MS expert questions CCSVI...

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

Postby Lyon » Wed Nov 25, 2009 8:22 pm

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Postby MrSuccess » Wed Nov 25, 2009 8:53 pm

Bob ....normally your posts are lucid .. :roll: ...not your latest effort .

As always ...I ask the hard questions ...questions timid lurkers want to ask but don't ....for fear of being labeled a troll

I have no such fear. :twisted:

You are missing the point [ are you drinking ? :wink: ]

Dr. Freedman has spoken poorly of Dr. Zamboni ...without hearing him out.

Bobby , old sport ... you have pretty good internet research skill's ...do yourself a favor and research good old Dr. Freedman and his failed MS treatment , resulting in someones death.

Or are you like Freedman and offer unresearched opinions ?


As to your comment about Chris .....Hmmmm ....I like Chris ...he is a pioneer and I admire him . I hope Dr. Dake slips him to the head of the line ...he deserves it for all his efforts and great MS finds.


Okay , I'm going back under my bridge and await my next victim ...... :twisted:




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Postby MrSuccess » Wed Nov 25, 2009 9:23 pm

Bob , let me do your homework for you .....

From the OHRI - Ottawa Hospital Research Institute

Bone Marrow - MS transplants - Neurologist Mark Freedman :

[/b]There has been a casualty. One patient, a 40 year old man , died of hepatic insufficiency two months after recieving the transplant

And this
Hypercritical ass had the nerve to question the safety aspect of Dr. Zamboni's CCSVI research to his face . Have you tried this on mice ? :wink:

I love Dr. Z'ds reply : I'm not a mouse doctor .






Back under the bridge ..........





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Postby Lyon » Wed Nov 25, 2009 9:44 pm

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Postby Lyon » Wed Nov 25, 2009 9:48 pm

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Postby chrishasms » Wed Nov 25, 2009 11:46 pm

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Postby sbr487 » Thu Nov 26, 2009 1:58 am

Lot of highly paying neuros and researchers live in their own world. It really hurts their ego when someone tells them that the solution was very simple if someone had ability to think out of the box.
These are the people who will shamelessly gang up and attack anyone proposing an idea who does not fall in their domain. They will also get support from pharmas who have big lobbying power. If Dr.Z is correct, I think lot of people will have their egos getting busted big time ...
Change is a very powerful thing. Those who dont want to accept and move on will get buried. History is full of such instances ...
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Postby beyondms » Thu Nov 26, 2009 12:23 pm

cheerleader wrote: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


And my buddy's response:

"This is not the paper I am looking for. I already read it yesterday and as I mentioned it probably establishes the association between vein kinks and MS but not necessarily a causal one. For example, the kinks could be a consequence of MS and not precede MS.

I am looking for the article that describes the series of patients he treated with stenting with baseline description of the MS patients and the type of MS they had at the time they were stented.

Out of curiosity, has anyone commented on the possibility that the kinks are due to subtle neck muscle spasm/tightening surrounding the neck veins (which are easily collapseable compared to arteries)?

We know that spasm occurs in other parts of the body in MS patients more frequently than non MS patients. Probably would be good to study some patients multiple times to see if kinks are static or dynamic.

I really hope that there is something here that will help you and others but I still advise against you getting treated with stents at this point unless you do it in the context of being a participant in a proper placebo controlled randomized trial or until a trial demonstrates 1) safety and 2) benefit compared to a control arm. My guess is this trial is not far away."
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Postby ozarkcanoer » Thu Nov 26, 2009 6:14 pm

Just some food for thought on balloons vs stents. I have an appointment with an interventional radiologist on Dec 14th (professor at Washington University). His nurse told me yesterday that balloon angioplasty is safer than using stents.
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Postby beyondms » Sun Nov 29, 2009 9:07 am

More comments from my buddy, a cardiologist at Stanford:

" I looked over the paper. I think it confirms the strong association between kinks in the neck veins and MS but the proof that stenting the neck veins improves MS is tenuous unfortunately.

By reporting only on the MS subjects that were in a remitting and relapsing phase (and some while they were having an attack), you can't conclude whether the stenting did anything because the natural history of MS at this stage is for it to improve over the 1-2 year follow up period.

In the absence of a (randomized to no treatment) control group with sham procedure, you have no idea what the rate of relapse would have been in the same group if they were not stented.

To try and be a little more convincing, he compared rate of relapse in his subjects post stenting to a rate of relapse in historical controls (year before treatment) but this comparison is known to be suboptimal. It is not convincing enough for me.

Fatigue improvement also not convincing as this subjective measure is even more susceptible to placebo effects (or perceived benefit effect of a procedure).

I would wait for the trial. If it turns out negative, my guess is that all of this venous distortion is secondary to MS and not the other way around."

