Ranker(Reply 34) -

I read about it 4-5 years ago. But at the time it was used to explain "typical MS lesion locations" being around the corpus colleusum....now it is being interpreted as the cause of MS. So all that testing was done on MS patients & observations were made, its just the interpretation of what was observed has changed....much like troubleshooting-repairing your car. The correct repair needed to fix a problem in a car is not identified correctly and multiple repairs that don't fix it are done first.

I will be interested in reading the results of the trials with this new interpretation for the observation.

reply #35

I would totally agree, Lynn. What people go in looking for so often slants what they see, what they hope will be the outcome so often helps it be, and I am not usre exactly, at this point, what the medical profession would really like to see for MS patients. Maybe this will give us a clue. And I also will be interested to see if the Europeans and the FDA/medicals again are in sharp contrast.

""I urge all MS patients to get tested for narrowing, twisting or outright blockage of the veins (this is an easy procedure). Beware of the reticence of the MS Societies of Canada and the U.S.. They are notoriously pro drug companies and will discourage patients from getting tested for blockage or pursuing this treatment.""


Which is one reason why I will never donate any time OR money to the MS society. I wont do any of their walks and I am sure not volunteering for them. I may help out with some of the other MS groups though.


I have a massive tumor in my thyroid which could be interfering with my veins. I need to get this checked out.

Sentient (Reply #37)

This article describes that people continued to take MS meds after the procedures...so the pharmaceutical companies should not be adversarial about it.
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Also, all of Zamboni's patients remained on standard drug therapies, which aim to prevent a relapse, which might suggest the vein angioplasties act in concert with the drugs.

http://www.timescolonist.com/health/Victoria+multiple+sclerosis+patient+wary+Liberation+Procedure/2333344/story.html

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And I just found the original open label study that was done, it was small, that's why we need to wait for more study results on it. The link to the article, I found on ThisIsMS. I just started reading the first trial. It was open label,only 65 patients and only followed for 18 months.. I'm on the first page. So I haven't read much of it.... I have a few lines highlighted....I'm a cautious soul. I like my evidence lined up before I decide. :(
I am S-o-o-o Very anxious for the study results to be released.

-Resenosis rates are elevated in the internal jugular veins but very promising in the azygous veins, suggesting the need to improve endovascular techniques in the former.

-CCSVI endovascular trreatment signiificantly improved clinical outcome measurs, especially in the RR group: the rate of relapse-free patients changed from 27% to 50%(P

Continued from reply #38. It didn't post the rest although I typed it out....
CCSVI endovascular trreatment signiificantly improved clinical outcome measurs, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% *P

Continued from #38-39.
I am having difficulty posting this link to "A prospective open-label study of endovascular treatment of chronic cerebrospinal venus insufficiency"

copyright @ 2009 by the Society for Vascular Surgery doi:10.1016/j:jvs.2009.07.096

***** http://www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf ****

****www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf ***

Reply #38,39,40
I did want to point out that the rate of relapse-free patients having changed from 27% to 50% is not that great of an accomplishment to brag about! We are perhaps getting more excited about this than is merited. Tysabri & most if not all of the new drugs coming out has a greater affect than thre CCSVI procedure..

Perhaps WITH the new meds it is very effective...but we are waiting on those trial results!!

nny11 wrote: I did want to point out that the rate of relapse-free patients having changed from 27% to 50% is not that great of an accomplishment to brag about!

Alright, I'm not THAT stupid, but I'm pretty certain that a "change" from 27% to 50% is VERY significant.

If I understand correctly, you are saying that various drugs have an efficacy rate beyond 50%?

Your caution, and mine, is warranted, but I view the drugs as MORE of a crap-shoot than the "27% to 50%" change.

PLEASE tell me why you believe otherwise?

Tysabri has I believe a 60% relapse free status up from the 30% standard of the older Crab drugs. It was only 65 patients. It was only for 18 months. I read som more pages therse was a table of EDSS scores of the 65 patients,,,,overall it was 4 +/- 2.3 and 1.7 +/= 0.9 for RR patients. My understanding of the EDSS score is 1-2 can be a normal unaffected person. At 4 some one is obviously affected by MS and at 6 some os very severly affected by MS....

So my caution of the CCSVI procedure...not much is known about it. It was a short duration trial, not many people in it. The people who were in it were not much affected so the majority of the improvments were subjective reporting of improvements...how they feel after the procedure.

Really the results of the studies need to be done before any conclusions can be made about it, but the open label trial does not look that promising. I know Ty is up to 60% as are the rest of the new drugs coming out. It may end up being an "adder" to existing treatment not a treatment on its own.

Correction to Reply 43 were I wrote.... EDSS scores of the 65 patients,,,,overall it was ****4 +/- 2.3 and 1.7 +/= 0.9 for RR patients. My understanding of the EDSS score is 1-2 can be a normal unaffected person. ***At 4 some one is obviously affected by MS and at 6 some os very severly affected by MS....

