This Is MS Multiple Sclerosis Knowledge & Support Community

I just posted this to my blog, in response to the massive waves of misinformation and mistaken assumptions that are flooding the Internet chat rooms and forums.

Comments please.

http://www.wheelchairkamikaze.com/2009/ ... ating.html

Yeah unfortunately any post ANYWHERE on the net now becomes replicated so fast there's just no way to control it. Thanks for taking the time to put out a concise resource to point to. I read the entire thing and cannot find anything per se I would disagree with on a factual basis, opinion maybe but that aint worth much lol.

Very well done, and something I will point prospective patients to, to provide balance. After all, we have nothing to hide, much to discuss, much to discover, and tomorrow can't get here fast enough!!

Mark.

You have outlined in your post, basically the same thing that I have found. A lot more research needs to be done. Stents in veins is relatively new and can be dangerous.

This is not like a trip to the dentist.

mohzi wrote:This is not like a trip to the dentist.

Well, I had a trip to the dentist that went completely wrong when a piece of the root of a wisdom thooth that was removed surgically broke off and slipped into my sinuses. Some hours later I laid on a surgeons table, having my cranium cut open through my mouth to remove it... really was a nasty thing, but healed quickly.

There's risk in everything. The question is, is it calculable and bearable? This questions can only be answered through research. But thruth is: There won't be any treatment without any risk - there isn't any for anything yet. But I think it's a legitimate question whether radeck's complication was an accumulation of bad luck or could have been foreseen (maybe with more research). On the other hand, I really can understand anyone suffering from MS who don't want to wait. Oh dear, it really is a dilemma.

Nice post, very well done.

One question I wanted to ask - is 100% of MS pateints really a red flag out of such a small sample size?

The rather small group of patients studied to date is often pointed out by skeptics who wish to dismiss the theory/studies, but those same skeptics seem not to consider this when they're pointing to the 100% number.

Now, if Zamboni had studied several hundred people and still reported 100% match between the parameters and the MS-diagnosed, I might wonder ... but I don't think it's that shocking in the small group in question.

Also, if they were rigorous in selecting their MS patients, deliberately avoiding borderline diagnoses and new cases, it becomes even less surprising to me.

Nice job, Marc. Very well-written, concise and on point.

Dr. BB Lee addressed the geographic incidence question at the Bologna conference- he stated that venous malformations occur in Caucasians- who also happen to settle further from the equator. Also, women suffer from venous insufficiency at a higher rate than men. These are known, studied facts in relation to other venous diseases, but have not been written about in CCSVI, since we've only known of this pattern for a year. Dr. Zamboni's team is currently studying EBV and a variety of other external influences (smoking/fats/obesity/Lyme/Cpn) in endothelial disruption and exacerbation of stenosis and reflux. But there are no papers available today. Therein lies the problem, and the flights of fancy in the current speculation. We just don't have the research today (Check back tomorrow for the Liberation Procedure paper.) Dr. Zivadinov stated that he believes there will be thousands of papers studying CCSVI authored in the next ten years. But that's a while off. This may be the first time in medicine that the patients request treatment before the papers are printed...and that's the good and bad thing about the immediacy of the internet.

Jeff saw his closed veins and all those crazy collaterals and made a personal decision to deal with it now. He is glad he did, but each individual needs to understand their own risk/benefit ratio. Just as every MS patient is different, how they approach their disease will be different. And type and location of stenosis will affect this decision, too. It is not the same for everyone, and the treatment approach will need to be tailored to the individual situation. Some will find ballooning sufficient, others will choose to have stents. Some will have no treatment options for awhile-some will wait until there is more research. The individual needs to assess and decide.

Trying to keep it factual on the Facebook page, and correcting erroneous posts over there as much as I can, but it's a full time job I don't want Appreciate the help keeping it real, Marc. Thanks!
Joan

Marc, thank you! That was honest, factual yet hopeful. Beautifully written.
Full of information.
-MamaGirl

Marc, that was a fantastic post. I think you summed it up perfectly. Thanks for that.

I really liked it Marc! Really superb.

If I am not mistaken though, the first installment of JNI replication is due out in weeks.

I appreciate the mention of the neurological community and pharma community objecting in such matter of fact terms also. It is simply unrealistic to imagine that they could accept this information gladly without having to do some serious stepping back and re evaluation of everything they believe. No human being likes to be forced into that situation, it is human nature.

thanks for a good reference point!

WOW! This is going to be one of the classics of ccsvi-writing. Best start you can get - cool!

Hi, you said:

"Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated."

I think Zamboni's results said up to 50% of the jugular blockages needed to be redone, not the azygous blockages, and I wonder about the multiplied risk in the liberation treatment. Why is it more risky the next time and even more risky the time after that? Just curious.
[/i]

I understand it as:

r is the risk of 1 operation, R is the total risk

1 operation: R = 1 * r
2 operations: R = 2 * r
3 operations: R = 3 * r
...
n operations: R = n * r

Each time the risk is the same. But it is multiplied with the number of operation. But, if r tends to 0, R is not that high compared to the benefit...

sou

Very well written Marc. A breath of fresh, cautious air. We are all looking forward to more "evidence, evidence, evidence". As a CCSVI activist I want to help push forward the trials that will provide more evidence. There are two relatively easy things that could bring more evidence.

1. Every MS patient, as part of his/her periodic MRI, should be imaged by Dr Haacke's protocol (that is if his pilot study has merit)

2. The doppler sonography techniques should be spread to more and more hospitals and MS centers. There should be serious training on these techniques. This is a 0 risk procedure. MS patients may elect to have the sonography. I certainly would.

These two suggestions would gather a huge amount of evidence on the correlation of CCSVI and MS without a lot of funding or prolonged clinical trials.

whyRwehere wrote:Hi, you said:

"Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated."

I think Zamboni's results said up to 50% of the jugular blockages needed to be redone, not the azygous blockages, and I wonder about the multiplied risk in the liberation treatment. Why is it more risky the next time and even more risky the time after that? Just curious.
[/i]

An easy, albeit very dramatic, way of looking at it is to imagine playing a game of Russian Roulette with a six chambered revolver.

By placing a bullet in only one chamber, that leaves five chambers empty, making the odds of blowing your brains out on anyone attempt 5 to 1 against the unfortunate outcome. However, if you repeat the exercise six times, your odds are better than even money of winding up with a huge gaping hole in your head.

And yes, I have done a fair amount of gambling in my time, though I've wisely shied away from Russian Roulette...

...looking at it is to imagine playing a game of Russian Roulette with a six chambered revolver.
...

That dramatically reduce the chances
If ballooning is 1/6 for complication I really start to worry

Let's make the chamber a 200 bullets chamber, no?