IT/Buffalo study pub--significant improvement after PTA

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

Postby thisisalex » Sat Aug 13, 2011 8:09 am

scorpion wrote:
frodo wrote:
scorpion wrote:
frodo wrote:
scorpion wrote:While I admit these results are interesting how in the world can you make these "key points" after all the recent studies show no correlation between CCSVI and MS??


It is clear at this point that the other studies were flawed. In fact, negative results published to date are inconsistent among them, going from finding no CCSVI in any patient to find CCSVI in nearly every patient including healthy people.

Besides, performing wrongly a test in a study can lead to a negative bias, while performing specially well the test will not introduce a positive bias. At this point I think we can consider the results of Zivadinov the correct results and any other study that contradicts this as a lack of expertise of the doctors performing the tests.




:roll:


Should I explain you slowly the argument?




Nope I got it. Any studies not showing positive results are flawed. Pretty simple concept.


scorpion,

Let's say i have a piece of gold in my garden.
there are 10 people looking for it
9 of them do NOT find the gold
1 of them finds it

Now, do you believe the other nine people when they tell you: there is no gold in Alex's garden!
Or do you believe the one showing you the gold in his hands?
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Open minds needed

Postby ScutFarkus » Sat Aug 13, 2011 9:47 am

scorpion wrote:Nope I got it. Any studies not showing positive results are flawed. Pretty simple concept.

Cece wrote:If you genuinely believe that, you must not think much of us.


Well, scorpion is accurately summarizing frodo's statement:
frodo wrote:At this point I think we can consider the results of Zivadinov the correct results and any other study that contradicts this as a lack of expertise of the doctors performing the tests.


This statement clearly represents faith and not science: there is no logical basis to flatly reject all contradictory studies. Doing so is letting belief trump logic.

Ultimately, all of the various results do have a scientific explanation. Some are likely statistical anomalies, some are due to "lack of expertise", some are due to bias, and some are accurate (even if they may also suffer from a few of these same factors). Given how little is known right now about CCSVI and MS, I think it's likely that some of the "correct" results will initially appear to be contradictory. The initial theory, that it is CCSVI and not the immune system that causes MS, is currently looking very shaky due to all the contradictory evidence. But there are countless other possible theories that explain the evidence. At this point we can't get so attached to a theory that we blindly reject contradictory evidence.

Cece wrote:I've seen studies going both ways. I've seen studies that don't have much to do with CCSVI (such as this latest genetics study) interpreted as if they do.

But the latest genetics study does have a relationship with CCSVI. I can't count the number of times I've seen people on these boards declare that CCSVI proves that MS is not an immune system condition. The genetics study strongly suggests that it is. This doesn't disprove all of CCSVI, of course, but it casts doubt on some CCSVI-related theories.

frodo wrote:Besides, performing wrongly a test in a study can lead to a negative bias, while performing specially well the test will not introduce a positive bias.

Not entirely sure what you mean here, but if you're claiming that "lack of expertise" in performing a test always results in negative bias, you're clearly mistaken. Doing tests poorly results in unreliable results, but it's not true that such errors always bias things in the negative direction. For example, it's my understanding that detecting CCSVI via ultrasound is a bit of an art, causing some people to see it everywhere and others to see it nowhere, e.g. both positive and negative biases are possible.

/Scut
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Postby Cece » Sat Aug 13, 2011 11:04 am

The initial theory, that it is CCSVI and not the immune system that causes MS, is currently looking very shaky due to all the contradictory evidence.

I liked how Dr. Dake phrased it back at ISET in January, that it is worth investigating if CCSVI is a promoter of MS.

Some of my ideas on CCSVI do veer from Dr. Zamboni's ideas laid out in the 2007 'Big Idea' paper. I see hypoxia as playing a significant role, as discussed briefly at ISNVD and as seemingly present in my own case due to what seems to be relief from hypoxia upon venoplasty.

And as MarkW would have us remember, some of Dr. Zamboni's newer ideas (such as seeing CCSVI as a syndrome) supplant his older ideas.
I can't count the number of times I've seen people on these boards declare that CCSVI proves that MS is not an immune system condition.

It was Dr. Cumming who gave me the word 'dovetail' last fall at my appointment, which I thought was such an apt descriptor I've been using it ever since. The idea is that the two theories dovetail together nicely, with CCSVI explaining the unknown cause to the BBB disruption and why the immune system gets active in the CNS in the first place. But what the immune system does after that is a big concern. I am worried that, once started, it could be that this process cannot be stopped. I don't know if that's true or not.
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Postby MrSuccess » Sat Aug 13, 2011 11:57 am

quoting the medical experts on their CCSVI - MS revelations and opinions seems to be lost on certain TIMS posters ...

this is understandable ..... as there now is an enormous amount of CCSVI information to absorb .

therefore ..... it is helpful to have certain well informed TIMS members .... " gin " [ I like gin :wink: ] the information ..... and make it more understandable ...... to those that do not understand "doctorspeak ".