****OVERALL IT WAS 3 +/- 2.3, not 4, as I had mistyped. So everyone in the trial was not very affected by MS.
***At 4 some one is obviously affected and starts needing some mobility assistance, like a cane.

Although if 27-50% is 23%. If 23% was added to a med doing 60%, that would be close to stopping the disease. One of the meds in trials is reporting 80% reduction in relapses...if 23% was added to that, there would no longer be MS.

*******************************************************************************A while ago I posted MS drug development I saved a copy, I will post it again its LONG!!!!
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From 10/23/08...........I wrote...........

My MS Mentor has had diagnosed MS since he was 20 and is now 65, he is a little worse for wear, but does walk short distances with a walker. He is absolutely determined not to be in a w/c.


He told me when I was new to this, that every year around this time - year end, there would be announcements of the drugs that show promise because at year end they needed to report the results for their funding. The first year, geeze I thought a cure was gonna be next year. :(
It wasn't.
I learned to identify a more realistic drug timeline....

NKL Posted the newest one showing promise yesterday, alemtuzumab [campath]. ...
"http://www.usatoday.com/news/health/2008-10-22-multiple-sclerosis_N.htm?csp=34...."

It's pretty hopeful...
Progress but not quite Perfection.
It will be a different MS world we leave when we leave this world..
********************************************************************************
1986 and before - no MS meds. I assume treatment for relapses by steroids & watch the decline.

1986 - 1996 Disease Modifying Meds. 30% effective.
Every day, every other day, weekly self injections. CRAB drugs. Copaxone, Rebif, Avonnex, and Betaseron.

2004 Tysabri. 67% effective. Monthly Infusions.

Phase III Trial Fingolomid. 55% effective. Oral.

2008 Announced in Pipeline Alemtuzumab [Campath]. 74% effective. Yearly infusion.

The first MS Med approved in US for treatment of MS was Betaseron. I ran across this post that someone wrote about the trial testing search for volunteers when it first came out. It was by lottery. Those that won got to treat their MS..
**************************************************************************
"The voulunteer needed.."Eligible patients must be ambulatory, able to inject themselves
intravenously (the method of administration), and have had one to six
documented relapses in the 12 months prior to registration."

"At a cost of $69.69 per vial, BetaSeron isn't exactly cheap. Berlex's
recorded Patient Information Line reveals that patients paying for 10
consecute months will be supplied with two months' worth of BetaSeron
free of charge, for a total of $9,894 per year. Some uninsured patients
will receive the drug without charge, others at discounted prices.
Manufacturing and research-and-development expenses contribute to the cost."

"The distribution process is a bit complicated. "Patients will purchase
Interferon-1-B direct from Berlex through participating pharmacies."
The lab estimates that "limited amounts will begin shipping to
distributors in early October," acknowledging that "Initial supply will
not be sufficient, but Berlex is aggressively expanding our
manufacturing capacity."

"But Berlex Laboratories, holder of the patent on BetaSeron and the
only supplier licensed by the FDA, doesn't have enough to meet the
need. The solution is the "Equal Access Program," more commonly known as the "BetaSeron lottery."

"Berlex employee Joe, not permitted to give his last name "for security reasons," says of BetaSeron "It's a genetically engineered substance, put through a biological fermentation and purification process. That's part of the reason that Berlex was caught short with the supply; it takes a long time to manufacture and the facilities aren't ready. The FDA also approved it much faster than Berlex had anticipated, which caused a shortage, because it was put through the FDA Fast-Track."

"Although the FDA won't release specifics regarding drug approval
processes, a local representative explains "Fast Track would be
Investigational Drug Exemption, where this is the only substance that
shows promise, or Mercy Use, reserved for fatal, incurable diseases"

********************************************************************************

Interesting stuff, huh? It's always Progress not Perfection.!

It's a ALWAYS a matter of Continuous Progress. :) Link to Betaseron Lottery.

..."http://newsgroups.derkeiler.com/Archive/Alt/alt.support.mult-sclerosis/2005-09/msg01619.html"

I'd give both arms and both legs if this works!

And this one...Oral BG-12 in Phase IIb Trials Reduced enhancing lesions by 69%.

I don't think the standard self inject crab drugas are here for much longer "

Posted the on 10/24/08 by me.

I couldn't disagree more. The the patients that have had the liberation treatment have not had any relapses. Only the ones whose veins became blocked again have. I'll take surgery over immune altering drugs any day of the week especially since premilinary findings show great success to date.

We don't need more drugs. We need to pressure the medical community to get moving with their research.

I am with wcoyote here!

Who would want drugs if there is a surgery that could actually fix us??? About 30% of dr Zamboni's patients did relapse, but these were the ones whos veins did not remain unblocked.

I think the number is much lower in the 65 people who got similar surgeries at Stanford, but got treated with stints to keep the veins open.

We need to push to get these trials done, so we can all get tested and treated for CCSVI.