This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.buffalo.edu/news/releases/2013/03/021.html

They made a youtube video too: http://www.youtube.com/watch?v=94gLM4Ql ... e=youtu.be

What to make of discouraging news such as this? We've been waiting on this study since it began in 2010. It's a small study so that might explain the inability to find results (although it also suggests that the beneficial effect that might be captured in a larger trial would be minor rather than major). The techniques used were 2010 techniques so a trial begun today using experienced IRs could see better results. Patient selection could be changed.

I have no doubts from my personal experience that the procedure worked wonders for me. I see the difference every day even two years later. If this can help people, I want it to be available to the people it can help; and I want the researchers to identify who those people are so that no money is wasted, no unnecessary risk is taken, and no one lives for one moment with symptoms that could be alleviated through venoplasty.

i think this study shows what we who are living CCSVI have found. after the surgery, some poeple are helped by it, some are hurt, and some have no change.

either that or we are all secretly working for Dr S.


for people who have lived years without hope, even the smallest change is major

I am not surprised by these results as the trial did not diaganose all stenoses and only treated stenoses in some areas (neck?). It is not trial size which is the problem but trial methodology.
All I have learnt from this report is that you need to find a clinic which uses catheter venography (CV) and intravascular ultrasound (IVUS) to investigate all major veins outside the skull. All stenoses need to be fully de-stenosed and blood flow checked a month after the procedure. I have said (along with some others) that CV and IVUS are requirements for diagnosis. Sadly the Buffalo Premise study used a sub-optimal diagnosis methodology and then failed to treat all veins.
Cece you and I are in a small group who were diagnosed and treated by an expert vein plumber. We can testify to the long term benefits of a full de-stenosis procedure. Many others have spent their savings on sup-optimal procedures, very sad.
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Absolutely nasty surprise.. "more disease activity with treated patients"

Well, my wife had really optimal benefits and been almost symptom free quite long time.. next june it will be 3 yrs. Good bye fatique, weakness, balance and spasticy symptoms, and please.. don't come back.

I suggest that BEFORE anyone gets bent out of shape over the PREMISe study result , and the U of B ...... please carefully read the news release at least twice ........

There is more good - if not great - information contained within ,provided to pwMS.

If I was a Neurologist ...... or Big Pharma ....... I wouldn't be too quick to point to this study as supportive of their anti-CCSVI position.





I look forward to reading all of the gritty details


In life , you can succeed if and when you develop the ability to :

See the Truth in the Lie ...... and ..... The Lie in the Truth .....




I'm really looking forward to cocktail hour tonite ! Well done U of B .


MrSuccess

Subjects in this study were chosen using noninvasive imaging, but the diagnosis of CCSVI was confirmed during catheter venography using IVUS. The treated veins were the Internal Jugulars and the Azygous. BNAC did use the optimum diagnostic technology, and also used what is considered to be the standard CCSVI treatment protocol.

The most disturbing finding in this study was that the treated subjects faired worse than the sham subjects. Of course, this was a small study, and as the researchers explicitly state, further study is absolutely necessary.

Here's a link to the short video featuring the two lead researchers:

http://youtu.be/94gLM4QlU_A

There certainly is still a lot left to learn… So much potentially vital information has been lost due to the lack of long-term tracking of CCSVI treatment patients. Of the 30,000 patients treated, we only know the outcomes of a tiny percentage. It's really a shame…

_________________
Marc
www.wheelchairkamikaze.com

Do you really think any of the anti-CCSVI Neurologists are going to "bite " on this study ?

To do so ..... would be to AGREE that the procedure is SAFE.

A roadblock the Neurologists have been carefully erecting. And hiding behind ......

Trust MrSuccess on this one. They won't touch this study's results with a 10 foot pole.

They will interpret it as does MrSuccess .....


I wasn't born yesterday .



MrSuccess

Someday, when the entire paradigm shifts into accounting for variability of stenosis, on a week to week basis, then we'll have more concrete results that support the theory.