Correct me if I am wrong ....... but as far as I know ...... Dr. Zamboni is on record as accepting that MS is an autoimmune disease.

Dr.Zamboni also recommends those on DMD's ...... stay on DMD's.

So for now ......... Big Pharma can relax ....... but they fear for their pocket book down the road .

Show me some foolproof dissolving stents ....... and I'm buying in. :idea:




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Re: IT/Buffalo study pub--significant improvement after PTA

Postby drsclafani » Sat Aug 13, 2011 12:34 pm

cheerleader wrote:NEW published study:
Ferrara/Buffalo treats 15 Italian and American patients with CCSVI using PTA (angioplasty)

Abstract
Objectives
Chronic cerebrospinal venous insufficiency (CCSVI) is associated with multiple sclerosis (MS). The objective of the study was to see if percutaneous transluminal angioplasty (PTA) of duplex-detected lesions, of the internal jugular and/or azygous veins, was safe, burdened by a significant restenosis rate, and whether there was any evidence that treatment reduced MS disease activity.

Design: This was a case-control study.

Materials: We studied 15 patients with relapsing–remitting MS and duplex-detected CCSVI.

Methods
Eight patients had PTA in addition to medical therapy (immediate treatment group (ITG)), whereas seven had treatment with PTA after 6 months of medical therapy alone (delayed treatment group (DTG)).

Results
No adverse events occurred. At 1 year, there was a restenosis rate of 27%. Overall, PTA was followed by a significant improvement in functional score compared with baseline (p < 0.02). The annualised relapse rate was 0.12% in the ITG compared with 0.66% in the DTG (p = NS). Magnetic resonance imaging (MRI) blindly demonstrates a trend for fewer T2 lesions in the ITG (p = 0.081), corresponding to a 10% decrease in the ITG compared with a 23% increase in the DTG over the first 6 months of the study.

Conclusions
This study further confirms the safety of PTA treatment in patients with CCSVI associated with MS. The results, despite the significant rate of restenosis, are encouraging and warrant a larger multicentre double-blinded, randomised study.

http://www.ejves.com/article/S1078-5884 ... 2/abstract


great..
thanks cheerleader


as i said,

traction is evolving, rebuttals are being answered.

two years to mainstream acceptance baring a surprising, incomprehensible outcome result of a well designed study.
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Postby 1eye » Sun Aug 14, 2011 12:48 pm

Someone recently pointed out that the idea that CCSVI is common in healthy controls is at odds with the idea that CCSVI is not present in anyone.

It is puzzling to me why some people and some writings I see here are responded to at all, given the high quality of the others. ad nauseum, ad absurdum

Dr. Zamboni's studies have been small, well documented, thought- and further research-provoking. Opposing viewpoints have been promoted using similarly small studies that are puzzling, negative, contradict one another, and do not lead to further inquiry. They seem designed to stop, rather than start discussion. If he has any kind of idea that he is being persecuted, it is well-founded.

The topic here is another of his papers. Once again he is the only researcher with guts enough to publish a lesion count. I am not a statistician, but I am confused that such a high significance is given to one result, while another is not significant. Perhaps it is because of the magnitude of the lesion count even in a single patient being quite high? Any math whizzes want to weigh in?
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Re: Open minds needed

Postby frodo » Sun Aug 14, 2011 1:35 pm

ScutFarkus wrote:
Not entirely sure what you mean here, but if you're claiming that "lack of expertise" in performing a test always results in negative bias, you're clearly mistaken. Doing tests poorly results in unreliable results, but it's not true that such errors always bias things in the negative direction. For example, it's my understanding that detecting CCSVI via ultrasound is a bit of an art, causing some people to see it everywhere and others to see it nowhere, e.g. both positive and negative biases are possible.



What I mean is that if somebody not well trained in special dopplers conducts a clinical trial probably he will not found anything.

If during a blinded trial somebody finds a positive correlation it means that the correlation really exists (inside the statistical p value) AND that the doppler technician is doing properly his job.

when a negative is found in the same situation it means that the correlation does not exist OR the doppler technician is doing a poor job.

It is obvious that the proposition with the AND inside is more restrictive than the other and when found, it should have more weight for extrapolate a conclusion.
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Re: IT/Buffalo study pub--significant improvement after PTA

Postby Cece » Sun Aug 14, 2011 2:00 pm

drsclafani wrote:great..
thanks cheerleader


as i said,

traction is evolving, rebuttals are being answered.

two years to mainstream acceptance baring a surprising, incomprehensible outcome result of a well designed study.

