This Is MS Multiple Sclerosis Knowledge & Support Community

Lyon wrote:Additionally it's been brought up that he's getting a cut from the sales of his "recommended" machine despite general acknowledgment that nothing has shown to be as accurate as using the venous catheter.

Big deal! He deserves the reward! More so than any banker deserves his or her bonus or any company boss of a huge corporation his or her massive salary. He discovered an effective treatment for MS!

1eye wrote:and I wish someone would give me a break and cite reference for their numbers. 100 % again. Where exactly?

http://jnnp.bmj.com/content/80/4/392.full
I guess this paper isn't written very well. Maybe it's the translation to English. But, on page 395:

None of the controls, including those who had HAV-C, were positive for more than one of the criteria

It goes on to say:

In none of the HAV-C subjects who underwent venographic investigation with negative ultrasound were there any stenotic patterns

There's your 0% in the controls.

On page 394:

Sixty-five subjects with MS fulfilling the ECD-TCCS screening criteria...underwent selective catheterism

The study consisted of 65 patients with CDMS, so there's your 100%.

1eye wrote:I'll bet you $1M I can detect it better for example than someone who insists on using the Valsalva maneuver. Even Zamboni's publications nixed that one. (So, ok, first you learn to read.) I can do this with most Doppler Ultrasound machines, and the correct probe. But, not being trained, as an MD, or radiologist, my bet would have to be strictly that.

I would take that bet, because it's obvious you don't read very carefully. I assume you're referring to he Doepp, et al study, where this Valsalva nonsense continues to be perpetuated. If you actually read their paper, you will see that they used a Valsalva test, in addition to Zamboni's other 5 tests. They did this because they suspected Zamboni's team may have been detecting reflux caused by valvular incompetence. Besides, this argument that they were unable to detect CCSVI because they used a Valsalva maneuver makes little sense. Using the Valsalva should have resulted in a higher incidence of reflux, not less.

Maybe you should read things a little more carefully (and review basic math) before making such condescending posts.

Edited to correct spelling error.

Lyon wrote:

CureIous wrote:

Lyon wrote:
Sounds like a scam to me.

First, to clear up the quotation problem which makes it look like I used the word "scam" http://www.thisisms.com/ftopicp-132846.html#132846

CureIous wrote:Come come now Lyon, my illustration was to simply point out that training replicates and pays for itself many times over, and in the bigger scheme of things medical, is quite the value. You'd pay more to get entry level training at these schools that advertise on TV than for this, and this will pay out in immediate and long term benefits. Once again, 4k, in a heartbeat.

My gf's brother paid 7k for computer learning center in LA to become an entry level programmer. After spending all that time and money, he soon found out that not only was the field swamped, and many jobs going overseas, but those promised entry level jobs were few and far between.

Comparison? There is none, though I appreciate the AZ oceanfront overreach...

But your point in this is just more of the same....I agree that good education is costly and worthy of the cost. I'm paying for two kids in college at the moment, but even in that light it remains to be proven that what Zamboni has to teach (regarding CCSVI) is worth learning, which takes us back to where we started.

So are you insisting it is of no intrinsic value then? Sounds like cart before horse, let's prove it exists before we look for it, so don't charge to learn how to look for it, because it hasn't been "proven" yet that it even exists.

This sounds eerily similiar to the "we can't fund studies until studies prove that this is worth studying" argument. Zamboni has stated there is a learning curve here, why should all that be on his dime?

I doubt anyone, or any institution would put that kind of cash down on something they even remotely thought was smacking of charlatanism. Since little is hidden on the internet, I have full faith and confidence that if that many people are tossing their 4k into a rabbit hole, it won't be long until we hear about it. Have faith Lyon, Dr. Zamboni is under enough intense scrutiny both there and abroad, I doubt much will slip through the cracks. ITMT, if you send me 4k I'd love to sponsor someone to go over there and get the training. After all, as I posted long ago, even OB/GYN UT training is lax in this country, even after all these years of an incredible knowledge base to build upon, stands to reason that a new application of a not-so-cut-and-dried science is going to have as much if not more of a learning curve, after all, veins aren't babies, well kinda, since no two are alike...