As it is now, they just dont get that, and are randomly hitting whatever mole pops out of the hole.
Yeah, some get treated and walk away happily ever after, us stentees that can say that, going on four years, ARE the proof. But of course stents are vicious little unproven critters likely to drop us all dead at a moment's notice, I get all that so no preaching required. Absorbable stents, gonna hit the market soon.

For the other high percentage of patients getting failed angioplasties at a substantial cost, by clinics who could care less about tracking their success and failure rates, well buyer beware. Forget the name on the shingle, ask for patient tracking results. You will get few responses, and that is the answer.

Stenosis are variable. They will elude all but the most rigorous and continuous testing. Without that data, these spurious studies are founded from the start on a faulty premise, that what they see NOW, was there yesterday, and will be there tomorrow. All this gold standard talk is only as good as the particular moment in time it was used, let's just hope some Dr's will step outside of the box, which is already outside of the box, because that is what it is going to take.

All else is noise.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

http://www.medpagetoday.com/clinical-co ... osis/37908

The stenoses in CCSVI are resistant; there are specific techniques (high pressure balloons, accurate IVUS sizing) that can be used. We need to see that the IRs can perform the procedure with lasting hemodynamic effect before the next trial is launched if the results are to mean anything.

This trial does not tell us if open veins have any effect on MS because the veins were not successfully opened.

Without questioning the scientific integrity of this study, you have to wonder if the results would have been significantly different if the 10 patients had been treated by an IR with experience in treating CCSVI. The key point you bring out here strongly suggests, as you say, that treatment was not successful in improving blood flow.

I know Dr. Sclafani has made the point several times that it took considerable time before he was effective in identifying and treating problems and it is clear from his thread here that he is still learning.

While Dr. Siddiqui may have experience with treating CCSVI beyond the 10 patients treated here, I am not aware of that and think this is crucial.

Sadly though, I think this study is going to be a major roadblock in getting support for further research.

A unfortunate aspect of this is that some 30,000 people have been treated with little data collected to assess the efficacy of treatment and then the whole thing goes up in smoke based on what seems to have happened when 10 patients are treated or possibly under-treated.

A further outcome of this study is that patients are going to have to find a way to fund a study that parallels what was done in Buffalo, even better if some of the same treated patients could be included to assess how well they were actually treated.

It isn't likely that the government or anyone else is going to step forward to do additional research on CCSVI between this study and the COSMOS study which have now "officially" buried CCSVI. Marc and Dr. Sclafani have a bridge to sell anyone who thinks groups like the National MS Society will be putting any more money into CCSVI research.

If patients that underwent the procedure had definite differing results(even if worse) from placebo patients, isn't that further evidence that CCSVI definitely is related to MS?

Certainly not to a Brainiologist!

when AAN comes there must be some negative CCSVI studies. Last year it was the same by dr. Zivadinov. After AAN they will talk about CCSVI again positively... strange world.

This Buffalo's video about premise study.. it seems that their conclusion is clear, check the first text in video, message is clear. I find this conclusion quite disturbing, based on very, very little study. Just like their conclusion in 2011, that CCSVI is concequence of MS, based on their doppler study.

http://www.youtube.com/watch?v=94gLM4QlU_A&feature=youtu.be

This is depressing. When Doppler US studies couldn't replicate Zamboni's findings it was because no one could do them right and clinical trials were needed. Now that clinical trials also fail to replicate his claimed results, once again it's because the researchers didn't do them right. The other conclusion is a bitter pill to swallow.

I'm glad I had the procedure when I did because 2.5 years later I'm still doing great and shudder to think where I'd be if I didn't. My favorite improvement, because it is so easy to demonstrate, is that my planter reflex on my right foot returned to being normal, when for ten years it was upward. And now I'm just about to do a workout that i couldn't dream about doing previously.

Was this all some sort of freak occurrence? I think my placebo effect would have worn off by now. And could a placebo effect change an involuntary reflex?

I'm surprised by the results of this study. You would think at least one person in the control or study group would report an improvement, even if placebo.

I remain hopeful that the larger Buffalo study due out next year might find different results.