MS expert questions CCSVI...

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

MS expert questions CCSVI...

Postby beyondms » Wed Nov 25, 2009 10:41 am

11-25-2009: The Ottawa Citizen reports that MS expert downplays Italian surgeon’s treatment. With all due respect to Dr. Freedman, I think MS patients have absolutely nothing to lose by testing themselves to see if indeed they have partially or completely blocked veins. I come from a family of doctors and while I am cautious, the cost benefit analysis suggests that you have nothing to lose by testing yourself. These doctors should disclose their research grants from Big Pharma!


Link to article:

http://www.ottawacitizen.com/health/exp ... story.html
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Postby MrSuccess » Wed Nov 25, 2009 11:29 am

Consider this : Dr. Freedman advocates nuking your immune system . Has he not had his research halted due to patient death ?

Mice do not get MS .

I once held Dr. Freedman in high regard. I no longer hold this opinion. :evil:


Dr. Zamboni now has a bullseye on his back ....and the likes of Freedman are taking aim.....

We have to be sure to guard Dr. Zamboni 's back. :idea:




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Postby AndrewKFletcher » Wed Nov 25, 2009 11:45 am

There will be many more lining up their sights on Zamboni's back.

Franz Schelling knows only too well.


Lucrative neuro jobs will be on the line and those that refuse to change direction will feel threatened and confused when the fight or flight reaction is presented to them instead of the patients.
Poetic justice?

It is far too early for anyone to be hurling stones.

Time alone will tell who is correct.
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Postby MrSuccess » Wed Nov 25, 2009 11:55 am

And I might add ...those living in glass houses - Freedman - ought not throw stones ........... age old sound advice ............... :evil:


Let us hope Jamie ....cannot scare up the airfare to Ottawa...... :wink:




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Postby mrhodes40 » Wed Nov 25, 2009 2:08 pm

when the fight or flight reaction is presented to them instead of the patients
I agree completely I have said before that the neurologist who hears of this is going to feel shock that could be akin to a diagnosis .

I mean, imagine this:

you are in business for yourself you have staff to pay.

1/4th of your patients are MSers, the rest are migraineurs, epilepsy parkinsons etc.

Of these diseases, the one you can do new rewarding treatments for in your office is MS. Maybe you invested in an IV chair and materials so you can do Tysabri or Novantrone infusions in office. Maybe you hired a nurse to do it. This is one source of revenue to keep the doors open. Maybe you administer enough Tysabri that you are a paid expert that gives talks to new patients to assure them that pharmaceutical medicine has the answer.

These people are in a world where MS is treatable, administering these treatments is part of their business model, and to suddenly have them gone is going to be terrible for them on many fronts. i wouldn't assume someone who disagrees with this research on substantive grounds at this point is being disingenuous at all, but it bears keeping in mind that "shock and disbelief" may be an understatement and may indice an unfairly negative view of the work.

I mean c'mon. Zamboni didn't say that surgery cures MS at all, he was very cautious, appropriately so. That is patently misrepresentation of his interview designed to mark him as charletan and to diminish the peer reviewed nature of the work done so far.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Dr. Freedman

Postby paulmur » Wed Nov 25, 2009 3:27 pm

I would be disappointed if Dr. Freedman's view was not critical. He is right on all counts. Don't get me wrong. I'm as excited as all of you. But the scientific community will demand empirical evidence in the formal sense of the term. For whatever the motivation, let them hit us with everything but the kitchen sink. The truth will prevail.

"If his observation stands up to other people being able to reproduce it,” Freedman said, “I think we’re going to have something of interest to chase, but we need to have the supporting evidence before we start reaming out blood vessels and pretending that this is going to cure the disease"

I think that is fair enough!
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Dr. Freedman - financial disclosure

Postby beyondms » Wed Nov 25, 2009 3:35 pm

Financial disclosure: According to a recent paper ( "Magnetic Resonance Imaging Predictors of Conversion to Multiple Sclerosis in the BENEFIT Study"), Dr. Freedman has received honoraria from Bayer Schering Pharma AG, Biogen Idec, Bioms, Teva, Merck-Serono, Novartis, Sanofi-Aventis, and Pfizer and has served as a consultant on steering committees for Bayer Schering Pharma AG, Merck-Serono, Bioms, Sanofi-Aventis, and Novartis.

Doctors who downplay or dismiss this treatment should openly disclose their research grants and affiliations to Big Pharma!
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Postby LR1234 » Wed Nov 25, 2009 3:52 pm

Nice detective work beyond;)
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Postby beyondms » Wed Nov 25, 2009 5:52 pm

A buddy of mine who is a cardiologist at Stanford wrote me this:

The honoraria does not mean much. He is helping the companies who have expertise in developing medicines. They need the clinical expertise to compliment their own expertise in drug development. Honoraria disclosures should not be automatically interpreted as conflict of interest especially if he does not own stock. The fact that he is being paid by so many Pharma companies for his advice may actually speak to how good of a consultant he is.

