advice from ZAMBONI and Zivadinov

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

Postby sbr487 » Thu Apr 15, 2010 6:54 am

Dr. Zamboni says that neuros should offer this treatment for patients who have not responsed to any other treatment.

I DONT KNOW WHY BUT Dr. Zamboni HAS REALLY TONED DOWN A LOT
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Postby sbr487 » Thu Apr 15, 2010 6:55 am

To be complete:

Dr. Zamboni says that neuros should offer this treatment for patients who have not responsed to any other treatment on compassionate ground. He really seems to be begging ...

I DONT KNOW WHY BUT Dr. Zamboni HAS REALLY TONED DOWN A LOT
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Postby zap » Thu Apr 15, 2010 7:14 am

AMcG wrote:I watched this too and it was obvious that the statements made relating to safety would be the ones most reported. Zamboni and Zivadinov obviously could not say anything else in public but that whatever is done needs to be safe. But they both made a distinction between research and practice. They were reporting research (and therefore had their 'scientists' hat on) Practitioners must make decisions about specific patients' treatment. Zamboni did not say CCSVI is not proven quite the opposite. CCSVI is now on record as a vascular condition and he pointed out that this was validated by the largest authority in the world. He also said that a correlation with MS was proven: "Proved strong association with mechanism of the disease" (his words). He did not retract anything that he has said before and seemed very upbeat about the progress already made and excited about the studies currently underway. I would say the same about Zivadinov. Zamboni included Simka and Mahmoods results in his presentation so he clearly cannot believe that those results were from 'unethical' research. This show was obviously put on by the MS Society to try and slow down the tide of people getting the procedure done. Obviously Zamboni and Zivadinov could not decline a request to speak. Equally obviously they could not refuse to endorse safe procedures. In fact they genuinely seemed concerned that people should not take unnecessary risks. They do care. But they both left immediately after which may say something. I don't think either Zamboni or Zivadinov are any less convinced about CCSVI and it's treatment. Their body language was excellent and Zamboni was very combative (in his own quiet way) when challenged by a questioner in the audience. I really enjoyed that bit. Their basic message was that treatment should only be given as part of a study which has ethical oversight. Zivadinov said current doctors doing procedures should get IRB approval and do it under supervision. Both Zamboni and Zivadinov emphasized the difficult balance between patients needs/rights and legitimate research and they both said that we should be looking at the symptomatology of people who have had treatment and a register of people who have had the treatment was being created for that purpose. Zamboni also said that patients in extreme positions facing an aggressive form of MS could be treated on compassionate grounds. In my mind they came as near as they could to saying we know you can make your own decisions but do it carefully. That's all.


Well put.

I found it interesting how they could write a huge article about this issue without even mentioning the rest of what was said on the subject.
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IR comments

Postby Rosegirl » Thu Apr 15, 2010 9:28 am

I wonder why they didn't have an interventional radiologist (IR) who has actually done a liberation procedure. Why did they settle for someone who has merely spoken to Dr. Dake?

Where were Dake, Simka or Sclafani?
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Postby LR1234 » Thu Apr 15, 2010 9:34 am

Dake and Simka both endorsing stents and it seems Zamboni wants to get away from this at the moment as it could hurt the CCSVI concept due to risks.
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Postby Lyon » Thu Apr 15, 2010 9:36 am

.
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Postby jay123 » Thu Apr 15, 2010 9:54 am

LR1234 wrote:Dake and Simka both endorsing stents and it seems Zamboni wants to get away from this at the moment as it could hurt the CCSVI concept due to risks.


Not saying who is right, but Zamboni has never endorsed stents, he is not "getting away from them".
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Postby sbr487 » Thu Apr 15, 2010 9:56 am

Lyon wrote:I guess only Zamboni knows his reasoning but I suspect that when you're dealing with a group of people who are reluctant to accept something and in power and you are aware that appeals to them are going to do no good, you attempt to talk them into utilizing your idea in situations when nothing else works.

Hopefully they will find good results, but even if they don't at the very least you've involved them, which is a huge first step.

sbr487 wrote:To be complete:

Dr. Zamboni says that neuros should offer this treatment for patients who have not responsed to any other treatment on compassionate ground. He really seems to be begging ...

I DONT KNOW WHY BUT Dr. Zamboni HAS REALLY TONED DOWN A LOT


Lyon,

if Dr. Zamboni believes in his theory then he should continue with diluting his stand, because hypocrites like Freedman etc. are waiting to eat CCSVI as soon as they can if they get a chance ... remember it was neuro community who worked overtime to defame CCSVi and people who stand for it, even without studying it.
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Postby ikulo » Thu Apr 15, 2010 9:57 am

Dr. Z's research achieved publicity, which is an important first step. CCSVI can no longer be ignored. However, now it is time for Dr. Z to move CCSVI along its proper scientific channels to satisfy the mainstream scientific community.

Lyon wrote:I guess only Zamboni knows his reasoning but I suspect that when you're dealing with a group of people who are reluctant to accept something and in power and you are aware that appeals to them are going to do no good, you attempt to talk them into utilizing your idea in situations when nothing else works.

Hopefully they will find good results, but even if they don't at the very least you've involved them, which is a huge first step.

sbr487 wrote:To be complete:

Dr. Zamboni says that neuros should offer this treatment for patients who have not responsed to any other treatment on compassionate ground. He really seems to be begging ...

