Only 55% for buffalo study?

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

Postby costumenastional » Wed Feb 10, 2010 10:12 am

Cheer is right one more time.
Thank you, your posts are very valuable and i must say that i really dont know what i would think if it wasnt for you. Every time i read them i understand that i should think twice before speaking.

Having that said...
Yes, we should wait a bit longer. They are planning to start testing using more advanced methods - equipment. Who knows what they will find?
Things tend to change often, but the mainline is the same. CCSVI exists, it is related with MS and allow me to stick with the less formal newsletter where Zivadinov addressed patients openly and said what he said.

Also, we MUST read the full paper.

One more time, forgive me for being negative when i first saw this.
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Re: let summarise

Postby costumenastional » Wed Feb 10, 2010 10:25 am

christophelux wrote:And quote that there is a correlation in MS population between CCSVI presence and severity of the disease could mean that the MS beginners RRMS do not yet show CCSVI as often as more " advanced" people.

Moreover, if I understand correctly only doppler results are included not MRV (contrary to Zamboni study which was based on Doppler and MRV). So maybe percentage will go up with CCSVI cases detected only with MRV not doppler.

Cheerleader or others, could you confirm last point?


Yes, please if someone gets this better it could be important.
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Postby bluesky63 » Wed Feb 10, 2010 10:28 am

When I went to sign up for the Buffalo study in the first place, I saw that they were *excuding* anyone who had any sort of venous abnormality that they already knew about. I wondered if that would skew their results, because it would potentially exclude people who would then end up showing CCSVI. For instance, some of the members here have mentioned venous angiomas, and at least two of those people have subsequently been found to have stenosis (not at Buffalo).

Wouldn't it have been more reasonable for the purpose of this study to just take people with MS no matter when their venous status?
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Postby gibbledygook » Wed Feb 10, 2010 10:28 am

The paper clearly states that only transcranial doppler is used.

These preliminary results are based on the first 500 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at UB in April 2009. Investigators are planning to examine 500 additional subjects, who will be assessed in the second phase of the study with more advanced diagnostic tools.


Then Zivadinov states:

"The data encourage us to continue on the same course," he says. "They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available."


And yes, bluesky, why did they exclude people with known venous problems - probably to get purer than pure results...?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby willm » Wed Feb 10, 2010 10:32 am

Something that worries me about these findings is that they do not support an important part of Dr Zamboni's research.

If I remember rightly, Dr Zamboni's study did not find CCSVI in any of the controls - something that I have been quoting to anyone who will listen for the last 3 months.

Um, I don't how I feel right now......
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Postby LR1234 » Wed Feb 10, 2010 10:39 am

Could someone clarify these 2 statements?

When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.

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.

???? I am confused!
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Postby annad » Wed Feb 10, 2010 10:40 am

To willm,
I'm no expert. . . just a person with MS experience. . . good point but Buffalo looked at far more people than Dr. Zamboni did.
???
who knows, it's still early
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Postby costumenastional » Wed Feb 10, 2010 10:41 am

Dont be. Patients were double in numbers.
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Postby Arcee » Wed Feb 10, 2010 10:41 am

Just some perspective from something I picked up at the Hamilton workshop. There is a learning curve in doing these exams. And apparently if a place does them over time for different research studies, they have found that their percentage increases. A baseline rate of 65% for this kind of testing not only is not uncommon, but perhaps should be expected. (And like with marketing any kind of product or service or idea, it helps to set people's expectations properly so you can meet or preferably exceed them.)
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Postby gibbledygook » Wed Feb 10, 2010 10:42 am

L, they're just excluding the 10% from the data altogether which would naturally increase the proportion of MSers and controls with CCSVI.
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Postby ozarkcanoer » Wed Feb 10, 2010 10:46 am

Another point to consider : BNAC only found 55-62% of people with MS who have 2 of the 5 Zamboni-defined malformations. Further study may show other vascular problems that have not yet been identified that could come under the CCSVI umbrella. Dr Schelling might have some ideas about this. Golly there are a lot of vascular specialists in the world who can address this. And maybe now they will !!!

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Postby cah » Wed Feb 10, 2010 10:48 am

What I don't understand right know (besides a lot that I don't understand, too ;) ) is:

How is MS, CCSVI and iron deposition in the brain linked?

Does everyone with MS (and maybe not having CCSVI) have iron deposition?

Does everyone with CCSVI (and maybe not having MS) have iron deposition?

Could it be that the iron deposition is the reason for MS, and this can be triggered by different things, one of them CCSVI? Is that possible?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Billmeik » Wed Feb 10, 2010 10:50 am

I want the back story. If Simka saw 95% and Buffalo saw 55% and False creek saw 45% and Germany saw 0% then someone is wrong. I feel like I'm getting sucked into a mushy quagmire when it used to be clear. Reality is like that. I like the fantasy.
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Postby sou » Wed Feb 10, 2010 10:59 am

Hi.

When I was initially scanned, the 100% Zamboni's correlation was enough for my doctors to call him a charlatan. "This can't be!" without any scientific proof of why this couldn't be. This 55% is going to create a more positive attitude of the medical community. because it will look more real, whatever that means. So, the question of the patients changes from "Everybody has it, doctor. Can you find mine?" to "I want a scientifically supported, evidence based, answer of whether I belong to the CCSVI group or not."

My opinion is that this data is neither negative, nor positive. My radiologist and I have learnt the hard way, after several false negatives, that the doppler scanning is very complicated and, even well trained staff, could result to errors. What is missing from this study, in my very humble opinion, is experience. As for the blindness... Doppler scanning is an interactive procedure. You can't just study the data after collecting it and come to conclusions. The interactivity itself lifts the blindness.

The matter is not straight-forward at all. :-(

Mates, we participate in history unfolding before our eyes. How many people have sacrificed themselves, how many errors were done when trying to master new discoveries? What to mention? The discovery of America? The landing on the moon? The first satellites in orbit?

This is a proof that science can be wrong, only because it is performed by humans. One of the 2 studies was badly performed: Either Zamboni was wrong or Buffalo. Who is the loser? SCIENCE. But this is not exactly a loser. This is how it evolves.

Let us not give more value to scientific data than what they really are: scientific data. And wait for the official papers to see what exactly has happened. I would be very interested to read Zamboni's comments on these results.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Bobbi » Wed Feb 10, 2010 11:01 am

Maybe I'm just reading the article wrong but...
Sounds like there is still more data to come on the first 500.
From the News Release:
"The data encourage us to continue .... We will know more when the MRI and other data collected in the CTRVD study are available. The analyses are being conducted by an independent statistician."

The % could be greater when they include these results!!
Correct me if I'm off track.
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