Study shoots hole in 'liberation' theory

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

Postby Cece » Thu Apr 14, 2011 6:22 am

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 :twisted:

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.
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Postby numbness23 » Thu Apr 14, 2011 6:32 am

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? :lol:
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Don't let the drain come down...

Postby 1eye » Thu Apr 14, 2011 6:38 am

"Oh yes my theory's got a hole in it and I might drown."
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Liberation » Thu Apr 14, 2011 7:06 am

griff wrote:
se1956 wrote: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.


Waiting for a clinical trial is a lame excuse. As I said many clinics have already had the opprotunity to do a normal documantation of the improvements, but they have not done it. They also had the financials to do so from the money they collected from us.


It seems a legitimate question. Do we know why?
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Postby numbness23 » Thu Apr 14, 2011 7:20 am

[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!?]
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Postby 1eye » Thu Apr 14, 2011 7:32 am

It seems a legitimate question. Do we know why?
Why don't you ask Dr. Simka?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby Liberation » Thu Apr 14, 2011 7:46 am

numbness23 wrote:
se1956 wrote: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!?]


Am I missing something, but I do not understand what is hindering some of the clinics to do better on this? Here is my understanding how it should be done:
- First, someone gets enrolled for the operation, his/her personal data is taken
- Then, he goes into the clinic/hospital for blood test, Doppler, MRV, neurological examination, etc. All the examinations are administered as they should be in any case when you visit a doctor
- Then, Angioplasty and ballooning is done
- Then, Resting for a few hours
-Then, the next day a Doppler is done and a neurological examination is done
- One month later, Doppler is done and neurological examination is done
- three months later, a Doppler is done and a neurolgical examination is done
- Six months later, a Doppler is done and a neurolgical examination is done
- One year later, a Doppler is done and a neurolgical examination is done
- Eighteen months later, a Doppler is done and a neurolgical examination is done

Why is it so hard to do? As I read here and we all know in many countries, Poland, Romania, Bulgaria, just to name a few their local people would easily go for these follow-ups as there is no distance withinn the country. Of, course, overseas patients would be out of this follow-up procedure most likely, but we could still gather data and draw conclusions on efficacy, safty and how to improve the procedure.

Just to make sure I called an IR from one of these countries to make sure whether financially and logistically this can be done. He confirmed what we can read here in many posts that the price patients pay for this operation in East Europe would easily cover these follow-ups.

So, why do we not do this????? Am I missing something????
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Postby Cece » Thu Apr 14, 2011 7:59 am

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.
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Re: ok..

Postby Kathryn333 » Thu Apr 14, 2011 8:04 am

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!!!
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Actually

Postby fiddler » Thu Apr 14, 2011 8:06 am

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
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Liberation » Thu Apr 14, 2011 8:06 am

Cece wrote: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.


Thanks, Cece. You are fully right and I agree with you, this is why I mentioned these small East Europen countries where travel is easy and their costs are very low. It could be easily done here. The greatest distance within Slovakia is probably not more than 300 miles. :)

The US is a different ball game. You have different costs, huge distances, etc.:)
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Re: Actually

Postby Liberation » Thu Apr 14, 2011 8:29 am

fiddler wrote: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


Big pharma also sponsors clinical trials. The goal of collecting this data would not be for FDA approval, it would be simply to help us decide what to do, how to improve procedure, whom this procedure would help, etc.

Why we do not have conflict of interst, today? You call up a clinic for procedure and the doctor tells you to come...

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.


That is the reason why local people should be gathered as well. It is easy here in European countries. to travel. If the original price includes follow-ups, then everyone go for it. Just about prices: In East Europe, a Doppler is about 10 dollars, a one hour consultation with a doctor (e.g. neurologist) is about 50 dollars. The CCSVI operation's cost is about USD 2,000. So, don't you think that the USD 10,000 in East Europe should cover what I outlined here? Every MS patients would benefit from this data.

3) Many neuros don't want to be involved.



I think you always have that money... :) Neurologists are also human beings, even if we sometimes think it differently... :)

I can tell you that in many cases IRs checked these clinics that I mentioned with the intention that their hospital from state money do the operations, but because of the poor data they found there they gave up on their intention.

East European countries are small countries, doctors (neurologists and IRs) are talking to each other, they know each other. Neurologists can not hear convincing info from independent IRs. I was referred to MRV by my neurologist, I did not even have to ask for it. It was done for free.

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


I would not put my life on data gathered through a survey, mainly if there is a better way that can be easily done. And do not forget that follow-ups would be needed for us who went through the procedure not just for data gathering.
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Postby BooBear » Thu Apr 14, 2011 8:34 am

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.
Three veins angioplastied.  One renewed life.  
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Postby Cece » Thu Apr 14, 2011 8:41 am

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.
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Postby eric593 » Thu Apr 14, 2011 8:52 am

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.
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