Although not in a published study, Zamboni has recently been quoted as saying that the new testing study has done over 500 blinded tests, with 90% of pwMS having detectable CCSVI as compared to 2% of the general population. All very interesting, but completely irrelevant to treatment.

An even simpler and cheaper study than Colby's, which would advance the debate, would be to get 100 consents from Canadians who have gone abroad for treatment, compare their current EDSS scores from a post surgery neurology exam against the EDSS scores pre-surgery. Get the neurologists already paid to do the work to provide the 2 numbers to the spreadsheet – add and divide by 100. On average, pwMS get worse over time, i.e. EDSS goes up, if the average over 100 people is that people get better, then some clinical benefit of the TREATMENT is established; justifying further trials on the TREATMENT. Unlike Colby's study, my study involves no unnecessary medical treatment, merely consents to the use of existing anonymous medial information – 2 EDSS scores.

I am pro-CCSVI, but I think it is disingenous to say that only anti- CCSVI people call this a cure.

Occam's Razor. CCSVI is characterized as being a generally congenital disorder, similar problems occur in veins around the body. The redundant venous system is stressed in people with MS and fails over time. Instead of varicose veins and skin ulcers, when the cerobrospinal system has a venous insufficiency problem which is permitted to become chronic, MS is one of the possible results. I might be wrong, and my opinion is irrelevant.

The Canadian study proposed by the premiers may also be irrelevant (except that some of the people in the study get to be treated), as there are studies on the treatment underway in a number of places and the preliminary results presented at the CCSVI Symposium at SUNY in July are very promising – overwhelmingly so.

Fingers crossed not only for people who have or might get MS, but also as a possible research path for similar diseases, like TM.

There is a discrimination lawsuit in the works to help bring the liberation treatment to all Canadians.

Please visit: http://www.angioplastyforall.com/

Join us.

I understand your righteous uber-skepticism towards the Zamboni theory, however it might be worth considering recent history. The last time Canada rejected the practical application of a Zamboni idea nearly led to an international embarrassment for our country. We were shown to short-sighted, unprepared and cheap. We are indeed fortunate that in the end, Zamboni was gracious enough to overlook our poor behaviour and helped to save the day with his innovation.
http://ca.sports.yahoo.com/olympics/vancouver/spe…

Sir, one internet for you.

I so hate it when I agree with you.

You bastard.

It's true that the treatment need not have a comprehensible pretext or theoretical grounding to be potentially useful. But a) at the very least we need to know if there's any point to all this expensive imaging–we could dispense with it if there's ultimately no verifiable difference between MS and non-MS subjects, which is the finding in two follow-up studies that landed about a femtosecond after my original post; and b) "liberation therapy" doesn't need to be anyone's conscious "scam" at all in order to be useless or harmful.

Admittedly I am only following this second-hand (through your posts and other stuff that pops up to the CBC-ish level.)

Still I find it surprising that some arms-length assessment of the treated patients has not surfaced. I am making two assumptions 1) that most or at least many of the MS patients going overseas for treatment would tell their doctors and 2) that there are standardized tests for assessing the stage and severity of symptoms of MS.

It strikes me that while a doctor's impression of a patient before & after may not be a proper double blind study, it still would either add confidence or doubt as to the efficacy of the procedure.

So the suggestion is that Zamboni or another scientist prove his theory by replicating his data? Setting aside the notion of it being done as a televised stunt, his data has been replicated by Dr. Haacke of Buffalo University. While the degree of association is not yet determined precisely, Zamboni with his ultrasound methods and Haacke with his MRIs both found statistically significant degrees of stenosis in the jugular veins of MS patients several times greater than that found in control patients. So the replication that is called for in this article has been done. Not in a huckster on tv way but in a controlled scientific fashion. The next step is to perfect the technique (which is not so simple), determine 'best practices' or how and when and with what type of catheter balloons at what type of diameters using what type of imaging, and put it to the test in randomized controlled treatment trials. Some such trials are already being planned. If CCSVI is real, it will prove out. As of now more research is needed and I hope everyone involved will treat each other with respect.

Sure. But a lot of people in your position have higher expectations than that, and don't like to hear the placebo effect discussed at all or don't think it is real.

Placebo is real, no doubt. And those that just measure improvement saying 'my feet feel warm', i am suspicious of. However when a person goes from a wheelchair to a walker, trust me, that's not placebo…

One of the two European studies used a Valsalva maneuver (hold your breath, turn your head and "push"…it helps expand the jugular vein as it closes off the escape routes) which is the opposite of how Dr. Zamboni tested for CCSVI (he specified that ccsvi can be imaged when it is not under Valsalva conditions).

It's like someone saying, "Hey, I found treasure on Nonvalsalva Island!" and another researcher sails to Valsalva Island, does not find treasure, and declares the first guy wrong. Sailing to Valsalva Island will do nothing to determine if there is treasure or not on Nonvalsalva Island. (No insult to intelligence intended with this analogy.) :)

Between the two studies in question there were 77 MS patients and 41 controls.

