Analysing the Big Question of Now or Later

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

Analysing the Big Question of Now or Later

Postby Direct-MS » Sun May 02, 2010 4:09 pm

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Postby VeeBee » Sun May 02, 2010 4:37 pm

I suggest they have not done enough screening & treatments of patients to be able to figure out what Clinical Trials have to be done.

Minimally Invasive Treatments need to be done for those who can be treated this way. Most complicated instances would obviously need some sort of safety assessment & clinical study.

What we are talking about here is corrective treatments.
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Postby eric593 » Sun May 02, 2010 5:12 pm

I strongly disagree with this paper's position.

There are a lot more positions than the two starkly opposing possibilities that Embry presents. Firstly, just because neurologists/MS Societies might lose something if we were "fixed" doesn't mean that this is their overriding consideration in the formulation of their opinions. It may have absolutely nothing to do with their opinions. They still have reputations to uphold and imagine how self-serving and ignorant they would look if they held to an opinion that turned out to be completely wrong. At this early stage, with Zamboni developing his own scanning device for sale (which you could say puts him JUST as much under suspicion as the doctors/MS Societies that you are claiming are opposing our testing/treatment because of their own pocketbooks) you COULD suggest that this might be a hoax. When Freedman said that, all we had were unblinded results of 65 people in Italy from a guy developing a machine to sell. It COULD have been a hoax! And Freedman clarified his remark anyway and said it was taken out of context. But if you thought someone was trying to scam us with snakeoil and a gadget to sell, THIS might well LOOK like that kind of situation without further studies.

Secondly, I personally take a middle position of believing that we need preliminary objective research done to assess SOME level of effectiveness of the procedure. If people are IMMEDIATELY feeling the improvements they claim to be, it shouldn't be that difficult to have a 6-12 month, 100 patient blinded study that can objectively assess whether patients in fact HAVE objective evidence of improvements.

I believe that we DO need a minimal level of evidence before moving ahead here, especially if the healthcare system will be paying for it. We just don't support our system paying for every "good idea" that comes around because someone tells us it might be a good idea. We need PROOF that it's a good idea first and not just patient testimonials. I don't know if anyone else has been a sucker of late night infomercials, but I can tell you that my wallet is a lot lighter from believing some of the anecdotes on t.v. Not a single thing I've ever bought worked the way the people on t.v. who had tried it said it would. Not a single thing. A waste of money. Thank goodness it didn't harm my health because I believed that I'd get the same results that the other people on t.v. were raving about and bought the product.

Furthermore, I think we need research on the BEST way to treat this and this should be done concurrently with the other study. We need to know, as Dr. Sclafani writes, whether angio is enough, the BEST type of percutaneous venoplasty, what ARE the risks of re-stenosis with stenting, and whether stents are safe.

I am becoming swayed of the promise of CCSVI and its treatment. I think we've answered the question of whether MSer's have a higher prevalence of CCSVI. But what I think that we really need is some preliminary objective evidence of improvement following treatment. We need unbiased evidence that there IS some merit to this, not just because patients say that there is, but because we have satisfied an objective standard of proof. I really want to know if it's only going to warm my feet. I'd like a study to give me some idea of what I can realistically expect from this.

It might not be the long term study that we'd like, but I really think we still need some important answers before blindly having our healthcare system pick up the tab with no standards in place to accumulate data from patients being treated.

Other people may disagree with me, but that doesn't make my opinion any more or less valid than yours is. Even the DOCTORS (Zamboni and Zivadinov) are cautioning us not to proceed internationally and quickly but to WAIT if at all possible until the research is done. That's pretty much what the neuro's and MS Societies have said too. Why are people taking it differently depending on the source of the statement? The very doctors you TRUST and RELY on and who are WORKING TOWARDS OUR GOOD by studying CCSVI are saying pretty much the EXACT same things as the doctors and society that you spit on and throw under the bus as naysayers and out for their own financial gain. It makes no sense to me. If you want to throw Freedman under the bus for his single comment that he's already said was taken out of context, then fine. But I don't see anyone really saying much differently from one another. People just seem to choose different labels for them for some reason even though their position seems the same to me.