My comments: As I stated before, this procedure may be revolutionary but it needs to be tested. At the very least, MS patients should test their veins through and ultrasound or CT venogram (which is better since blockage in an ultrasound can be due to spasm).

Once you have this information, you can then decide whether or not you want to proceed with the procedure. The drawback is that it is untested and therefore it will cost you. As with any procedure, there are also risks that need to be assessed. But if you do not have access to drug therapy, this option may be worth investigating.[/b]
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Postby ozarkcanoer » Sun Nov 29, 2009 9:50 am

beyondms... below I have pasted information from cheerleader. I know this is anecdotal, but cheerleader is an insider. I believe what she says is true. As Dr Zamboni as a true scientist urges everyone : EVIDENCE, EVIDENCE, EVIDENCE :

-----

1. Animal models are now being pursued at American Universities

2. Dr. Zamboni studied Sardinian children who had jugular venous malformations (“So-Called Primary Venous Aneurysms” pub.1990) 20 years later, 90% of this group had CDMS. MS takes many years to develop. Just as Budd Chiari (a venous disease of the liver) is diagnosed in young adults. Shall we wait another 20 years?

3. Every MS patient tested has some form of jugular venous occlusion and reflux- in the US, Poland and Italy. Papers are now being accepted and in press. We need more studies. Today. Thank you-

-----

As for an individual patient making the decision for The Liberation Treatment or not ? This decision should be between the patient and his/her doctor.
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Postby TFau » Sun Nov 29, 2009 9:52 am

Wow, this is the most rational critique of Dr. Zamboni's work that I've seen, although I haven't been looking too hard.

RE his comments about the anecdotal perceived benefit in fatigue that patients have reported. Since many of these patients have tried many other treaments before stenting, and possibly have had placebo relief of their fatigue before, wouldn't they be aware of the difference? I know, someone may say "but they really believed that this would work better than the other treatments". It just seems from the anecdotal reports on this forum that the fatigue relief was so profound that it would be quite doubtful that it's a placebo effect. In any case, if it's a placebo affect that is still working 6 months out, bring it on!
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Postby MS_mama » Sun Nov 29, 2009 12:28 pm

beyondms wrote:
In the absence of a (randomized to no treatment) control group with sham procedure, you have no idea what the rate of relapse would have been in the same group if they were not stented.


just to be clear, since he is talking about Zamboni's paper, it was a balloon angioplasty only, not stents. Dr. Dake uses stents.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby mrhodes40 » Sun Nov 29, 2009 2:45 pm

this guys seems rational and it is a good comment. I especially like his compassionate offering that it may depend on what other therapy options you have whether to participate in this or not. I really agree with that.

I like that he seems to offer that the vein issue seems to be seen but that replication is needed (Jacobs will announce soon apparently, that should solidify that aspect) I wonder how his assessment might change after the Jacobs results are out assuming a good result?

In the absence of a (randomized to no treatment) control group with sham procedure, you have no idea what the rate of relapse would have been in the same group if they were not stented.


At the risk of offering this again, such a statement is absolutely valid, but as we have seen, it depends what the thing being tested is as to whether people get all up in arms about that all important random control group.

No ASCT trial was ever random or controlled. I do not see people rushing to the podium to demand random trials be done. Maybe they could give people something that would make them nauseous but not be the actual chemo maybe?? That would be no worse than putting people through sham surgery would it? Sham ASCT? No one even offers it though for the obvious reason that to hurt people with no potential gain to them as human beings for the sake of curiosity and debate renamed "science" is unethical.

there have to be other scientific ways to demonstrate this without resorting to sham surgery. Dr Haacke's way seems promising.

I wonder, beyond, what your friend would say with regards to this hypothetical question:

Imagine for a moment that a diseased kidney or liver is shown to have gross stenosis in its main vein as an incidental finding when doing another diagnostic. You don't know what this has to do with the disease, you're not sure, but the occlusion is clear. Do you assume it is benign? Or do you at least consider treating it on the principle that the circulation should be restored as a basic necessity for adequately healthy tissue.

If you contend that not knowing whether this caused the disease is the key issue to consider rather than resorting to "basic principles", is it really reasonable to assume the diseased organ can tolerate this circulatory problem and heal from the mentioned disease?

And if he feels the brain is different why would that be?

I am honestly asking your friend out of curiosity. It is nice of him to share his thoughts with us through you. Thank you to both of you
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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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Postby BBE » Sun Nov 29, 2009 3:53 pm

2. Dr. Zamboni studied Sardinian children who had jugular venous malformations (“So-Called Primary Venous Aneurysms” pub.1990) 20 years later, 90% of this group had CDMS. MS takes many years to develop. Just as Budd Chiari (a venous disease of the liver) is diagnosed in young adults. Shall we wait another 20 years?


I have a question regarding that. What exactly in MS takes many years to develop? Why does it take 20 years of stenosis for the first symptoms to develop and only a very short time in case of a restenosis?
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