This Is MS Multiple Sclerosis Community: Knowledge & Support

that's why it's so awful that they are doing substandard work. It really speaks to me of 'the guy with the most expensive machine must be right' and in truth they have dealt a large blow to the credibility of the entire project by arrogantly doing it wrong and saying it's right.

Even I having rrms and heading to poland am unsure if the 'missing 40%' from buffalo is because all the membranes and valve issues others find are just missed by buffalo or because they are not there. The reason I think they are there and buffalo just can't see them has more to do with believing in Putnam than anything else.

Clearly buffalo is out to prove the other model where neurology still reigns supreme, ms causes ccsvi, and using mrv is not only smart, it's better!
not.

Billmeik,

Why do you think the BNAC results are wrong ? Why do you think it is substandard ? What is the basis for such a statement ?

ozarkcanoer

Ozark ... I think EVERYONE believes the Buffalo results are not necessarily wrong ... but INACCURATE.


I'm glad they found CCSVI in you - that means they're getting better.

But why is everyone else finding CCSVI in the 90%s of people with MS ... whereas Buffalo can only find 60%?

Because they're not getting inside the veins and finding what's wrong.

WHY would - in the future - IF CCSVI is proved to be FACT in regards to MS would anyone ever need a doppler or MRV? Why not just go in there with the gold standard (Venography like Dr. Siskan will be doing for out of state patients) to find the problem right away.

It's a question of methodology. MRV and Doppler have found it in some (60%) ... but everyone actually going in is finding it in 90+PLUS%.

That's the difference.

IF Buffalo's intent is to be able to find CCSVI ahead of MS ... then their study IS GOOD. IF Buffalo's intent is to find CCSVI after MS ... then why not just go to the gold standard even if it is minimally invasive?

It's like using an X-Ray (doppler) when the bone is sticking through the skin (MS diagnosis = CCSV) ... you know it's broken ... now get in there and fix it right away - don't wait for the XRay (VENOGRAPHY - procedure).

In my mind, the reasons for using MRV and ultrasound for detecting CCSVI are twofold:

1) the "gold standard" a venogram is invasive and involves a hospital procedure---a vastly bigger scale of testing.

2) in the USA, it's MUCH more expensive to do a vengram than a MRV and ultrasound.

The $4,500 cost cited for BNAC is less then 10% of a venogram procedure.

It understandable that a Doctor would want some prior basis for CCSVI before ordering a venogram just on a cost basis alone.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I really don't have the tech chops to say, but when they get 60 and others get way more, it puts up red flags. Since I have rrms I am part of their 'lost 40%' and would be given a negative. (maybe)


The fact that they're getting higher numbers now is just more reason to not take the 60 seriously when all gp's and neuros take it very seriously. It's nothing personal against bnac I almost have to challenge their results if Im going to go to poland next week and believe in the tissue/valve issue simka found on me at false creek. My thoughts are that politics not science make publishing faulty low numbers smart.

Wow! A venogram costs over $45,000?

A venogram costs about 10,000 in US.

Mine did. That was for the hospital; another $13,700 for the Doctor.
However these figures do include the balloon treatment when my stenosis was discovered. It doesn't make much sense to do just a venogram, find the problem and then do nothing.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Where? You could PM me if you don't want it public. $10K is bargain basement pricing.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Billmeik,

I don't see that anything you wrote offers support for your statement that "Clearly buffalo is out to prove the other model where neurology still reigns supreme, ms causes ccsvi, and using mrv is not only smart, it's better! not." BNAC's publications, public presentations, and direct conversations are all opposite to what you wrote.

Prairie

There is a lot of bias in Dr Simka's patients and in Dr Sclafani's patients and in Dr Dake's patients. Goodness gracious I love all three of these brave doctors so this is NOT a slam against them. In all three of these cases the patients selected and elected to have the procedure and the physician knew they had MS ! People with mild MS do not go to Poland or Bulgaria or Stanford for treatment but they stay at home and wait for the science to play out. People who can't afford the treatment do not take these routes either and many of them are severely disabled and wouldn't go to Poland. There are no controls among the patients. If BNAC found 20% of controls have CCSVI then maybe that is good information. It isn't clear what the distribution of people are in BNAC's 58% (or is it 62%) OR in the 40%.

I am ready to run out and be liberated as much as anybody but don't say BNAC is doing sloppy research because YOU DON'T KNOW. Dr Zivadinov is going out on a limb and risking his reputation in order to study CCSVI. If he doesn't give you the results you want that's your problem. I support BNAC 100% !!! Who else is doing double blinded CCSVI studies ?

ozarkcanoer

I heard from someone who had the procedure done in New York that they were charged $15K, to their insurance company.

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"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

Was that just for a venogram? Or did include treatment also?

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Treatment also.

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"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

Remember everybody that when Dr Dake was doing the procedure that it was reported here on TIMS that he was charging $80,000 for the testing and procedure. Some people, back in the Dark Ages, were getting insurance to pay for this because they had the right level of venous malformation covered by their insurance. I'm not sure that would happen today. So $4500.00 is not out of line at all for BNAC to charge for the self-pay program. It is a shame that this program can only handle a few people at a time, just like Dr Simka !!!! But give them time. And remember that BNAC is planning a clinical study of the procedure on 30 patients. I'm not sure what that involves but it's more science. There are many many MS patients who will benefit from what BNAC is doing. There are only a few of us MSers who are actively looking at CCSVI. Please support BNAC in their efforts to understand CCSVI so EVERY MS patient in the world will benefit !

ozarkcanoer