“Zamboni’s theory seems sound to me”

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: “Zamboni’s theory seems sound to me”

Postby L » Mon Sep 20, 2010 3:59 am

NHE wrote:The use of the word liberation by Zamboni is meant that his procedure liberates the blood flow. As far as I know, it has nothing to do with "liberating people from MS."


An extra bit of trivia - it was someone in his team and not the man himself who first used the term to describe the procedure.
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Postby codefellow » Mon Sep 20, 2010 6:30 am

I thought I read somewhere (please do not ask me to try to find it), that the word "Liberation" came about as an result of trying to use English to describe a complicated medical procedure that was provided by Italians. IOW, it is doubtful that ANYONE on Zamboni's team actually used the word 'Liberation' or if they did, it was just the closest English word they thought described the procedure. The emotional connotations are unfortunate for rational discussion, but pure gold for a journalist.
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Re: “Zamboni’s theory seems sound to me”

Postby scorpion » Mon Sep 20, 2010 8:02 am

NHE wrote:
scorpion wrote:1. 100%, 100%, 100%
2.no blind study to test against placebo effect


Dr. Sclafani has addressed this in his thread. He believes that it is unethical to sedate people to the extent that would be necessary such that they could not tell whether or not they were actually treated. Many people treated for CCSVI have reported that it was obvious when the balloon was being inflated. Sedation would expose people to unnecessary risk. Moreover, simply inserting a catheter into the jugular or azygous vein may clear out some obstruction. There are many types of blockages including a septum, a thin membrane blocking the vein, which could be cleared via a catheter insertion. Moreover, Zamboni's paper states that the doctors evaluating the patients were blinded to an individuals MS status.

3.participants in his study continued to take MS therapy drugs


Pharmaceutical companies do this all the time. Remember Avonex + Tysabri? Copaxone with Revimmune? Copaxone with Novantrone? Anyways, MS/CCSVI may be a disease of chronic immune activation and continuation of DMDs may be prudent to help correct the chronically activated immune system.

4. he went straight to the social media which bypassed any critical review of his research by his peers


False. Zamboni published in peer reviewed science journals well before the rest of us found out about it.

5.to perform the "liberation" procedure at such an early stage in his research was a questionable ethical decision


Really? How else would you suggest he test his hypothesis that restricted blood flow may be a contributing factor to the disease of MS?

6. to operate on his wife was a questionable ethical decision


This has been discussed elsewhere on the forums here at ThisIsMS. Zamboni did not operate on his own wife. Moreover, it may be the case that it's unlikely that he's personally operated on anyone recently. Have you watched the videos of his interviews? If you were paying attention, then you would have noticed something unusual about his hands. In one video he handles a computer mouse as though he were wearing a ski mitten. In another, he moves his hand over to rest it down on his other arm and it appears to be more of a flop type of motion. If you've read about Zamboni, then you may have discovered that he has an unknown (at least to me) neurological condition. Clearly, this seems to be affecting his hands (or at least one of them). Again, I doubt that he operated on his own wife. However, he may have directed the operation. I see no ethical problems with this if that were the case.

7.the word "liberation" should never have been used to describe his surgery. liberation means to be free of. what a misleading term.


The use of the word liberation by Zamboni is meant that his procedure liberates the blood flow. As far as I know, it has nothing to do with "liberating people from MS." I believe that this is common misunderstanding. Even Dr. Andrews, an IR in support of CCSVI treatment and research, makes this error in his video.

NHE
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1.2.If there was no double blinded study than how can the placebo effect just be ignored? I am not trying to argue whether people benefited from the liberation procedure or not I just think as people with MS that is a logical question to be asking. I know the 100% thing has been beaten into the ground but to me this claim threw up red flags imeediately. Again I am not saying it is impossible but I think at the least people with MS should be looking at the number with a great deal of suspicion.
http://www.webmd.com/parkinsons-disease ... ons-effect

3.Correct me if I am wrong, and I am work so I have no time to look it up, but were two treatments not used in combination with each other after both had already gone through clinical trials? For example Avonex had already completed clinical trials and been approved before it was tested in conjunction with Tsysarbi and vice versa.

4. Once again I may be wrong but I remember when CCSVI broke reading articles from Zamboni and his colleagues particpating in numerous interviews with different media sources to "get the word" out about their hypothesis.