We have not been through anything like this before, I am happy to hear from someone who has experience with change in medical practice such as this.

Two years until mainstream acceptance! It's hardly any amount of time at all. I had assumed longer until Dr. Sclafani kept talking about traction.
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re

Postby jean-la-grenouille » Sun Aug 14, 2011 2:28 pm

Science is going forward even if the process is a bit shaky. This only matters.
No need to argue.
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Postby 1eye » Sun Aug 14, 2011 2:34 pm

Regardless of your logic which I do not argue, it is not really an art form. Using Doppler ultrasound to screen for CCSVI can mislead and be misread, but I think most of the people including neurologists and people doing the trials, have acknowledged what Dr. Zamboni has said in published studies, that unique knowledge and techniques are required. It is not a good situation, and things are not helped by flat-earth deniers who get too much press, so I think if some enterprising ultrasound vendor will publish a good reference, they will make a bundle.

Myself, I have "SPMS", whatever that may mean, and I have had the procedure. I had had no ultrasound radiology prior to the catheter. I do not think that was a mistake. Neither do my neighbors, who saw how I was a year ago. I don't recommend what I did to anyone, but my family agreed with it.

You can screen (with training) via Doppler, but the "magic beam" (X-ray fluoroscope) will definitively diagnose.
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Postby cheerleader » Sun Aug 14, 2011 3:15 pm

Glad we have another paper published. Traction is right! Can't believe it's been 2 years, Dr. S.

Jeff's 28 months out, no new lesions, no progression of MS or new disabilities. And, like the people in this study, he stayed on his DMD before, during and after his procedure. That was what Dr. Zamboni suggested, and he listened. He was on copaxone for 2 years prior to his angio, but that didn't touch his fatigue, heat intolerence, spasms or bladder issues. Only venoplasty helped that. Future treatment may involve a combo platter of drugs and angio, depending on patient profile----nothing wrong with that if this dread disease can be stopped or slowed.

Interesting to see that the delayed treatment group continued to have relapses and new lesions, despite being on DMDs, but those who received PTA (with the exception of one patient) did not. Something there. Let's hope the Brave Dreams study of over 500 brings more knowledge.
onward!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Sun Aug 14, 2011 10:06 pm

nice " combination " study. The procedure was done in Italy .... and the results complied in the Buffalo,NY.

Once again , Professor Zamboni gives pwMS such great hope.

I do hope we get to read the FULL report in detail ... some time soon.

As much as larger sized study's seem to be the goal ..... I do in fact .....like smaller group's ...... I see this as a great advantage , in that each patient can be much more closely monitored .

But still .

The time is NOW for both the NMSS and Italian MS Society ... to step up and FUND Drs. Zamboni and Zivadov - FULLY- .

It looks like the grassroots need to once again ..... exert their will. :idea:


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Postby Cece » Sun Aug 14, 2011 10:15 pm

cheerleader wrote:Future treatment may involve a combo platter of drugs and angio, depending on patient profile----nothing wrong with that if this dread disease can be stopped or slowed.

I wonder too about the opportunities for new drugs, based on the new understanding of the disease and the importance of the vasculature.

Always great to hear your husband is still doing so well.

jean-la-grenouille wrote:Science is going forward even if the process is a bit shaky. This only matters.
No need to argue.

Yes, exactly, with maybe some fits and starts and imperfections, but all in all, science is moving forward.
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Postby luca75 » Mon Aug 15, 2011 3:31 am

Hi everybody,

my name is Luca I'm writing from Italy (Pisa) and I've just registered to this very interesting and stimulating forum.

Does anyone know something about the inital rate of relapses associated to the two groups ? I think it's importanto for the end sudy comparison to have homogeneus initial paramenters. Thank you !!!
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Postby MrSuccess » Mon Aug 15, 2011 12:47 pm

.... over in the " drug pipeline " section of TIMS ..... Rainer has brought forth a very interesting gene therapy article.

what Mr.Success finds most telling was that these patients actually got much sicker - self described as the worst flu - ever in their lives ...

then the great results .

I believe this is called " herxing " ?

hmmmm ..... this has Mr.Success wondering if those few cases of pwMS reported as doing worse after CCSVI treatment .........
may be having a similar situation ?

Does this explain the singular case Dr.Zamboni reported ?

Either way ..... the gene therapy story for treatment of leukemia ....is certainly cause for excitement.

Note the similar situation experienced by these medical pioneers .... a lack of funding to explore and expand their great scientific work .....

Sound familiar ? :twisted:




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