I don't think Freedman wants all therapies unrelated to drugs to fail. I think that is unfair statement. I agree with his statement that Zamboni's observations need to be independently reproduced especially the data related to treatment with stenting of the veins. It looks like to me that the association between narrowed veins and MS is so strong in his initial paper and should be easily replicated but other groups but still too early to tell whether this is the root cause of disease and that stenting cures it.

Can you forward to me the data Zamboni presented regarding treatment of 65 subjects with stenting? Did he treat subjects who were predominantly in the relapsing remitting phase of MS? If he did, then it is difficult to pass judgment on his therapy despite his spectacular results and I would probably not undergo this procedure until a double blind study demonstrates 1) safety and 2) benefit. One must not forget that a blockage in the neck veins due to thrombosis of a stent can cause serious problems. It is much easier for a stent in a vein to clot than a stent in an artery.

The good news is that it looks like the trial is probably easy to do and can be done quickly and there are research dollars set aside for it already in Canada (research competition with deadline end of jan).

As with any new treatment, discuss it with your physician and carefully weigh the pros and cons.[quote][/quote]
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Postby MrSuccess » Wed Nov 25, 2009 6:34 pm

Dr. Mouse had a patient die in one of his Clinical experiments . You can research this if you desire. :cry:

Dr. Zamboni has not. Nor has Dr. Dake.

Our dear friend Holly's passing was not caused by CCSVI intervention.

Holly's sister has confirmed this .


Here is your choice : Have Dr. Mouse fry your immune system then hope your stem cells reboot your immune system. You risk death .......

Or .........

Subject yourself to a angioplasty than seems safe ........and has published results .


I'll wager a lot of cheese on the Zamboni Big Idea.



Sorry Dr. Mouse ..... :evil:





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Postby chrishasms » Wed Nov 25, 2009 7:38 pm

123
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Postby cheerleader » Wed Nov 25, 2009 7:47 pm

beyondms wrote:A buddy of mine who is a cardiologist at Stanford wrote me this:

Can you forward to me the data Zamboni presented regarding treatment of 65 subjects with stenting? Did he treat subjects who were predominantly in the relapsing remitting phase of MS? If he did, then it is difficult to pass judgment on his therapy despite his spectacular results and I would probably not undergo this procedure until a double blind study demonstrates 1) safety and 2) benefit. One must not forget that a blockage in the neck veins due to thrombosis of a stent can cause serious problems. It is much easier for a stent in a vein to clot than a stent in an artery.

The good news is that it looks like the trial is probably easy to do and can be done quickly and there are research dollars set aside for it already in Canada (research competition with deadline end of jan).

As with any new treatment, discuss it with your physician and carefully weigh the pros and cons.


Hey beyond...your buddy surely knows Dr. Dake. He should sit down with him and discuss. The venous stents place in MSers so far have endothelialized really well. My hubby's had the hardest time and needed two balloonings, but it wasn't due to thrombosis. MSers are not looking thrombotic. So that "clot" comment isn't true so far. Yes, in Budd Chiari or other thrombotic venous disease, it can be a problem. What Dr. Dake has seen in jugular veins crimped closed or compressed by exterior issues, tight lumen, tight necks, etc.....MSers blood is fine, no clotting issues. So that's a non-issue.

Here's Zamboni's paper:
http://jnnp.bmj.com/content/80/4/392.full
This group included 35 patients with a relapsing-remitting (RR) clinical course, 20 with secondary progressive (SP), and 10 with primary progressive (PP) course.21


Marie has all of the research papers available on the research sticky-
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Postby Lyon » Wed Nov 25, 2009 8:02 pm

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Postby MrSuccess » Wed Nov 25, 2009 8:08 pm

Chris , I remember your story. No offense intended. Did anyone perish at the JH rev. reboot procedures ? I hope not. You always speak highly of Dr.Kerr . It seems from your Kerr reports that Dr. K would not go shooting his mouth off on some other research until having reviewed said information.

This is not the case with Freedman.

Unless Dr. Freedman has inside information about Zamboni's findings [ still not published ..as of today ] , Freedman has only his own opinions and research to base his belief on.

When you research Freedmans failed experiment ...you will read that ..in his own words ..we don't know why this works ' Hello ?

And here sit's this critic , attacking Zamboni's research , research that shouts out ....this is why it works :idea:

Again , I point out that Freedman's research was halted ...due to a patient death .

And he's preaching caution about CCSVI ? The gall of this guy.........


Yeah , I got Zamboni's back :twisted:







Drink'in again .....I'm drink'in again ..........



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Postby cheerleader » Wed Nov 25, 2009 8:19 pm

Bob- Dr. Dake tests d-dimer, inr rates, etc. before even considering a stent implantation. So far, out of the 65 patients he's seen, thrombosis hasn't been an issue. (We were just discussing this very point) It's been cramped real estate in the neck or congenital deformities that create the stenosis. But you're right...thrombosis could be and issue for some in the future. I stand corrected-
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