This Is MS Multiple Sclerosis Community: Knowledge & Support

That's good to hear Joyce. Thank you very much for stating that. It makes me feel good. I am actually in the process of updating my blog right now! Tell Steve I'm glad he like's my blog! . That makes me feel really good!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

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Ryder35,
There is thinking on this. One possibility is the ABX dissolved the blockages.
Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

A venous stenosis (lit. "narrowing") is not like a clot or blockage we see in an artery. It is a defect in the vein, whereby it is thinned down, twisted or crimped. Jeff's jugulars were constricted due to a congenital narrowing and lack of space in his neck. There certainly may be some cases where spirochetal infections are implicated.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Apparently a few people have had an allergy to the nickel in the stents which can then cause restenosis: although some studies say yes and some say no. Roughly 7-10% of the US population is allergic to nickel (which is in the stainless steel stent).

Frank,

I've tried figuring these numbers many different ways, and I still don't understand how the authors got these results. First, I'd like to know how they are defining the rate of relapse (.41 before treatment, .25 after treatment). Most drug studies for MS use mean annualized relapses as a primary measure. Are they totaling the number of relapses for the year, and dividing this by the number of patients?

Then, how are they getting an odds ratio (OR), from this? Are they using these relapse rates as the probability of having an attack? If this is the case, then I calculate the odds ratio as:

Odds of having attack before procedure = .41/.59
Odds after procedure = .25/.75

So the odds ratio = (.41/.59) / (.25/.75) = 2.08

which obviously is different from the odds ratio given in the paper.

The only thing I can figure is that they are using some other correction, possibly to account for the small sample size.

This is only the preliminary report for other vascular docs, and as Marie said, not all the numbers or how they achieved them are in...but when I looked up other medical trial papers with an odds ratio of 4.4 and CI of 95%, the parameters of 1.5-13 gave the same result...so this equation is part of the chart, and the numbers, for now, represent unknown variables.
more will come,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

ok, sorry I thought I read on here somewhere that people who had these put in had to be monitoered for life and there could be future complications years later.

I am pretty sure I have an allergy to nickel because there is certain jewlery I simply can't wear because my finger will start to itch and it gets red. I would assume they test beforehand to see if we are allergic right?

They don't test you, they ask you, so be prepared to know the answer if you suspect you're allergic. If I was concerned, I'd start with my GP and find out how to get tested.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Chris is right these have been around since the 90's, so they are something there is some years of data on showing a positive record in the ways they had been applied to date.

However they are a permanent part of your body once installed, they do need monitoring and in cardiac patients they some times need to be re stented (stent in a stent) or need to be re-ballooned nearby. Using stents is relatively "safe" but it does carry risks so you need to ask all these kinds of questions to your doctor and get full understanding and disclosure.

IF it turns out CCSVI is MS then this is what we will all get for treatment, but until that is proven it remains an unknown exactly how the risks vs benefits weighs out.

For me personally it was still an easy decision. No available treatment and a good leg and arm to save, along with personal belief there is enough here to support this model---NOT because of the small number of studies so far but because of the related supporting material such as the slow perfusion in the brain, the hypoxia, the lesion similarities etc etc. taken with the fact I had clear and very severe stenosis and I was ready to accept the potential complications for the chance of success.

But each person deserves the right to make that determination for themselves with full disclosure so get that for yourself and do not assume we have all the information on this forum....

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