What's not being said?

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

Postby jimmylegs » Sat Aug 06, 2011 3:52 pm

hi all,

i believe every sticky but one in the list, is there at the request of the membership.

the tracking project sticky is definitely easier to find than individuals' posts.

i will look into whether i can split and merge sticky threads.

cece will you propose a short list of sticky titles and which current stickies belong with each title? let me know!

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Postby dania » Sat Aug 06, 2011 4:15 pm

Scarring is not a old blood clot. Dr Siskin told me that every time you run the catheter in the vein it does a little damage, hence scarring.
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Postby pklittle » Sat Aug 06, 2011 4:46 pm

dania wrote:Scarring is not a old blood clot. Dr Siskin told me that every time you run the catheter in the vein it does a little damage, hence scarring.


He told me the same Dania.
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Postby Cece » Sat Aug 06, 2011 5:20 pm

I don't mean this to be hurtful, dania, you've had enough of that.
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Postby marcstck » Sat Aug 06, 2011 10:00 pm

I was wondering why my ears were buzzing, and then I saw this thread…

It's pretty well been established that voluntary self-reported outcomes of medical procedures generally skew towards the positive. Again, this is due to simple human psychology, people who perceive themselves as "winners" are much more likely to go public then those who see themselves as "losers". This is especially so when there is a very vocal community of winners, and there is significant positive reinforcement to be had by reporting positive outcomes.

Think of it this way. Suppose you buy a $100 raffle ticket for a chance to win a dream vacation. If you happen to win that dream vacation, you'll very likely tell every person you know, and probably a few you don't know. If you don't win the vacation, it's likely the only people who will know that you ever bought a raffle ticket are those you told before the raffle drawing was held.

This problem extends to the CCSVI tracking site. Again, voluntary patient reports, not verified by objective third parties, and very likely skewed towards the positive.

At Dr. Sclafani's latest symposium, Dr. Ponec presented some outcome data that was derived from patient surveys. At first glance the data seemed very impressive, but during the question-and-answer period I asked him how many patients hadn't responded to his surveys. It turned out that at the six-month mark, a full 40% of his treated patients failed to respond to his outcome inquiries (not sure if this was conducted via phone, mail, or Internet). It's reasonable to assume that a significant segment of the 40% that didn't respond had less than stellar outcomes to report, thus rendering his entire presentation of outcomes quite suspect. I was actually surprised he would even offer such evidence, it seemed a little disingenuous to me.

I'm not saying that patients are actively inflating their stories, or are engaged in some kind of misinformation campaign. As Curious noted, there have probably been over 15,000 procedures done, yet we only have a relative handful of outcome reports. This lack of clinical follow-up is egregious, as we would have a much clearer picture of where CCSVI actually stands if some kind of formal tracking had been at least attempted…
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Postby MSBOB » Sat Aug 06, 2011 10:16 pm

Yep marcstck, I totally agree. I even think that it is not such a good idea for all the wasted ready volunteers who got the procedure to have not included themselves in a formal clinical study. The doctors who were doing the work should have wondered and asked if it would be part of a clinical study with solid protocols which could be replicated. They instead are expirementing with no regard of decent data collection. From what I can find, most of the work so far cannot be combined because of lack of documentation of protocols used. Regardless of validity of ccsvi, the effort by the doctors so far has lacked scientific rigor. It is a shame and a waste of case study subjects.
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Postby MrSuccess » Sat Aug 06, 2011 10:21 pm

Marc - someone such as yourself ..... is very much " out there " . I mean .... you have your own ongoing blog .... where you share your life story with the Internet .

So.

It might strike you as unusal that others wish to remain silent on their health care story. And want no part of any " reporting ".

It is pure speculation on the actual outcomes . Silence .... does not equal failure .

If and when I win the lottery ..... I'm not telling anyone ....especially Mrs.Success :wink:

Sure . I want to know everything also. Who doesn't ?

Agreed. Trials are a MUST. Even trials have dropout rates.

Here is want I want : A gathering of information of pwMS that have had the CCSVI procedure ..... but ........ have NEVER used DMD's ... at any time. Before ...... during ....... and after.

Show me those numbers ......

I do hope the NMSS funds this type of CCSVI study . :idea:

It might settle a lot of arguments.


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Postby 1eye » Sat Aug 06, 2011 10:24 pm

marcstck wrote:...people who perceive themselves as "winners" are much more likely to go public...

...we would have a much clearer picture of where CCSVI actually stands if some kind of formal tracking had been at least attempted…


"You may already be a wiener'' -National Lampoon
"Leave my self-image out of this!" -me

My CCSVI doc is running a study and collecting data outside the study. Probably more unpublished data out there than you can shake a catheter at...
"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 MSBOB » Sat Aug 06, 2011 10:31 pm

A doctor collecting data outside the study is not really contributing anything to the formal case studies. It's like he/she is doing it to help people, but not to help the greater good of science. That seems egotistical.
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Postby Cece » Sat Aug 06, 2011 10:39 pm

Marc wrote:It turned out that at the six-month mark, a full 40% of his treated patients failed to respond to his outcome inquiries (not sure if this was conducted via phone, mail, or Internet).

What is standard for this sort of follow-up, I wonder? This says that 60% replied which seems to me like it might be an above average response rate. I don't think we can toss his data aside based on an assumption of why a person might not follow up. The most likely reason not to follow up is because life is busy.

Glad you found the thread, Marc. My guess is that what's posted publicly might skew positive but we have no numbers on it. RCTs will help. I also think restenosis is common, I had my partial restenosis, so anyone who thinks CCSVI did not work may or may not have open veins.
1eye wrote:Probably more unpublished data out there than you can shake a catheter at...

Shake a catheter at! :D
Very clever.
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Postby MSBOB » Sat Aug 06, 2011 11:15 pm

There are a lot of well funded and documented studies happening right now. I think more and more will be revealed as these studied get completed. I have been following fairly close. I don't trust patient testamonies too much because the bias involved and the difficulty measuring the results and the nature of relapses. I don't think the response rates to the mentioned study make much difference to the outcome of the larger questions to be answered. I think it is a study to draw funds for future research. In that case, 40% no response isn't bad. It isn't good either. People are just busy. Maybe there is bias there, but it matters little.

I do want to know if the biochemical markers changed at all, or if MRIs show stability or improvement, or if WBCs stop infiltrating the cns or producing cytokines that are linked to relapses. I haven't seen anything about it? I am not denying it might be out there. I just wonder if any one has that data? Twin studies and ccsvi would be valuable, too. There is a long way to go still.
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Postby se1956 » Sun Aug 07, 2011 11:47 pm

...been over 15,000 procedures done, yet we only have a relative handful of outcome reports...


To date 845 treatments are included here:

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

There seems to be a positive tendency.

R.
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Postby Thekla » Mon Aug 08, 2011 12:27 am

Some of the lack of response might be due to less than stellar website/questionaire design. I personally have never found the ccsvi-tracking.com site very intuitive or helpful. Some of the other questionaires I seen were simply unwieldy and disorganized. Some were simply too limited...only about fatigue.

While I'm not an IT expert, my husband is and I've been doing web-based research for years. If a web site is too poorly designed and unfriendly to use, I usually don't bother. There are enough alternatives out there. I just spent time on a german IT security tradeshow site that required 15 minutes of searching through buttons and links to find out the date of the damn thing. I'm sure the organizers thought they knew how to put together a website being IT guys too. Too often the designers are too close and familiar to see how an outsider experiences their site. This could be part of the problem.

Another reason for poor response rates could be the slow gradual improvements that some of us experience. Maybe we are waiting to figure out what has improved?
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Postby se1956 » Mon Aug 08, 2011 4:10 am

With
1283 Participants and 845 Treatments
included, the site has a quite good acceptance.

But there is another problem:

If one divides the patients after treatment in the following classes

1 improvement of symptoms -> treatment was a success
2 MS stopped -> treatment was a success
3 Progression slowed down -> treatment was a success
4 Progression unchanged -> treatment was not a success (useless)
5 Worsening of symptoms - > treatment was not a success (dangerous?)

Patients from group 2,3 and 4 would be more or less disappointed and might give poor response.
Nevertheless it is possible that the major part of those had a successful treatment with limited results.
So analysing the statistics is quite difficult. Therefore trials should be done very carefully.

R.
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Postby MSBOB » Mon Aug 08, 2011 10:08 am

se1956, I agree with the opinion given earlier that if people went out of their way to receive the treatment or paid out of pocket, the groups 1 through 4 would most likely report positively to justify their purchase and beliefs. It is a self-affirming bias. That is why anecdotal evidence is so hard to weed through. Everyone can share experiences, but people should be aware of how grey anecdotal evidence really is before getting hopes up.

Even EDS scores can be subjective for RRMS, or least time dependent as people relapse or remit.

A lot of this becomes a matter of patients' rights. I am a firm supporter of rights. I am also a firm supporter of scientific evidence. I do think it is dangerous to flood an issue with positive testamonies backed by very little hard evidence.

Obviously, I am not saying anyone's experience is real or not.
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