Note we may have some server downtime today and this weekend as we perform some upgrades. Please save a copy of any posts you make during this time in case we have any server trouble. Thank you!

MS expert questions CCSVI...

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

Postby ozarkcanoer » Sun Nov 29, 2009 4:06 pm

Good question, BBE. I like to think about evolution and geological time. Many people don't believe in either of these models of the world because they can't imagine millions and billions of years. I only know my own case. I was diagnosed in 2008 with 40 small lesions !!!! I am now 63 (now the cat is out of the bag !!!). Now how could I go for so many years with so many lesions and not know I have MS ??? So... why would venous malformations take so many years to show up as MS symptoms ?? Nobody knows when their first lesion formed, nobody. So we may have had the beginnings a long time ago, we just didn't know it.
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby Lyon » Sun Nov 29, 2009 4:45 pm

.
Last edited by Lyon on Thu Nov 24, 2011 10:35 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby ozarkcanoer » Sun Nov 29, 2009 5:06 pm

From Lyon,

First, it remains to be scientifically proven that eliminating stenosis provides ANY KIND of relief or benefit.

From ozark,

Here I will have to disagree with Lyon. "relief or benefit" is a subjective thing for many of us with MS. There is no equation for quality of life (Qol). No one can measure fatigue or pain completely objectively. I have terrible fatigue, I cannot sleep and I have all kinds of head/neck pain. I don't think any kind of pain scale can measure this. I look pretty good. No one knows how I feel. NO ONE. I don't know how anyone else feels either. My brother-in-law died of brain cancer, 9 months from diagnosis until death last spring. I don't know how he felt having brain cancer. But at least with brain cancer the doctors were very kind and empathetic. With MS people are told to smile and take the CRABS and go about their lives.

I liked it when Dr Zamboni said in the documentary that when the team was performing The Liberation Procedure on one of the patients he/she said, "I feel better !!! I am no longer numb !!!". That must be a great thing to hear if you are a doctor.
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby TFau » Sun Nov 29, 2009 5:28 pm

Lyon said:

First, it remains to be scientifically proven that eliminating stenosis provides ANY KIND of relief or benefit.

I find this statement to be untrue. Dr. Zamboni had a hypothesis that eliminating stenosis would provide a benefit. He proved that it did with his small study with RRMS patients, where he found a reduction in relapses.

This is considered to be weak proof because of the size of the study, variability of the disease course, and the subjectivity of QoL questionnaires, that is why many people are skeptical and everyone wants the evidence scrutinized and validated. But I would say it was proven.

The standards held by health regulatory agencies are not the only standards of proof. These agencies face high liability if something goes wrong. Even so, they require shockingly little efficacy to be shown in order to approve a drug.

He did not prove that the stenoses cause MS and he didn't claim that.

I always assumed that the stent/angioplasty procedure provided an immediate benefit because of the improved blood flow and/or the relief of not having the BBB so blatantly breeched. It sounds like there is a theory going around that the iron oxide deposits will be washed away and that will cause the release. But isn't the theory that the iron oxide contributed free radicals which could damage the myelin along with other intruders through the breeched BBB?

Sorry for the long post.
Theresa
User avatar
TFau
Family Elder
 
Posts: 222
Joined: Tue Nov 24, 2009 4:00 pm

Postby Lyon » Sun Nov 29, 2009 7:13 pm

.
Last edited by Lyon on Thu Nov 24, 2011 10:34 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Billmeik » Sun Nov 29, 2009 8:29 pm

really history will show how lame this guy is. I mean tieing a mouse's veins to see if it gets MS is a lame idea. The mice might get EAE but we
ve had decades of research based on EAE and it is just not MS. Mice don't get MS.
Really if he doesn't have the courage to step outside the funding and paperwork institutions that need MS to stay the way it was, then he is just another coward. No problem. But when he actively goes against truth to preserve his market share, he needs to look in the mirror. Is that guy there a little shameless and evil? Or just a yes-man.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby ikulo » Sun Nov 29, 2009 8:40 pm

TFau wrote:
The standards held by health regulatory agencies are not the only standards of proof. These agencies face high liability if something goes wrong. Even so, they require shockingly little efficacy to be shown in order to approve a drug.

Theresa


You're right, many (though not all) of the critics base their criticism on the fact that there is not enough proof of CCSVI. However, do not dismiss this call for proof as some type of government over-regulation. Indeed, the proof that many of these people want is not proof based on standards put forth by a government agency, but proof based on basic statistical principles. These principles govern the methods by which studies are formed, data is collected, and findings are interpreted. The underlying principle is that there are "statistically significant" results - meaning there is a very low chance they occurred by chance. This is accomplished by adhering to certain guidelines, such as sample size, randomization, probability distributions, etc. These parameters are necessary to ensure an accurate collection and interpretation of the data. Now, Dr. Z has done a fantastic job with his findings and reporting them. But, in the eyes of a statistician - one study does not a cure make.