You know, in the end, every person decides for themselves. Blocked stenosed veins are no good on anyone. if I did not have MS, i could get venous angioplasty in Canada…and I guess thats what is so frustrating. I did not come to my decision lightly, I am not a risk taker by nature…but this just feels right in my gut…ya know? Not desperate, no high expectations, i don't expect to walk again….just maybe stop the progression….so we'll agree to disagree.

http://www.facebook.com/note.php?note_id=14990784…

read this

Exactly. it's not JUST placebo.

What it is is placebo, plus relapsing-remitting or secondary progressive MS.

Because you know, as well as I, that the classifications of MS are fluid, and mostly guesswork.

Thank you Arne for posting MS Beal's reply. She is correct.
The German paper used a different protocol to test than zamboni did.
The diverted from Zamboni in 3 critical ways, upper jugular, vs lower, parallel probe position rather than transverse and use of valsalva maneuver vs, no valsalva, as Zamboni directs. Apples and oranges.

Is there some meaning perhaps in the breakneck speed with which these papers were rushed to press? (6 weeks later with no peer comment period) The editor in chief of the journal best mispronounced where their papers were published has been quoted widely (WSJ,NYT, LA Times) attempting to discredit CCSVI. Rebuttles have been written and submitted to him, let's see if he's man enough to publish those. He shut down the venous theory in the 1980's, before Zamboni proved Franz Schelling correct. He won't stop it this time. Neither will you, Colby. The truth is winning. the delays just add to the suffering, whose side are you on?

Yes, that is definitely a reasonable, not-at-all-hysterical way to put the question. Rest assured, you don't sound anything like a fanatic drunk on indignation, conspiracy theories, and bogus certainty.

THANK YOU CAROL. ALL my CCSVI symptoms are due to blood circulation. ALL of them. That is what so-called MS is. POOR BLOOD FLOW AND CIRCULATION. NO brainer. Nay sayers too bad you are not lucky enough to be in our shoes for a week. I have been living this for a longer period of time and why am I so angry all the time now? BECAUSE as Carol said this was knowledge presented in the 80s and the nay sayers did not want to or were too lazy (nah not it) to even discuss the find. They knew about this even years before but thanks to no INTERNET we would not find this out. I could have been relieved of this most frustrating and at times unbearable condition and I would not be ranting right now. NO THANKS TO ALL THE NAY SAYERS WHO HAVE NO CLUE UNLESS YOU LIVE THIS.

IRs performing this procedure are reporting that they are finding 50-100% blockages in jugular and azygous veins. This can be a result of backwards valves, aplasia, basically all the things that can go wrong with veins in the lower half of the body (chronic venous insufficiency, budd chiari disease) that have never been looked for in the chest and neck veins. As a result of the blockage in the jugular veins, the blood pools and refluxes; the reflux is the blood going up toward the brain instead of down away from it and can be seen on the transcranial doppler. The procedure itself is minimally invasive although not without risk. Any doctor must decide with his patient if the known risk outweighs the known benefits of a procedure. In the case of CCSVI, the U.S. doctors who are treating it have decided with their patient that it is to their benefit to have unblocked and unrefluxing blood flow of the deoxygenated blood away from the brain.

Which IRs? Where have they published? Evidence for "backwards valves"? Aplasia? Congenital malformations generally do NOT appear in isolation from one another, and there is absolutely no evidence of anything congenital about CCSVI. Budd-Chiari syndrome arises from the thrombotic occlusion of hepatic veins. Not even Zamboni is suggesting that venous thrombosis is related to this.

The consensus document from the international union of phlebology that I posted about also mentions Budd Chiari as a vascular malformation of the hepatic veins. You can get the same budd chiari result from thrombosis as you mentioned or as a vascular malformation; it is the latter of the two that I was referring to.

Carotid endarterecetomy: is that what was shown a decade or so ago to ever-so-marginally improve survival, but only if you ignored the ones who never escaped hospital alive following the procedure? If so, has its scorecard improved since then?

well everyybody can always learn more-no doubt-but I have 5 degrees, i didn't just fall off the turnip truck-and by god, if its placebo that gets me out of a w/chair, and allows me to become less of a future drain on society (let alone my own finances), allows me to teach again…i repeat, i'll take it. I don't expect that, but I'll take it.

ps I actually do know quite a bit about placebo effect

The benefit comes mainly for patients who have experienced a non-disabliing stroke or TIA which can be attributed to a vessel at least 70% stenosed. In such cases, the benefits more than outweigh the risks, but the benefits exist only for certain subgroups in the asymptomatic patient population – I don't have the exact numbers on me, unfortunately. It's notable to mention that this is an open procedure done with continuous EEG monitoring.