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Lyon wrote:Supposedly she's open minded but there is also plenty of negative information........the other side of the story...that is being overlooked and with posting these articles I was investigating the possibility of starting a "circling the drain" thread

If you could do it in a nice way (!), that's not a terrible idea. Get all the dark side of the coin information together. Holly's death, radeck's stent migration, papers that have shown no sign of CCSVI...I wouldn't want it to be the only thing read by someone looking into this, but it is part of the picture.

There is a good and bad side to everything. Come on people...An argument can be made for and against any topic. That is democracy. My point is if one is rapidly deteriorating and has tried the medicines then as far as the alternative this is all we have. I would, however, enjoy seeing the IR's that post in these forums share their results and experiences.
Cant we just all be freinds?

"Oh yes my theory's got a hole in it and I might drown."

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[quote="se1956"]Till now this should be reliable enough:

http://www.ccsvi-tracking.com/index_timeline.php

But it should be confirmed (or not) by clinical trials.

R.[/quote

THIS survey is a real joke considering there are millions suffering from MS and there are supposedly 700 participants in this. Heck Siskin has done this many procedures on his own!?]

It seems a legitimate question. Do we know why?

Why don't you ask Dr. Simka?

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In the US many of the IRs have travelling patients. One clinic up in New England has Canadians making up 90% of its patients (this was in one of the articles from the improvement reports I've been posting)! Follow-up even when the patient is symptomatic (see the recent posts in drsclafani's thread, with the pain/swelling in neck) is difficult to achieve.

There is registry data being collected at AAC. Dr. Hubbard's registry is collecting data, before and after. I do not think the data being collected is to the extent that we would like to see. The travelling would seem to be a big part of the difficulty, how do the IRs get around that.

I remember too Dr. Sclafani posting last spring/summer of the difficulties with finding a neurologist to partner with.

The article appeared on the front page of the Toronto Star this morning.

My procedure didn't work, but I have hypoplasia. I still believe in the
treatment. What about the success stories??? Coincidence??? I don't think so!!!

It's certainly a setback for Canadians!!!

Actually, I do see several big problems with the "demand" that clinics doing the procedure should do the data-gathering regarding efficacy of the procedure so that people can make decisions about the procedure:
1) They would automatically be considered to have a conflict of interest
2) Many people are NOT going back to the same clinic for follow-up testing, either because it is too expensive and/or a nearer facility has opened up. Therefore you would not be getting a representative sample.
3) Many neuros don't want to be involved.

Some (perhaps all) of these clinics are gathering post-procedure results data, but it's not clear to me how these results would be more useful than what we can get from ccsvi-tracking.com, which some people have already denigrated on this thread (with poor reasons, in my opinion).
...Ted

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I made a comment nearly a year ago that I still stand by.

If CCSVI is the cause of or consequence of MS is irrelevant from a treatment perspective. If there is a condition that requires treatment, treat it.

No one had an issue with drugs prescribed for the various effects of this disease, from fatigue to spacisity. No one had issue with non-pharma treatments like massage and physical therapy to help.

So why issue with this treatment?

IMO, it's because correcting the blood flow alleviates a lot of symptoms very quickly. It's because we, the captive customer base, are able to make some rather significant choices on our treatments and lives.

The empowerment of this community scares those that have come to depend (financially, emotionally, substantially) on the dependence of these patients. When I can choose to live drug-free, I just impacted someone's financial statements. When I can make a choice at all, I just impacted a doctor's self-imposed importance in my life.

At the end of the day, this is freaking simple.

The condition exists.
Treat it.
Treatment makes us feel better.
Deal with that.
Move the frick on.

What is the incentive for the eastern European IR to pull this all together? The idea is to take profit already earned and use it to pay for follow-up dopplers and neurologist exams at no charge for local patients?

This is out of the belief that the profit is misbegotten, that they should not be charging the going rate when that rate goes so much further in their country?

It is still not a RCT, it does not prove much, and it's a lot of work with no benefit to the IR, only to science. This is not a charity and it is a business model, much as we would have it be otherwise.

They aren't collecting data because they don't have to. They are in business providing CCSVI treatment because there is a demand for it. They aren't in the business of research, they are in the business of opening veins for profit.

In spite of that, we DO have publications out of many of those performing CCSVI treatments. They may not have collected the information future patients might want to read, but many ARE sharing certain aspects of what they're finding. This was obvious at the SIR conference.

But they aren't doing this as researchers. They are treating us as practitioners because we ask them to and pay a lot of money, not to be research subjects, but to be patients of angioplasty.

It seems unrealistic to expect them to do more than treat the demand for angioplasty.