Once Dr. Z's new study comes out, there will be another arrow in our quiver to silence these critics. As more and more 'proof' comes out, these critics will be silenced by their own game, and it will be more difficult to dispute these findings.
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby cheerleader » Sun Nov 29, 2009 8:43 pm

Billmeik wrote:really history will show how lame this guy is. I mean tieing a mouse's veins to see if it gets MS is a lame idea. The mice might get EAE but we
ve had decades of research based on EAE and it is just not MS. Mice don't get MS.
Really if he doesn't have the courage to step outside the funding and paperwork institutions that need MS to stay the way it was, then he is just another coward. No problem. But when he actively goes against truth to preserve his market share, he needs to look in the mirror. Is that guy there a little shameless and evil? Or just a yes-man.


Actually, not to be contrarian...but there really are researchers pinching little mice necks right now! They think they can give mice CCSVI and MS. Animal models are an important part of disease study. And when Dr. Zamboni's future papers and Jacob's papers and Stanford's papers are finally published (will some on wake me up when they finally appear?} there will be more scientific evidence. Not to endlessly repeat myself (but I will) Dr. Zivadinov told us in Bologna that he thinks there will be thousands of papers on CCSVI published in the next 10 years.

Believe me, I understand the frustration, but the wheels of scientific discovery move slowly and methodically. However, if folks want to know if their veins are occluded and look into repairing them-they have that right. Jeff is glad he did, but until the peer-review paper is published on his case, his reporting is considered subjective.
And stop ticking Bob off...he's going red letter on us (and I thought that was just for Jesus' words!) :wink:
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5017
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Lyon » Sun Nov 29, 2009 8:49 pm

.
Last edited by Lyon on Thu Nov 24, 2011 10:34 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby ikulo » Sun Nov 29, 2009 10:00 pm

Lyon -

you're right about my usage of "us" and "them." Admittedly, those were used for lack of better terms.

And I think it's fair to label those who desire more proof as "critics." I used that term to mean those who express judgment about an idea. However, a disagreeable opinion about an idea can be based on many different grounds. In this case, many of the critics that offer their judgments do so because they perceive there to be a lack of "statistical proof," the proof I discussed earlier. With a few exceptions (the potato-chip-rat guy who criticized CCSVI on his blog being one of them), many are just looking for more studies based on sound statistical methods -- after all, medical researchers are just statisticians with a white lab coat. In fact, they even print textbooks about it! See: http://www.amazon.com/Statistics-Medici ... 0120887703
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby chrishasms » Sun Nov 29, 2009 10:20 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 1:28 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby TFau » Mon Nov 30, 2009 7:21 am

Well, perhaps I shouldn't have used the word "proof", but rather evidence (weak) of. If you look at the very narrow statement of what was lacking proof made by Lyon though, and you consider that the 12 people in active relapse recovered at least as well as if they had steroids, I would say they received a benefit. Dr. Zaboni's hypothesis was that these people would be helped by immediate intervention and they were helped. Since there was not a control group and there was a small number of people, much reliance is being placed on the subjective interpretation of the recovery I realize. I made an assumption that the medical professionals and the patients knew what their normal reaction to steroids would be and compared it to their reaction to the liberation treatment.

I understand the relevance of statistics. I've been writing patents for years (before that in a white coat for many years). The standards of proof for utility are much lower in a patent - Dr. Zamboni's results would have withstood any attack by an infringer - my approach to convincing evidence is now skewed! Not that I'm suggesting he patent his work, mind you.

After seeing the efficacy of the MS drugs statistically proven, as well as epilepsy drugs (my son has a seizure disorder) only to have them not work for many people (anecdotal), I now give a greater consideration to subjective reports than I did before. I also get defensive when people (no one on this board) assume that absence of proof is proof of absence, as some critics have done.

Anyway, I've enjoyed this discussion. Re the mouse studies, when I first heard about Freedman asking Dr. Zamboni about mouse studies, I had the mental image of vascular surgeons practicing vascular surgery on mice in medical school and had a little chuckle.

Chris, good luck with your appointment!

Theresa
User avatar
TFau
Family Elder
 
Posts: 222
Joined: Tue Nov 24, 2009 4:00 pm

Postby Billmeik » Mon Nov 30, 2009 8:19 am

I slept on it and decided that there HAD to be a study where they pinch little veins in mice. Or one had to be started NOW.

Glad to hear it. So you sound like a knowledgeable chap, how 'anatomically infeasable' is the profusion of do-oxygenated blood when it returns to the brain? I've had smart people suggest to me that blood coming into a brain from a vein just isn't conected in the way arterial blood is...
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Billmeik » Mon Nov 30, 2009 8:25 am

oops O misread, you're not a chap at all.

you are the person who wrote the sticky thread I printed out for my doctor.
d'oh.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Billmeik » Mon Nov 30, 2009 8:49 am

ok the other question: how much of this mechanism is thought to be the iron buildups, and how much is the de-oxygenated reflux?

I'm getting the pics this week and may get cut at stanford after that...but for some reason I'm still skeptical like anything.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service