5.6. I completly disagree with you on this point. Before Zamboni performed any surgery he needed first to prove that CCSVI actually existed and if so did/does it have anything to do with MS. He is still stuck with trying to prove it exists. Yes I know there are people he has trained and a few others that see blockages in almost all MS patients but according to some of his own trainees these blockages are subjective. Just read how many people on this forum have gone to three different radiologists and gotten three different results. Of course the radiologist that finds the blockages are the ones immediateyl given the accolades but for me I would want to know why this one lone radiologist saw blockages no one else could see. Anyway I guess we will just disagree on this point.

7. I stand corrected if Zamboni did not name his procedure the "liberation procedure". However zamboni had to know what that term triggered in people's minds. Maybe I am wrong in assuming this but when people post they are going to get "liberated" I do not think they are referring to liberating the blood flow to their brain.

Once again I am not saying that Zamboni may not be on to something and this is just one person's(me) perspective on CCSVI. I want Zamboni to prove to other researchers how he identifies CCSVI in people with MS but I am tired of hearing excuse after excuse from Embry and others when he fails to do it.
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Re: “Zamboni’s theory seems sound to me”

Postby 1eye » Mon Sep 20, 2010 9:19 am

scorpion wrote:
3.Correct me if I am wrong, and I am work so I have no time to look it up, but were two treatments not used in combination with each other after both had already gone through clinical trials? For example Avonex had already completed clinical trials and been approved before it was tested in conjunction with Tsysarbi and vice versa.



But if *my* doctor had not been so anal about testing more than one thing at a time my treatment might have benefited from the synergy now known to exist between Copaxone and Mitoxantrone.

The guy wanted to avoid controversy. Change two things at once and you are left not knowing what did it. But he was so confident of the treatment he left everything else as it was, and not one of his patients cried foul, or said their DMD did it. In fact most patients have little to no confidence that their DMD actually does anything, especially the Interferons. They take them out of fear, because they have been told the injections might be preventing something (it happens anyway).

Tysabri was tested in two simultaneous trials, one of which had Avonex added to it (probably the patients were already on Avonex already). The deaths came first in the combination, so it was decided that Avonex should not be combined with it (a little late), and probably no other immune suppression either.

Are you going to tell me that he should not have left patients on their DMDs because they might have died from the combination of Liberation and DMDs?

5.6. I completly disagree with you on this point. Before Zamboni performed any surgery he needed first to prove that CCSVI actually existed and if so did/does it have anything to do with MS.


I will not honour that with a complete quotation. He is not stuck anywhere.

He is not still stuck trying to prove it exists. That is up to his qualified peers, and they are doing far more than is needed because of a few whiny but vocal neurologists (who are not doing a great service by participating in trial-by-media).

according to some of his own trainees these blockages are subjective. Just read how many people on this forum have gone to three different radiologists and gotten three different results.


Just because a thing is new does not mean it shouldn't be tried. Your results may vary, because it is congenital most of the time and everyone is different.

Besides, the list of things to try was getting longer (except for the progressive cases), and the story less believable with each.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby zap » Mon Sep 20, 2010 12:26 pm

L wrote:I thought that because his grasp of English fluctuated so wildly. Some of the spelling mistakes didn't seem too authentic to me either. Like someone pretending not to be proficient


you're not the only one, FWIW
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Postby AMcG » Mon Sep 20, 2010 2:14 pm

I am certainly not getting involved in this prolonged exchange but it might help to defuse at least part of the antipathy to clarify some of the language used.

In the Anglo-Saxon world words with Latin derivations tend to sound grandiose. In Italian obviously most words have Latin derivations. ‘Liberazione’ can be used to mean ‘Liberation’ but it is also the everyday Italian word for ‘freeing.’ If you type ‘freeing the blood’ into Babel fish you get ‘liberazione dell’anima.’ There is no necessity to read into the Italian ‘Liberazione’ the same meaning as the English ‘Liberation.’
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Postby L » Mon Sep 20, 2010 2:34 pm

Malden wrote:Btw, what's your opinion on brain-barrel analogy?