I can not figure out how CCSVI is ever going to proven one way or another. The first problem is the test for CCSVI seems to be subjective which I believe has led to much of the confusion about Zamboni's protocol. It seems there are a handful of researchers/doctors who can easily locate CCSVI in MS patients(such as oneeye claimed to have the ability to do) but the majority of investigators just can not seem to locate these "obvious" blockages or else maybe they or do not believe it causes such major neurological damage. If the liberation procedure is not effective for someone it must be because there is another blockage somewhere. If they feel bad a few months after their surgery it is because they have restenosed in which case they are found, through subjective testing, to have blockages again. How are we ever going to get to the bottom of this???

Zamboni's time and expertise is worth way more than that.

cheerleader wrote:Mamma mia---
it's a college course at the University of Ferrara. (Unife.it is the University's web site. That's where Dr. Zamboni is a professor) They charge a tuition, you get 60 credits and learn how to utilize the doppler technology. Even the Learning Annex charges tuition.....

The Esaote machine has long been the one Dr. Zamboni prefers and has helped redesign (because it's made it ITALY), but there are other intracranial dopplers that work, too. GEs got a spiffy one. The terrific thing about doppler technology is that you don't need contrast dye or radiation. Can't wait til Dr. Dake gets his techs trained. Jeff's spent too many hours in the tube for his blood flow to be scanned.

It was a year ago today I sat at the University of Bologna and heard a pretty impressive panel of doctors speak about the correlation of venous malformations and MS. And I didn't have to pay anything...they picked up the tab. Now, there's a scandal!
cheer

The voice of reason .. hushed in the fray..
Thank you Joan, and congratulations on this journey's milestone

Lyon wrote:Despite all the rationalizing I've heard tonight I've never heard of such a thing and I think most reasonable people would agree that something is rotten in Denmark...er Italy.

It's good to know you speak for most reasonable people.
Oh, and I too am paying for 2 kids in college. So at least we have that in common.

scorpion wrote:I can not figure out how CCSVI is ever going to proven one way or another. The first problem is the test for CCSVI seems to be subjective which I believe has led to much of the confusion about Zamboni's protocol. It seems there are a handful of researchers/doctors who can easily locate CCSVI in MS patients(such as oneeye claimed to have the ability to do) but the majority of investigators just can not seem to locate these "obvious" blockages or else maybe they or do not believe it causes such major neurological damage.

It seems to me the vast majority of investigators are finding the blockages. Especially the ones doing catheter venograms. But anyway, why do you think it can't be proven? The Buffalo study is by all accounts quite rigorous; don't you think it could clear the air considerably?

scorpion wrote:I can not figure out how CCSVI is ever going to proven one way or another.

just wait until your MS gets unbearable and give it a try and get back to us.

Lyon wrote:I'm aware and appreciate that anecdotal evidence is good enough as far as a lot of people here are concerned. I've said many times that wishful thinking and hope are wonderful things.

Anecdotal evidence will have to be good enough for some of us. It's all we're going to get. By the time research is done to prove the association of CCSVI to MS to the satisfaction of everyone, followed by years of clinical trials to prove the safety and efficacy of treatment, it won't do some of us much good. A wonderfully scientific resolution may be for the next generation of MSers, it depends on how things go. Some of us will have to make the best decision we can based on the evidence there is, without waiting for you to pronounce the evidence conclusive.

patientx wrote: Maybe it's the trasnlation [sic] to English. But, on page 395:

None of the controls, including those who had HAV-C, were positive for more than one of the criteria

It goes on to say:

In none of the HAV-C subjects who underwent venographic investigation with negative ultrasound were there any stenotic patterns

There's your 0% in the controls.

The going on to say part is a little weaker in that statement, in effect that some of our ultrasound patients had not more than one criterion (see, we are trying to treat, but screening first is *safer*) and of those, none had stenotic patterns.

On page 394:

Sixty-five subjects with MS fulfilling the ECD-TCCS screening criteria...underwent selective catheterism

The study consisted of 65 patients with CDMS, so there's your 100%.

This by itself only says that 65 patients screened positive. I think the catheter was used on them to really diagnose the problems.