I would personally NOT agree with Embry's recommendations or opinion but tend to go along with the very doctors (Zamboni & Zivadinov) who are in the trenches who say that research should be done and we should all wait if we are not dramatically progressing until we have research results. If I'm a "naysayer", then you have to also label your heroes as naysayers too, because I'm only agreeing with their very experienced medical opinions.
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Postby cheerleader » Sun May 02, 2010 6:03 pm

Zivadinov and Zamboni also say that for those patients "out of wait" to ask for compassionate treatment from local caretakers. Zivadinov was very clear on the webinar- we need to separate research from patient care. He admitted he is a researcher. And Zamboni encourages other vascular doctors and interventional radiologists to look at MS patients' veins.

All of this is only theory until you find out what's going on in your own neck/chest. Then it becomes personal. There are more and more patients finding out they have occluded and malformed veins, and they are unable to receive treatment. This is no longer just a theory for them...
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Postby Billmeik » Sun May 02, 2010 6:06 pm

agreed with the directMS stance exactly.

Letely i've been wondering about the science that might be behind neuros certainty ms is autoimmune. I want to read up on the turning point where it was finally proven the vascular theory was wrong and the autoimmune correct.
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Postby cheerleader » Sun May 02, 2010 6:09 pm

Billmeik wrote:agreed with the directMS stance exactly.

Letely i've been wondering about the science that might be behind neuros certainty ms is autoimmune. I want to read up on the turning point where it was finally proven the vascular theory was wrong and the autoimmune correct.


Written about this a bunch on the Facebook page...it was when Rivers found he could create EAE in rabbits in the 1930s. Putnam was working on his venous theory with his dogs. The two road diverged. Putnam tried treating MS with blood thinners, and it didn't work. But doctors could cure EAE in mice with drugs. I'll dig up the link for you-- here you go...enjoy!
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http://ccsviinms.blogspot.com
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Postby muse » Sun May 02, 2010 6:27 pm

Brilliant & spot on as usual. Thanks a lot Direct-MS, dear Dr Ashton Embry!!
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Postby cah » Sun May 02, 2010 6:37 pm

I think one cannot agree or disagree to this paper, as Ashton Embry is just right in a very objective way. At least if you bear in mind that it's not about making CCSVI standard, recommenend treatment. It's just about making it available NOW to those who want it. It stays your freedom of choise whether you go for it or not.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby eric593 » Sun May 02, 2010 6:38 pm

Billmeik wrote:agreed with the directMS stance exactly.

Letely i've been wondering about the science that might be behind neuros certainty ms is autoimmune. I want to read up on the turning point where it was finally proven the vascular theory was wrong and the autoimmune correct.


Bill, there are hundreds and hundreds of articles in MS literature on MS and autoimmunity. It's always been considered a "theory", but it's all that doctors have ever known. I don't know if they have had "certainty" of it (that the immune system has viewed the body as foreign and is therefore attacking itself), but they've not been given anything better.

There have been countless papers written on how poorly EAE in mice replicates MS in humans. But it is all doctors have known. Until a new paradigm emerges that has staying power, they will continue to go with what they've been taught.

Personally, I've never thought my body was arbitrarily attacking itself. Of course I have no evidence one way or another. But doctors aren't going to suddenly change their belief because a new theory comes up. It has to be rigorously tested first to replace the old paradigm.

PS - Ashton Embry has also been a strong proponent of the autoimmunity/molecular mimicry theory.
Last edited by eric593 on Sun May 02, 2010 6:49 pm, edited 1 time in total.
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Postby NotSoSick » Sun May 02, 2010 6:47 pm

Cheerleader...would you mind re-posting information on the Putnam methodology/studies (dogs)?

Many, MANY thanks!
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Postby eric593 » Sun May 02, 2010 6:48 pm

cah wrote:I think one cannot agree or disagree to this paper, as Ashton Embry is just right in a very objective way. At least if you bear in mind that it's not about making CCSVI standard, recommenend treatment. It's just about making it available NOW to those who want it. It stays your freedom of choise whether you go for it or not.


I tend to agree with this somewhat - if people want to pay for CCSVI testing and treatment themselves, by all means, I think so long as the risks/benefits can be known and accepted by the patients, it should be available.

