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

Postby Loobie » Tue Jul 28, 2009 7:41 am

mormiles wrote:Lord have mercy! Beyond tiresome! But I've added a new hero to my list---Lew. I've been reading to my husband Steve some of Lew's comments on this thread and from his website. Steve really identifies strongly with you Lew, but he's not that verbal. Thanks for giving him a voice. And thanks for an infusion of that fighting spirit.


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! 8O :D. That makes me feel really good!
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Postby chrishasms » Tue Jul 28, 2009 9:03 am

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Last edited by chrishasms on Sun Dec 06, 2009 12:00 pm, edited 1 time in total.
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Postby notasperfectasyou » Tue Jul 28, 2009 12:32 pm

Ryder35 wrote:One possibility has occured to me:

MS is a collection of symptoms that may have differing causes. What if the symptoms are caused by stenosis but different things can cause the stenosis to occur. In other words the stenosis is not the final answer just another step along the route. We still do not know what causes the stenosis do we? Maybe other deseases such as Lyme can also cause stenosis and therefore similar symproms. It would be interesting to start testing people who were misdiagnosed with MS for stenosis.

What about those who have got better on antibiotics, do the have or had stenosis? did they ever have MS?


Ryder35,
There is thinking on this. One possibility is the ABX dissolved the blockages.
Ken
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Postby cheerleader » Tue Jul 28, 2009 12:42 pm

notasperfectasyou wrote:
Ryder35 wrote:One possibility has occured to me:

MS is a collection of symptoms that may have differing causes. What if the symptoms are caused by stenosis but different things can cause the stenosis to occur. In other words the stenosis is not the final answer just another step along the route. We still do not know what causes the stenosis do we? Maybe other deseases such as Lyme can also cause stenosis and therefore similar symproms. It would be interesting to start testing people who were misdiagnosed with MS for stenosis.

What about those who have got better on antibiotics, do the have or had stenosis? did they ever have MS?


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


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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby prof8 » Tue Jul 28, 2009 3:29 pm

chrishasms wrote:Guitarguy....

Look up stents on the internet and you will see they have been using them for a while in different areas on the body.

In my research the only thing I have seen anyone worried about is the first 90 days or so after they are placed. After that point the body actually grows new vessel/vein material right around them and actually incorporate them into the body. They just need to make sure nothing sticks to the stent until they do so that is why they have all the anti coagulants.

I would think this may have the same risk as something like angioplasty.


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).
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Postby patientx » Wed Jul 29, 2009 4:00 am

Frank wrote:I'm currently reading through the full text of the "liberation procedure" paper and have a problem understanding the math at one point.

On page 75 (figure 3) it is said to show that the relapse rate after intervention decreased more than 4 fold (exactly 4,4). The relapse rates were 41% in the year pre-treatment and 25% in the year post treatment.

I would state that the relative change in relapse rate pre->post is 39.02%:
41 = 100%; The change is 41 - 25 = 16; 16 = x%
x = (100% / 41) * 16 = 39.02

What calculation gets to the 4.4 fold decrease in relapse rate?

Thanks
--Frank


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.
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Postby cheerleader » Wed Jul 29, 2009 7:10 am

cheerleader wrote:
OR=4.4 (95%CI 1.5-13, p=0.0072)
OR is objective response rate, showing 4.4 fold decrease
CI is confidence interval of 95% (sampling of the mean)
at 95% confidence interval, 1.5-13 = 4.4 odds ratio


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
Last edited by cheerleader on Wed Jul 29, 2009 7:38 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby guitarguy » Wed Jul 29, 2009 7:37 am

chrishasms wrote:Guitarguy....

Look up stents on the internet and you will see they have been using them for a while in different areas on the body.

In my research the only thing I have seen anyone worried about is the first 90 days or so after they are placed. After that point the body actually grows new vessel/vein material right around them and actually incorporate them into the body. They just need to make sure nothing sticks to the stent until they do so that is why they have all the anti coagulants.

I would think this may have the same risk as something like angioplasty.


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.
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Postby guitarguy » Wed Jul 29, 2009 7:39 am

prof8 wrote:
chrishasms wrote:Guitarguy....

Look up stents on the internet and you will see they have been using them for a while in different areas on the body.

In my research the only thing I have seen anyone worried about is the first 90 days or so after they are placed. After that point the body actually grows new vessel/vein material right around them and actually incorporate them into the body. They just need to make sure nothing sticks to the stent until they do so that is why they have all the anti coagulants.

I would think this may have the same risk as something like angioplasty.


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).


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?
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Postby Loobie » Wed Jul 29, 2009 8:15 am

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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Postby mrhodes40 » Wed Jul 29, 2009 9:11 am

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.


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....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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