1eye wrote:I'll bet you $1M I can detect it better for example than someone who insists on using the Valsalva maneuver. Even Zamboni's publications nixed that one. (So, ok, first you learn to read.) I can do this with most Doppler Ultrasound machines, and the correct probe. But, not being trained, as an MD, or radiologist, my bet would have to be strictly that.

I would take that bet, because it's obvious you don't read very carefully.

Too bad I didn't make it with you.

I assume you're referring to he Doepp, et al study, where this Valsalva nonsense continues to be perpetuated. If you actually read their paper, you will see that they used a Valsalva test, in addition to Zamboni's other 5 tests. They did this because they suspected Zamboni's team may have been detecting reflux caused by valvular incompetence. Besides, this argument that they were unable to detect CCSVI because they used a Valsalva maneuver makes little sense. Using the Valsalva should have resulted in a higher incidence of reflux, not less.

It's too bad you can't rely on your other results once you have spoiled them.

Maybe you should read things a little more carefully (and review basic math) before making such condescending posts.

.

<shortened url>
more liars or ? Why don't you negs just back away and feel sorry for us from a silent distance? You aren't being the balanced argument that many of you profess. If you feel this ccsvi stuff is beyond your abilities to accept without blah blah blah...leave us be as someone said they were but didn't mean it? A few of you need to soul search...and stop brow beating the non-neg clubbers.
"I do leave you to it. I'm aware and appreciate that anecdotal evidence is good enough as far as a lot of people here are concerned. I've said many times that wishful thinking and hope are wonderful things."
over 5000 posts and he's got more help to give us...do you see any condescension in his written tone? learn to stop this self serving pseudo intellectual nonsense you are pretending is serious concern over something you care about. Find your answers without believing your calling is harassing those of us who don't want your veiled guidance. Let us be and have a beer. Thx

Lyon wrote:

CureIous wrote: So are you insisting it is of no intrinsic value then? Sounds like cart before horse, let's prove it exists before we look for it, so don't charge to learn how to look for it, because it hasn't been "proven" yet that it even exists.

Try to skew it any way you want I know that you darned well know the point and the point is that this situation is unprecedented because never before have researchers had to pay for lessons purportedly needed to replicate a researcher's findings........a researcher who seemingly would like his work positively replicated. This really answers an earlier thread in which I questioned that if Zamboni wants his work replicated, why doesn't he post his methods on the Hillerene website.
.

I understand where you are frustrated. Yes, I hear you. If I may paraphrase, "Zamboni said to replicate his findings, but the how is a secret only he knows for a price", if I understand and am generalizing badly enough.

Actually no, I couldn't read through the wet property references enough to see what you were getting at (precisely), but thanks for clarifying for my pea brain. It still stands to reason that all the great inventors of the world have at one time been amply compensated for their finds, okay not all, most, Tesla comes to mind vs. Edison, but I understand where you are coming from now.

This thing is ALL about the imaging, without that both pro and con don't have much of a leg to stand on, or refute with depending on their POV.

Which is why I think it's important to have all modalities on the table and not be 100% UT, MRV, Veno ,IVUS, but I wonder how the Simka's of the world are able to select patients for treatment based mostly upon UT in the first place? Must be something there to see.. I must proffer that the demand for proper instruction is high, precisely because the results are all over the map, not just in studies, but in real life dx/treatment situations. They ARE in fact seeing things with UT, detecting abnormalities, I've heard plenty of stories of just that coming from MS patients who've went out on their own. And plenty from the MRV crowd, and the Veno/IVUS contigent.

But for study purposes, and to cover the greatest number the fastest and with minimal invasion and cost, UT is going to be the only way that happens. I see no workshops for proper MRV assessments for instance.

So it stands to reason in my mind that UT for the foreseeable future, but hopefully not indefinitely, will be the lightning rod of the imaging controversy, as it is HIGHLY operator dependent, and always will be. Did not Zamboni (if I recall correctly) state that many hundreds of NORMALLY functioning patients and/or venous systems need to be imaged in this manner before attempting to adequately assess possible CCSVI abnormalities? This appears to be a "shortcut to the chase" by offering his training on just that.

What happens if he puts that info you want in the public arena, it is then taken, used incorrectly in a rushed manner, and found to be lacking in substance? Then what? Bell's already rung.