I don't know if the risks or benefits can be known at this point. Even in cosmetic surgery, the patient has to accept the risks and must have a realistic understanding of the outcome before surgery is allowed. If those things are known and accepted by the patient, and the patient is willing to pay for it, I have no problem.

It's just in our Canadian system, people are asking for public funding of it and I feel that further evidence of effectiveness must be shown before it's publically funded. Ashton Embry is Canadian and so he's talking about our system and having it "available" here and not as an elective, user-pay procedure.
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Postby cheerleader » Sun May 02, 2010 6:54 pm

NotSoSick wrote:Cheerleader...would you mind re-posting information on the Putnam methodology/studies (dogs)?

Many, MANY thanks!


I'm gonna let Dr. Haacke do the honors,NSS...since he's a doctor and stuff-

http://www.ms-mri.com/history.php

and yes, Dr. Embry has been a very involved proponent of the autoimmune theory and vitamin D and diet, and his following of the CCSVI research has lead to many interesting discussions with doctors, patients and caretakers involved in the venous approach. I think it speaks highly of his ability to incorporate new information and research. Everyone admits, we don't know if this is the entire puzzle or just a piece...but we need to treat patients with venous malformations now. If it was the stenosied veins of the liver or kidneys, there would be no dispute.
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Postby eric593 » Sun May 02, 2010 7:12 pm

cheerleader wrote:Everyone admits, we don't know if this is the entire puzzle or just a piece...but we need to treat patients with venous malformations now. If it was the stenosied veins of the liver or kidneys, there would be no dispute.
cheer


Yes, I have thought a lot about this. I wonder if there IS a difference or not?

Are the stenosed veins of the liver or kidneys fixed because there's proof that the kidneys or liver function better when fixed and there's clear symptoms associated with stenoses of the liver or kidney veins? Are jugular venous malformations fixed for dialysis patients or for other reasons because they HAVE to be fixed in order to continue dialysis or other treatments?

What is missing from the equation of CCSVI means fixing these veins that is not present in the other venous malformations that are fixed without hesitation or issue? THAT is really a puzzle to me. Outside of the conspiracy theories of profit motives, it seems even doctors don't seem to think this is a simple situation of a problem/fix scenario either. I would really like to understand why. IS this special/different or isn't it?
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Postby nicko » Sun May 02, 2010 7:18 pm

Here in Canada I can completely understand the situation thus far. We have no concrete proof with ccsvi. So why spend millions of tax payers money to treat people with ccsvi.

But...

There is more then enough data to show ccsvi has a lot of promise. The government should fork over the money for some very quick studies on the liberation procedure itself. Simple , compare disability scales and Mri's before and after the procedure. Even a 6-12 month trial would show enough data to prove this procedure.

The Canadian government has the opportunity to save a lot of money by looking into ccsvi. No drug companies or societies are going to fork over the money for ccsvi research. For things to move fast the government needs to step in.
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Postby cah » Sun May 02, 2010 7:18 pm

Eric, the german healthcare system is similar to the canadian, and the claim that it should be paid by public health insurance is also right. It's NOT a plastic surgery. It's not about looking good. It's an attempt of getting healthy! You get the CRABs if you're willing and your Dr. recommends it, but no one can tell you if they will help you. It's also just an attempt. Take a look at the medications for cancer: Sometimes they really help, but most of the time patients just live a few days or weeks longer. They often even cost more than MS medications. It's argued if the outcome even is significant. Yet, this ATTEMPT is covered by insurance. Following your argumentation, that would be wrong...

In Germany, there's a law that says that every attempt, proven or not, has to be covered by public health insurance if all other attempts failed and there's nothing else (proven) left - but only for fatal diseases. I never understood that. The threat of a live unbearable living isn't that smaller than death, I think.

At least the risk of ballooning really is very small. My mother just went to a cardiac catheder screening (don't know the exact english phrase). It's absoluty routine, done in a small hospital in a small village. They would have ballooned or put a stent in immediatly if they would have found anything (luckily, there was nothing). They wouldn't even have asked between diagnosis and procedure. It's just the same thing for them. It was then when I realised about what this talk about risks really is. It's really making a mountain out of a molehill.
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