This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Sat Apr 24, 2010 4:06 pm**

Opera wrote:Hi All,

At the last count the death toll from Tysabri was 49 I think. It is pity the Neuro's are silent about that when talking of the dangers of CCSVI procedure.

As of April 6, 46 cases of PML had been diagnosed in patients taking the drug, with 11 deaths.

http://www.reuters.com/article/idUSN141 ... arketsNews

Posted: **Sat Apr 24, 2010 4:13 pm**

Posted: **Sat Apr 24, 2010 4:17 pm**

Very well said Rosegirl, and yes what we experience will not be included.
That is unfortuneate but it is difficult to include when there is such opposition to CCSVI.
I am talking in the UK where the government out right rejected our petition of over 10,000 people. The reason given was that the MS Society after consulting with their head Neuro recommended not to do this.

So without trials being done, how can they gather the information needed to assess the pros and cons.

Also please note that the Neuro that was consulted is also a partner in one of the biggest drug company Biotec... so is this a bias decision, you decide for yourself.

We were more than willing to have someone come and follow this treatment for my wife, i spent countless hours trying to contact media, politicians etc.... but to no avail, they just don't want to know, in the UK anyways, I can't talk for other countries.

Posted: **Sat Apr 24, 2010 4:26 pm**

livabird wrote:We were more than willing to have someone come and follow this treatment for my wife, i spent countless hours trying to contact media, politicians etc.... but to no avail, they just don't want to know, in the UK anyways, I can't talk for other countries.

Dr. Simka's work is included in international symposia, the latest I believe was in Hamilton, Ontario, Canada.

You mentioned that your wife presented something Dr. Simka had not seen before (100 percent blockage of one major vein when in a seated position, if I recall correctly). So pictures of your livabird will probably be featured in future symposia. So your wife's treatment will likely be included in the data presented in the future by the physician who has probably performed the most CCSVI tests/treatments to date.

I downloaded Dr. Simka's Hamilton presentation in pdf file format from a link here and can get it for you if you have not seen it.

Posted: **Sat Apr 24, 2010 5:49 pm**

Rosegirl wrote: The second thing that concerns the pro-CCSVI doctors is that anyone who gets liberated outside of an MS study won't get their data included in the studies that will help all the others who await treatment.
Rosegirl

Do you seriously think there would be a shortage of participants in ANY CCSVI study? EVERY planned study is OVERFLOWING with willing participants. This is a red-herring.

Posted: **Sat Apr 24, 2010 5:57 pm**

FlashHack,

You are right about the clinical trials. I was told that a group of professors at my local medical school were applying for NMSS money for a clinical study of CCSVI. But when I said I was interested I was told that the neurologist involved has 2000+ patients that would have first chance at the trial. So I am out of luck. Since I won't be counted anyway shouldn't I have a choice to get the testing and procedure if necessary ? BTW, I was told that I am too old for any of the drug trials 2 years ago when I was diagnosed. What ever happened to personal choice ?

ozarkcanoer

Posted: **Sun Apr 25, 2010 4:57 am**

Flashhack, Of course there are plenty of people who will be in any CCSVI studies. But anyone treated now outside a study is data that is available now but lost! The faster the data is available, the better for everyone.

Maybe the way around this is to have studies of CCSVI done from a vascular perspective so we don't have to dink around with the MS Societies? Perhaps these studies could be funded from another source?

Posted: **Sun Apr 25, 2010 6:17 am**

Here's what I don't understand. In order to do a true, blinded study -- if I hear the phrase "placebo effect" from a doc one more time I will scream -- then they would have to do sham surgeries or I suppose you could say "pretend" to do balloon angioplasty on half the patients. Personally I wouldn't want to take part in anything like that. I'm not saying I've heard of this being done anywhere but it's an interesting point... and I'd sure as heck want to make 100% sure I'm getting the balloon.

I guess my results wouldn't be part of any study, then, and maybe that's selfish but I am sliding downhill fast. Let them study me but I want the real treatment and I want it now before it's too late.

Pam

Posted: **Sun Apr 25, 2010 6:51 am**

I was correcting the inaccurate information posted by the original poster, who stated that they there wasn't "a single case where anyone had an adverse reaction from the Liberation Angioplasty," and there wasn't "a single case where anyone got worse."

but you did so by supplying irrelevant info about stents and neurological reactions. I mean half of zamboni's original group had restenosis, so they all had neurological problems.

The only one I'll give you is the valve that got damaged. Otherwise you sound lame and hysterical like a neuro.

Posted: **Sun Apr 25, 2010 1:14 pm**

JoyIsMyStrength wrote:Here's what I don't understand. In order to do a true, blinded study -- if I hear the phrase "placebo effect" from a doc one more time I will scream -- then they would have to do sham surgeries or I suppose you could say "pretend" to do balloon angioplasty on half the patients. Personally I wouldn't want to take part in anything like that. I'm not saying I've heard of this being done anywhere but it's an interesting point... and I'd sure as heck want to make 100% sure I'm getting the balloon.

You should check out the description of a study Zamboni, et al. are currently publishing. He described it during the NMSS web forum. Here is an excerpt from page 7 on the NMSS web site.

We also designed a pilot study together with the Buffalo group that is called endovascular treatment multiple sclerosis study. We divided our patient population in two groups. The first group underwent immediate treatment is immediate endovascular treatment group and the second group, delayed endovascular treatment group, was operated on 6 months later. So, for 6 months, you take the opportunity to measure clinical and MRI outcome with very rigorous protocol, and this is under the way of publication. We know just vascular outcome. Treatment also in this group with endovascular angioplasty was safe and well tolerated. Rate of restenosis was decreased with respect to the first study, 0 percent in the azygous, 29 percent in the internal jugular vein, and the vascular treatment MS study evaluated its clinical outcome measure, MRI conventional and non-conventional measure, including longitudinal data on iron deposition. Complete statistical analysis is under the way by an independent statistician and we plan to present this at the next ECTRIMS meeting.

Posted: **Mon Apr 26, 2010 8:44 am**

Thanks so much, Flash, very interesting if a bit hard to understand (lost in translation?). I think they're saying they have two groups, studying one group for 6 months with procedure, another without, but both groups eventually get the procedure... it's just a delay for one group. If so that sounds much more humane to me.

Posted: **Mon Apr 26, 2010 8:47 am**

Exactly. The other encouraging item was that the incidence of re-stenosis was only 29% in this study vs. 50% in Zamboni's original. Perhaps they are getting better at doing the ballooning. Very encouraging.

Posted: **Mon Apr 26, 2010 11:09 am**

This Sham surgery annoys me so much too! Did they do sham surgeries for people with broken legs? Lets just pretend to mend one person's leg and leave the other to see what happens. A blocked vein is as relevant as a broken leg in my opinion. So why should someone be made to live with something broken whether it is causing a problem or not.
Its a simple procedure that should be done if requested by the patient and there is significance evidence of stenosis/reflux.

Posted: **Mon Apr 26, 2010 11:41 am**

Even if I don't know the odds of CCSIV, i know the odds of my own disease, I live it every day.

My money, my health, my gamble! MY right!

This Is MS Multiple Sclerosis Knowledge & Support Community

The Great CCSVI Scandal of 2010

Re: CCSVI and Tysabri

Re: CCSVI procedures

testing for CCSVI

Studies are coming

Precisley