This Is MS Multiple Sclerosis Knowledge & Support Community

I hate to tell you all but BNAC using ultrasound and MRI/MRV only found stenosis in my right IJV. My IR found stenosis in both IJVs during my venography. So I have a stent in both IJVs. What we need is a method of testing for CCSVI that is not so error prone. My experience tells me that they (BNAC) may be finding false negatives because they did on me. And they didn't test my azygos that has a twist.

ozarkcanoer

not biting, lyon.

Having a bit of a feel for the scientific method from my masters research I thought I'd add my 2c

What do we have:
-a hypothesized correlation between ccsvi and ms
-anecdotal evidence that stenting and angioplasty improves ms state

What we don't have
-a universally accepted methodology for testing for ccsvi (see debate of scans etc). Venography? Maybe
-as we don't have this we have no research yet that proves or disproves the hypothesis
-if we do see research using an agreed detection method, that shows correlation, it will remain to be seen if there is a causation relationship
-if correlation exists then study of treatment options would be logical

I think the frustration in the forum comes the the distance we are still are from testing of the hypothesis and the anecdotal results people are seeing.

Unfortunately anecdotal evidence has it's flaws so we can't be surprised that the scientific community does not accept it. My brain wants ccsvi to be true but as yet there simply is no proof of a causal relationship. Bring on the research!


http://richarddawkins.net/articles/2893 ... ic-results

dreddk wrote:Having a bit of a feel for the scientific method from my masters research I thought I'd add my 2c

I don't dare comment any more than to agree.

well summed up, dred. hear hear re research certainly there are plenty frustrated by the waiting, that's clear.

patientx wrote:

Cece wrote:I much prefer the argument that we can dismiss their findings because the MRV imaging is not being found to be as accurate as it should be when BNAC study participants go in for catheter venogram treatment.

But that would be incorrect because the doctors at BNAC used ultrasound, specifically Zamboni's recommended measurements, to gather their data. The MRV's were done as an additional test, in only a subset of the study participants.

I think you're on to something Patientx, I can't find anything on the use of MRV at all in the preliminary findings reports. From what I can see the 500 patrients underwent Doppler ultrasound and in this testing the healthy controls were found.

If that's the case, I am not surprised since Doppler ulrasound seems to involve much more subjective interpretation (or difficult to employ methodology) than an MRV or venogram. It would seem that Dopplar < MRV < venogram, when it comes to CCSVI detection.

dreddk I'd like to make an analogy here. Suppose we saw a man jump out of the second floor window of a building. We would probably say that's a really dumb thing to do. He could be injured or even killed by jumping from that height. But if we understand that he jumped because the building was on fire and the flames were already burning him, then maybe we would see it as not such a dumb move. In fact maybe it was the very best decision he could make in a very bad situation. The jumper doesn't know if he'll survive the fall, but he also knows that if he does nothing he will surely perish in the flames. Its like that for those of us with MS. We don't know for sure if Liberation will help us , but we know that by doing nothing we will grow sicker and sicker and then die.

If you say the studies will take a few weeks or a few months we might be willing to wait. But if you want to do another study to see if there is a correlation between CCSVI and MS and that takes 2 years and then do a small scale study to see if Liberation helps people with MS and that takes 2 more years and then a large scale study that takes 2 more years, well that's too long. For some of us that would be past our expiration date. For others our condition will have grown much worse during that time. We will have lost 6 years. Our brains will have accumulated additional damage that may be irreversible.

Certainly there are some risks with angioplasty but the risks are small, much smaller than jumping out of a 2nd floor window. The biggest risk is to your pocketbook, but your life should be worth that risk.

Now if you're just interested in pure science and rigorously following the scientific method, then maybe you wait for the studies. But if you want to live then you will say; screw the studies, just do it!

david your post re-confirms the frustration that was mentioned by david and acknowledged by myself.

Jugular wrote:I think you're on to something Patientx, I can't find anything on the use of MRV at all in the preliminary findings reports. From what I can see the 500 patrients underwent Doppler ultrasound and in this testing the healthy controls were found.

If that's the case, I am not surprised since Doppler ulrasound seems to involve much more subjective interpretation (or difficult to employ methodology) than an MRV or venogram. It would seem that Dopplar < MRV < venogram, when it comes to CCSVI detection.

Maybe, but the ultrasound was not just used to try to image the blockages or stenoses. It involved 5 measurements, and if someone met any 2 out of the 5 criteria, he or she was deemed to have CCSVI. So the person reading the ultrasound would have to get a lot of things wrong. Also, Zamboni's theory is based on the reflux (or momentary reverse flow of blood), which doppler ultrasound and MRV can measure. If there's no reflux, what becomes of the theory?

Interpreting all of these tests is subjective to a degree.

http://www.allbusiness.com/legal/legal- ... 338-1.html
(This is a particularly egregious case, but that's not the reason I posted it.)

A different 2009 study -- known as the FAME trial and sponsored by St. Jude Medical Inc. -- recommended using a "fractional flow reserve" method to gauge artery health and implied that people were getting stents they didn't need because doctors weren't measuring the blockage effectively

Before the FFR technology came into use, cardiologists relied on clinical symptoms and an X-ray assessment to determine whether a stent should be used. Such visual assessments are "notoriously variable," Aversano said. Because of that, cardiologists tend to talk in ranges of stenosis, or blockage, and use percentage figures as shorthand, he said.

"Anybody who recognizes we have a tremendous amount of [observer variability] knows that the statement that there's a 60 percent stenosis is ridiculous. We understand that it's shorthand, a way of saying this is probably significant," Aversano said.

The quotes are on page 4 of the article. I know, this is about coronary arteries, but the point is the subjectivity in interpretation.

David1949 wrote:We don't know for sure if Liberation will help us , but we know that by doing nothing we will grow sicker and sicker and then die.
!

Hi David,

I myself would get angioplasty today if I had aggresive MS. If I had aggressive cancer, I would also try unproven treatments provided there was a theoretical benefit (no crystals for me).

I just think people making a decision need to understand the reality of where the research is at.

MS seems to be a spectrum of difficult choices at this stage ie tysabri

Dreddk

jimmylegs wrote:david your post re-confirms the frustration that was mentioned by david and acknowledged by myself.

I don't see this as a matter of frustration. It's a matter of weighing the facts and the risks and making the best decision. For many people the best decision will be to do it now.

My only frustration is with the limited number of doctors who are doing the procedure.

agree, we have established frustration.

patientx wrote: Maybe, but the ultrasound was not just used to try to image the blockages or stenoses. It involved 5 measurements, and if someone met any 2 out of the 5 criteria, he or she was deemed to have CCSVI. So the person reading the ultrasound would have to get a lot of things wrong. Also, Zamboni's theory is based on the reflux (or momentary reverse flow of blood), which doppler ultrasound and MRV can measure. If there's no reflux, what becomes of the theory?

I guess where I'm coming from is that my neck Doppler was normal except for a "flutter" which is supposed to be indicative of a potential obstruction. Then I saw my MRV images where my right IJV looked, for a lack of a better medical word, askew. And here most of my problems are on my right side, with a nasty lesion on my upper C-spine that's likely to blame. So seeing is believing for me.

The difficulty I have with focusing on reflux is I don't think it has to be always present to cause damage even by adhering to pure CCSVI theory. The blockages may be there but the blood traffic might be adequately re-routed through collaterals, the external jugulars and so forth. Under certain conditions - body position, environmental, stress etc - the re-routing may not be adequate and sustained reflux happens, then abates. So detecting reflux might hinge on the right conditions and the right time.

This is why I would prefer that the research be directed at determining if repairing venous blockages detected with a venogram, produces an abatement of MS symptoms and then try to figure out why and what other means can be used to reliably detect it.