Sorry, I didn't notice this before. As analogies go it isn't bad. The blocked road/diversion/blocked roads cleared/collateral routes empty again analogy appealed to me as well. I'm not interested in the emperors new clothes analogy. The stomach ulcer/bacteria/nobel prize analogy worked for me though. So did the blocked lavatory analogy as introduced in the CCSVI Sardinia Symposium.

But, all in all, I still have a soft spot for the omelette recipe analogy.

By the way, what is your native language Malden, if you don't mind my asking?
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Postby 1eye » Mon Sep 20, 2010 6:01 pm

Re the Liberation Analogy -- I think it is apt, because of what the symptoms of CCSVI do, especially to us older, more disabled patients. I am trapped in what might as well be a jail. I am under house-arrest for sure. I agree with the woman from the UK who scoffed when they threatened her with jail, for marijuana use. Put me in jail? You're a bit late. So yes, the procedure will liberate. And no, I will not stop calling it Liberation. Even if I never play guitar again, or walk again.

If you have a problem with that, I suggest you are much too sensitive. It should not matter what you call it. It is just a word. Take 2 of these and call me in the morning.
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Postby Cece » Mon Sep 20, 2010 7:52 pm

Jugular wrote:
jimmylegs wrote:FYI to all, in many cases a member can have a long list of IP addresses associated with their TIMS usage... myself included!
True, true. But what you look for is different accounts using the same IP address, especially within close proximity. It can happen without it being the same person (e.g. two users using the same public WIFI), but not likely.

I think, even if it is unlikely, because it cannot be proven 100% it would be wrong to act on it.

As for the Liberation Procedure name, I suppose it is unfortunate that there was the translation error. It makes it sound more scammy, because it promises so much.
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Postby concerned » Mon Sep 20, 2010 10:08 pm

L wrote: The stomach ulcer/bacteria/nobel prize analogy worked for me though.


How 'bout the mental illness/lobotomy/nobel prize analogy?

EDIT: Don't forget that antibiotics are now a last resort treatment for ulcers as things deep in the gut are hard to treat with antibiotics and incomplete treatment may lead to antibiotic resistant strains of ulcer bacteria, and also that your immune system doesn't work in your gut, which relies on bacteria to maintain order, and antibiotic treatment kills that bacteria.

The preferred first line treatment, I believe, is anti-histamines that block stomach acid production, like zantac and prevacid and stuff like that.

Antibiotics are certainly a double-edged sword, as are run-on sentences.
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Re: stomach acid and ulcers

Postby NHE » Mon Sep 20, 2010 11:33 pm

concerned wrote:The preferred first line treatment, I believe, is anti-histamines that block stomach acid production, like zantac and prevacid and stuff like that.


Zantac is an antihistamine. However, prevacid is a proton pump inhibitor.

Zantac: The active ingredient in Zantac is ranitidine hydrochloride (HCl), USP, a histamine H2-receptor antagonist.

Prevacid: Generic Name: lansoprazole, Drug Class and Mechanism: Lansoprazole is in a class of drugs called proton pump inhibitors (PPI) which block the production of acid by the stomach.
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Postby malden » Tue Sep 21, 2010 12:06 am

L wrote:...By the way, what is your native language M, if you don't mind my asking?


No, I don't mind. My first nativ language was macedonian and the second one is croatian. And here is my Flickr account:
http://www.flickr.com/photos/malden_dj/collections/
This avatar here, on the left, (tornado lightning) is my catch :)

Best regards, M.
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Postby Johnson » Tue Sep 21, 2010 1:04 am

zap wrote:
L wrote:I thought that because his grasp of English fluctuated so wildly. Some of the spelling mistakes didn't seem too authentic to me either. Like someone pretending not to be proficient


you're not the only one, FWIW
Check out his www.

Nice shots Malden. The figures in the caves are freaky. Is the Alexander V yours?
My name is not really Johnson. MSed up since 1993
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Postby malden » Tue Sep 21, 2010 1:44 am

Johnson wrote:
...Is the Alexander V yours?


Sorry... out of topic ;)
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Postby Johnson » Tue Sep 21, 2010 2:52 am

Malden wrote:
Johnson wrote:
...Is the Alexander V yours?


Sorry... out of topic ;)
Pshaw!
My name is not really Johnson. MSed up since 1993
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