise of many others who have looked at this in many different forms.


Considering his many years of ER experience I'd dare put him as a foremost expert, but it's also important to realize that no especially accurate and trustworthy studies of the veins have been done and until recently no one had even been looking for venous stenosis. Accurate venous imaging is recent and as is becoming evident, it could be said that ACCURATE imaging still is beyond us.


i am not sure what this means. There have been studies of the veins and they have noted many things. For example we know that 15% of patients do not have valves in the jugulars. it is inconceivable to me that pathologists looking at veins long enough to note the absence of valves in 15% of patients would not have recognized stiff, inflexible, stenotic valves or stenoses above the valves due to hypoplasia , and not commented on that in papers reviewing the normal anatomy. But if we are asking whether someone should do venography on hundreds of normal subjects to prove that stenoses are atypical of normal, I say we need to see whether we have the time, money and resources to do this.

Though he's an expert, Dr Sclafani's experience has often been under time constraint and pressure with the emphasis on keeping the patient alive. Additionally, his frequent canvas of gunshot, knife, explosion, car accident wounds seldom leave untainted viewing of the venous system.

It's only common sense that until recently venous stenosis wasn't an issue and Dr Sclafani wouldn't have been looking for it.


as i said above I WAS looking for abnormalites like narrowing, which is a common imaging finding of trauma.

We now have better imaging and ARE looking for stenosis and still it isn't easily noticed. Considering all of the above we are to think he would have happened to notice stenosis and filed it in mind? It's not obvious how or why he would have noticed or kept it in mind and in essence what he would be noticing is the lack of something that he wasn't looking for?

i do not think that venography has improved greatly in the past 10-15 years. it was and remains a quite clear imaging study. I do not think that MRv or CTv are any better. They might on occasion be preferable because they are less invasive, but they are not better at seeing the veins.

[/quote]Dr Zamboni feels that it's essential for researchers looking for stenosis to be trained in the tricks of the trade by him because it's evidently so hard to notice and Dr Sclafani would have noticed, while not looking for stenosis and most of the time without benefit of our modern, more accurate imaging equipment. [/quote]
dr z was speaking about ultrasound. This test is a long standing test that is highly operator dependent. The techniques used prior to ccsvi are not applicable. I think we have already discussed that in many areas. It is not that the ultrasound doppler test for ccsvi is particularly difficult to perform. it is just different and people continue to do the ultrasound the way they know, not the way it should be performed FOR THIS ENTITY. It will just take some education before it is as regular a diagnostic test as any other ultrasound it. But for the moment, zamboni is the main teacher.

Despite a long career, under those conditions it's unimaginable that he would have noticed stenosis, one way or the other.


It is true that i was looking at carotid arteriograms and their venous phase images during emergency situations. but rest assured that all of these angiograms were reviewed after the heat of the battle had cooled. Also these angiograms were done for injury. As such a trauma radiologist looks at all possibilities, including occlusions of the jugular veins. I was exploring at that time whether or not damaged veins needed to be ligated. Turns out that they do not unless the wound allows the blood to drain onto the floor. so, my dear friend, Lyon, I was very much focused on the veins. Not looking for obstructions but looking for occlusions. I can say that there were certainly cases of occlusion of veins. This was always associated with significant hematoma in the neck that would compress the veins

Many of the procedures were performed to EXCLUDE injury and provide a reason NOT to surgically explore the neck. In these situations, where there were no hematomas, the veins were large, uniform in caliber, did not have extensive collateral veins, the xray dye did not hold up at the base of the neck. There were no stenoses.


Does that mean that there are not going to be obstructions that do not result in MS? Absolutely not. Indeed we know of several situations where obstructions of the veins do not lead to MS.....Patients with renal failure who get catheters in these veins, occlude or stenose these veins without developing ms, patients with radical neck dissections that results in ligation of these veins, do not develop ms.

however they do develop mental confusion, lethargy, headaches, ataxia, etc.

but in answer to your assumption that in the heat of battle things get missed, i would say generally no. When life and death are in the balance, my mojo gets going and i think i become hyperaware, not distrated or sloppy. its the nature of the game.
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Postby CCSVIhusband » Mon Nov 08, 2010 6:23 pm

:D

From a man much smarter than I ... (at least regarding veins ... - he's a Yankees fan, so debatable on some other things)
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Postby Lyon » Mon Nov 08, 2010 6:34 pm

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Postby fernando » Mon Nov 08, 2010 7:10 pm

Having a doctor in the forum, I don't understand why Scorpion, Malden, Concerned, Lyon, etc don't go to the thread of Dr. Sclafani and post their doubts. Even more when CCSVI threads are FULL of more or less the same question by the same people.

To think that CCSVI is like bee venom therapy and at the same time ignore the possibility of educate themselves directly through a well respected doctor is beyond my understanding.
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Postby Lyon » Mon Nov 08, 2010 7:33 pm

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