I have a sneaky suspicion and/or high degree of certainty (opinion only) that having that training by the person who invented the testing protocol will yield similiar results when that technician applies that same knowledge in a proper manner in his/her home court.

I don't care a whit how much money he does, or does not make from this. I never asked my neuro on the way in, "I'll be your patient, provided you only made x dollars from the pharmas and not a dime more". That's spurious at best. Who cares? I don't.

Now about the 100/0 part, I don't know, that's hard to say and is highly speculative what would have happened with less than 100/0, but once again in my opinion, this goes to timing, so the 100/0 part you mention, did that come out before, or after Stanford got the ball rolling at the behest of our Cheerleader? I'm presuming you mean the "prospective open label study paper" which came out in December 2009? I was already planning my one year follow up at that point. Cheerleader went to Stanford when the only info online about Zamboni was by and large in Italian. Hardly a furor if I must say.

I can take a guess that Simka would still be treating whether the internet cared or not, which is where the vast majority (prior to the media coverage) of the discussion was taking place, so frankly, the assertion that "without the 100/0 nobody would care a whit about this Zamboni guy" is ridiculous prima facie.

And it is drastically more interesting and compelling than bee stings or whatever drug you want to name, precisely because people can SEE what is wrong (with their veins) and they KNOW there is a good possibility that pathology can be fixed. Interest? Heck yeah.

I knew about the training a long time ago, where you been? (Seriously)

And why are you picking on youtubers? I don't see anyone offering that up as scientific evidence. I didn't go to Stanford because of the overwhelming scientific evidence. I went because it made sense to me, not because I thought that my MS or CCSVI could be definitively and categorically put into a test tube and tested thumbs up or down. Got broke veins, fix em. Rest of the chips can fall wherever they like.

Now Mr. Lyon, for the rest of your post, yes, we should have categorically and systematically step by step broken this thing down from the git go.

But, the fly in the ointment here, and the part that is driving a substantial portion of this, is the patient in dire need, of which I am not one, nor was I ever one (stipulated), it's the "one relapse from a wheelchair" person that is hard to walk up to them and say, "just wait 5 years until the science catches up". For the rest, yes, they *could* theoretically wait until such a time, but oh boy, that's not for me to tell ANYONE what to do with their situation.

So once again, we are attempting to dovetail the individual in with the litmus strip and it just doesn't have a very good fit...

So it comes down to individual choice, based on whatever knowledge they may glean from whatever sources.

Okay I broke my keyboard dude.

scorpion wrote:How are we ever going to get to the bottom of this???

I share your frustration friend as i am sure everybody does.
Patience. Zamboni is on the right track, believe me. Even if the "liberation" treatment doesn't work for everyone (which i am pretty sure it is the case) it works for many. The rest will try something else.

The real issue here is that autoimmunity's cause is under the microscope.
And if Zamboni has already seen things no one else knows about yet, it is critical that this knowledge spreads in the speed of light. We are all able to count MS lesions. It's time to see what else is going on. And if we don't benefit as much as we would like, remember: future patients might will.

Zamboni is not in for the money. Let's not forget why he dove into this. If he makes money down the road, well...let's just say that others get filthy rich by selling poisons.

I couldn't imagine that this post would raise red flags. But then again, the red flags were raised by people that are well known about their ability to find targets in the void.

I even suspected that there won't be many participants in Zamboni's course. Not because of the money. The cost is ridiculous and not worth mentioning. But it takes place in Italy and it has a long duration. Hopefully i am all wrong and his classes will be packed with "students".

It SHOULD BE OBVIOUS BY NOW that Zamboni is not begging for customers. He knows that his name is linked strongly with something that may be the medical breakthrough of the century and he is busy researching further. He also knows that at the end, EVERYONE will follow, let alone the fact that he has called for cooperation one million times already. It is US that are begging for more open minded and better health care professionals and the way I see it, we should at least welcome this course. This is purely a kind offering of knowledge in unknown territory.

So, if WE know someone who may be wiling to learn more about the future of one of the most notorious diseases we should give him a notice about that course.

IT IS ALWAYS EASY TO SHOOT ONE WHO SHOWS HIS FACE. You can always blame Zamboni if it turns out that he was wrong. Thankfully his face goes with a pair.