This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.prnewswire.com/news-releases ... 21444.html


The patients get a catheter venogram done, where someone who is not an expert at CCSVI threads a catheter through the patient's veins and heart to reach the jugulars, and if the IR finds any CCSVI stenoses, he will not treat them.

Exactly what is in this for the patient?? Yes, contributing to research is good, but any information gained for the patient on a personal level (such as the identification of stenoses in the jugulars or azygous) could've been gained noninvasively, with the catheter venogram done only as part of the procedure itself, in which a balloon is indeed inflated and the stenoses go away and, with any luck, one's health improves.

So close and yet so far, for the patients participating in this study....

I sometimes think these studies are designed in Hell.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

These studies frustrate the hell out of me. The studies themselves are fine, it is the groups that control the funding and decide on the direction of research that drives me crazy.

Dr. Zamboni found the improving the drainage from the brain in people who had MS resulted in many of them having significant improvements to their symptoms. He hypothesizes that pwMS have insufficient drainage and that this may even be a cause of MS.

Now there are two ways to research this. First is to spend millions of dollars and years of valuable time to study if his theories are true. The other approach is to see if improving drainage really does help and if so, why.

These seven studies are wasting millions of the dollars that we have worked hard to raise. None of these studies are looking to see if angioplasty helps pwMS and if so, why. Questions on how to best image the problem or if the problem is seen in children are important questions, but why are they looking at those issues if they haven't even accepted that angioplasty helps. Why is it important to know if ultrasound, MRI or venograms are best if the people in control of our treatments don't yet accept that treating CCSVI is beneficial. Years from now we will know the best way to diagnose a problem that may not need to treated.

I can't but think that the people in charge of the money are simply stalling for as many years as possible in order to maintain the status quo.

Bruce

Bruce...I agree with much of what you say. These studies do seem to be "network time killers" (credit to Letterman) The only one that is illuminating anything is the study by medical student Claudis Diaconu at Case Western...he studied the doppler protocol of Zamboni and initiated the autopsy studies as a student project.

I wrote up a note about his proposal and how it was combined with the Cleveland Clinic study here:


Diaconu received $500,000--

https://www.facebook.com/note.php?note_ ... 5965972211

What interests me in this project is that it was initiated by a medical student, who studied Zamboni's protocol, found CCSVI in living pwMS and then found intraluminal defects in autopsied veins from pwMS. Dr. Fox is "sheparding" this research....but it makes me wonder if this student found something unexpected. It will be interesting to see how the Cleveland Clinic frames his work at the end of the 2 year period.
we're still in a holding pattern,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer, I totally agree on the value of the study at Case Western. It was inaccurate for me to state that these studies are "wasting" millions of dollars. That's my frustration talking.

I believe that all these studies are important and will contribute to the body of knowledge that we so desperately need. I just get frustrated by the decisions to fund so many studies that are examining Dr. Zamboni's various theories while seeming to ignore funding studies that look at the "effectiveness" of his proposed treatment.

The sooner the treatment is accepted as beneficial, the sooner there will be funded research into why it works and how to make it better. Those are the questions that will help my wife and the all other people suffering with MS. And for those who don't believe in the treatment, the sooner it is proven ineffective, the sooner we can redirect funding elsewhere.

Bruce

Bruce--the only way to get over the placebo label of symptom reduction in venoplasty for CCSVI is to show
1. venous malformations -in vivo and in autopsied veins
2. repair of malformations feasible by venoplasty
3.improvement of blood flow or perfusion after venoplasty
4. reduction of MS symptoms, halting of MS progression

Treatment studies without this understanding will be haunted by placebo effect inference. It's not about "believing in a treatment." It's about understanding the nature of MS. If intraluminal malformations are part of the destruction of the brain and spine, as intraluminal malformations destroy the liver in Budd Chiari disease, we need to know this. I've already seen the ceasing of progression and reversal of gray matter atrophy in my husband, but will venoplasty help all pwMS? A subgroup? Until we understand what Dr. Zamboni found, neurologists will continue to claim any improvements are placebo, and not based in science.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I could see trials if people had not gotten treated already. Unfortunately by the time these trials get finished about 40 to 50000 maybe more will be treated world wide. Two thirds will have one or more of their symptoms abated and half of those significantly. This is one of those instances where treatment will be way ahead of the completed trials and protocols will have changed significantly thereby causing the trials to lag treatment results. Yes their maybe a need for trials but what are they going to say to the estimated possible 30,000 patients that will have had the CCSVI treatment and had at least one symptom removed and the possible 15,000 who significantly reduced their disability - its a placebo effect? or the treatment is not safe? I think the money would have been better spent following up patients for two years with a thorough periodic medical exams so results can be tracked, collated and documented.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience