CCSVI Neutral or Critical Perspectives

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

Postby scorpion » Fri Aug 06, 2010 2:44 pm

Wahoooooooooooooooooooo. This is awesome!!!!!!! No name calling. No one getting angry. Can we please keep it this way???? :peace:
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Postby Lyon » Fri Aug 06, 2010 3:16 pm

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Postby cah » Fri Aug 06, 2010 3:19 pm

There are protocols from Dr. Haacke (MRI) and Dr. Simka (doppler). But it's not all about protocols and equipment. It also needs training and experience. I always wonder how anyone can question that. I generally know how to use a knife and even have a surgical scalpel, yet I'm quite sure I coudn't do a successul surgery, even with the right manuals and protocols. (Must admit that I never tried, though ;) )

Another example: Every Car comes with a extensive manual and traffic rules/law are well defined. Yet you still have to learn how to drive. And knowing how to drive a car doesn't mean you know how to drive a truck or tractor.

Perhaps this is why Dr. Zamboni is reluctant to provide a protocol. If someone writes a book "How to drive a car", claiming that you don't need anything else than this book (and a car), would you think this would be anything good?

If training is crucial, publishing protocols openly could really be unfavorable, I think. Or at least just doesn't make sense.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Lyon » Fri Aug 06, 2010 3:32 pm

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Postby Cece » Fri Aug 06, 2010 4:10 pm

Lyon wrote:If there is ANY chance of coming up with an "easy reader" version Dr Zamboni had better do it quick because there will be a very obvious time frame in which organized science will give up on CCSVI and with or without merit, if results are not replicable within reasonable effort and knowledge, CCSVI will be resting with the Titanic.

I do not think this is true. The Buffalo results showed that approx 65% of MSers have CCSVI compared to approx 20%. This was found using MRV, which may not be the best test to find CCSVI. But those results replicated the initial findings (that CCSVI and MS are correlated to a high degree, whatever the exact percentage is). This is big, it's not sinking, it's an age of discovery and full sail ahead! :)
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Postby scorpion » Fri Aug 06, 2010 4:19 pm

So we have doctors with the same amount of schooling and training as Zamboni and they can't figure out how to find a blockage in a vein? That is another claim that seems far fetched. I mean the people performing these tests are not joe six packs like me. They are people with a superior degree of understanding of the vascular system yet none of them seem to get it right.
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Postby Cece » Fri Aug 06, 2010 4:30 pm

I dug up what Dr. Sclafani said about Zamboni's protocols, post his Italy trip:
drsclafani wrote:That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.

Erica, the PhD who works with paolo, is phenomenal. She is very experienced at finding the veins and making pictures that are clear, unquestioned and sensible.

She starts with the right side of the neck in the lying down position. She does the doppler of the jugular vein in three areas J1 near the clavicle, J2 near the thyroid, and J 3 above the carotid bifurcation. She looks to see the direction of flow in each area. she images transversly. This shows the carotid and the jgular simultaneously. The color is supposed to be red and blue.....one going toward (IJ vein) and one going away (carotid) from the heart. Showing the two vessels together makes it very clear that they go in opposite directions if normal. Patients have sent me many images where the vein is seen in profile, but alone. cant figure out flow direction like that.

ok. after looking at the IJV at the three areas, she looks for the vertebral vein and artery. again, the two vessels are imaged together and the colors should be opposite.

Great, then she has the patient take a big breath which allows the veins to distend. she measures the cross sectional area of the jugular in its largest dimension.

Then she does a transcranial doppler looking for the deep cerebral veins. (this is the part i find the most difficult) She is looking for reversal of flow. that is always abnormal.

Finally puts the Bmode on and looks at the anatomy, looking for webs, stenoses, valves, etc

THEN She does everything again, in the upright position.

THEN, she does everything on the left side in just that order.

This study is quite challenging to learn. My colleage dan zinn finally got it. just by watching a few cases. It is not necessarily the most difficult but it certainly is quite specific and doing it wrong is going to lead to failures

As I was saying, I have reviewed a lot of studies done around the world. For the most part , they suck. when you get half the views, or the wrong manuevers, one is left with the distinct impression that you have no idea what it all means.

So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.

by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.

drsclafani wrote:
simone wrote:
drsclafani wrote:So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.


by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.



Is anyone in the US or anywhere doing that?


no, he is really trying to validate it. He is not ready to publish

What are your thoughts on how to create a standard? [ If you don't mind]


a standard should be evidence based, practical and reproducible. It should be inclusive but with high expectations. It should be reviewable, and available. It should be by consensus.

ps did i hear dr Z say they are going to do a blinded study of sort? ( brain fog is getting worse)


yes
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Postby Lyon » Fri Aug 06, 2010 4:37 pm

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Postby Cece » Fri Aug 06, 2010 4:44 pm

The conclusion at the symposium was that the MRV testing does have value. Not perfect and not worthless. My understanding is that it shows up areas that are narrowings but they are not the true stenotic narrowings; they are areas of low flow but are phasic and due to the narrowings down below; but these phasic narrowings are still signs of CCSVI. :wink:
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby cheerleader » Fri Aug 06, 2010 4:46 pm

Cece, thanks for posting Dr. Sclafani's explanation. I know- it seems crazy, scorpion. But there it is. Jeff was dopplered (is that a verb? now it is.) by a very proficient doppler tech at Stanford, and his result was "normal". Then- the MRV showed he had serious occlusions. Why? Dr. Zamboni explained to me that if the protocol wasn't done specifically in the manner posted above, collaterals would show blood flow, and would be seen as normal. But collaterals indicate a blockage or malformation and slowed drainage-not really normal.

I'm sure Dr. Zamboni was not happy that I brought his research to Stanford and out of his hands...it's not about ego, it was more about him wanting to make sure the doctors understood what they were looking for. "It's not just the stenosis...it's the flow" was his quote to me last September.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Fri Aug 06, 2010 5:00 pm

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Postby scorpion » Fri Aug 06, 2010 5:20 pm

Now folks this is coming from a layman when it comes to the vascular system but for the devastation this disease causes should it really be that hard to find the abnormalities? I mean if a blockage causes blindness, paralysis, etc. should it be that difficult to locate? I mean we are talking some serious damage to the nervous system not your run of the mill hand numbness.
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Postby Cece » Fri Aug 06, 2010 5:23 pm

scorpion wrote:Now folks this is coming from a layman when it comes to the vascular system but for the devastation this disease causes should it really be that hard to find the abnormalities? I mean if a blockage causes blindness, paralysis, etc. should it be that difficult to locate? I mean we are talking some serious damage to the nervous system not your run of the mill hand numbness.

It is serious damage...that only shows up 30 years into the disease process, on average. Chronic, not acute.
Lyon wrote:Sorry, you're quoting scripture to atheists (of course that's a figure of speech).

That's quite clever.

Unlike religion, where faith may be all one ever knows, we will know one way or the other, in regards to CCSVI, once all the research is in. I wish all that research were in already. You are right, what I said about MRVs and phasic narrowings is all practitioner-based, from what the docs are finding clinically, but it has not been done up in a research trial yet.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Lyon » Fri Aug 06, 2010 5:30 pm

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Postby Cece » Fri Aug 06, 2010 5:33 pm

Lyon: see Chiari, Budd. ;)
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