I DONT KNOW WHY BUT Dr. Zamboni HAS REALLY TONED DOWN A LOT
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Postby Lyon » Thu Apr 15, 2010 10:14 am

.
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Postby scorpion » Thu Apr 15, 2010 10:27 am

Well said ikulo. Although I believe that there is always going to people on this board who will see a conspiracy around every corner, most of us will accept whatever findings will be presented over the next couple of years. People have pushed hard to get CCSVI into the mainstream scientific community. I just hope that most people heed Zamboni's advice and wait until this thing plays out but as many people have stated if the procedure is being offered it is the patient's choice whether they accept the risks. My only question is since NO ONE knows the long term risks of the treatment or if the treatment is even effective are the "surgeons" performing this procedure acting in an ethical manner?
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Postby MS_mama » Thu Apr 15, 2010 10:36 am

Lyon wrote:I guess only Zamboni knows his reasoning but I suspect that when you're dealing with a group of people who are reluctant to accept something and in power and you are aware that appeals to them are going to do no good, you attempt to talk them into utilizing your idea in situations when nothing else works.


Also, Neurologists will sometimes use other off-label therapies (like various forms of chemo) when the FDA approved therapies don't work. From that perspective, a venous angioplasty is remarkably safer than trying chemo. And yet the first approach (off label drugs if nothing works) is more clinically accepted than the second (angioplasty if nothing works).

I wonder if a removal of all of this discussion from the realm of MS temporarily would do the issue more service. In other words, rather than arguing with neurology as to what the effects of CCSVI are, let's look at this from a purely vascular view and find out what effects, neurological or not, occur when treatment is done. Also I wish there was more input from a vascular expertise point of view as to what are the harms of occluded veins. A neurologist would be completely incapable of answering such a question and therefore is unqualified to unilaterally tell a patient not to seek diagnosis and treatment for CCSVI (and this is what is happening on an individual and collective level via the NMSS).
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby 1eye » Thu Apr 15, 2010 12:26 pm

I don't know about you, but I have been told that my cognitive ability had decreased to the below, but near average (you know 50% are below average?).

I spend a lot of my time typing. I have no other means of communication, as my speech and memory don't work well together, and my self-image has taken a bit of a beating. I don't do much verbally.

I have always had a problem with powerful, intelligent men giving extreme amounts of stress, some seemingly imagined, apparently without much thought or empathy, for the sake of some perverted form of 'winning', to people who are so vulnerable to it.

If Dr. Zamboni had not been calm and deliberate, the PwMS, *US*, would have gotten a heavy dose of wrist-slapping, and he knows it would not be necessary. His wife had MS, and he knows what the release of stress hormones does to many who still have it. In this sense he has 'done no harm' more than a large number of doctors, and much stress has been avoided by the diplomatic and appeasing positions he has taken. His wife has a CCSVI stent.

I have had a hard time chilling, when I have had a YouTube video sent to me that feature a mother crying, because her doctor suddenly canceled all CCSVI appointments. Have they got everything all plugged? I have to keep remembering these people, a *lot* of them, don't know what stress does to a PwMS, or even maybe how much they are causing. I wish they would get a clue. In that sense, and only that, do I despair.

Even the scientists. Even the doctors. Maybe especially the doctors.

I started watching only at the end of Zamboni, and until part-way into the IR. I had the impression Dr. Zamboni was following a script he did not write, part of the time, and he did not look happy with some of what he said. But that's just me.

Two discussions happened yesterday, and the other was an interview on Anna Maria Tremonti's The Current. It featured first, Dr. Zamboni, and next, Dr. Freedman. The webcast later used the same formula, and both had the effect intended. Let Dr. Zamboni speak first. Then have the real truth-tellers correct any mistakes, and show how much they are doing. these are techniques, but effective ones. I call it Last-Word-Ism.

Why should patients have to become "Blogger patients"? Why should patients have to become vein experts, and still not get through to their governments? Why is the last person to see the truth a doctor, who has supposedly worked on behalf of MS patients most of his career? Last-Word-Ism in the extreme?

I hope (gotta hope for *some*thing) these guys are happy with all the healing they have prevented. The Hippocratic Oath thing is getting tired, IMHO.
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Postby ndwannabe » Thu Apr 15, 2010 12:46 pm

1eye wrote:I don't know about you, but I have been told that my cognitive ability had decreased to the below, but near average (you know 50% are below average?).

I spend a lot of my time typing. I have no other means of communication, as my speech and memory don't work well together, and my self-image has taken a bit of a beating. I don't do much verbally.

I have always had a problem with powerful, intelligent men giving extreme amounts of stress, some seemingly imagined, apparently without much thought or empathy, for the sake of some perverted form of 'winning', to people who are so vulnerable to it.

If Dr. Zamboni had not been calm and deliberate, the PwMS, *US*, would have gotten a heavy dose of wrist-slapping, and he knows it would not be necessary. His wife had MS, and he knows what the release of stress hormones does to many who still have it. In this sense he has 'done no harm' more than a large number of doctors, and much stress has been avoided by the diplomatic and appeasing positions he has taken. His wife has a CCSVI stent.

I have had a hard time chilling, when I have had a YouTube video sent to me that feature a mother crying, because her doctor suddenly canceled all CCSVI appointments. Have they got everything all plugged? I have to keep remembering these people, a *lot* of them, don't know what stress does to a PwMS, or even maybe how much they are causing. I wish they would get a clue. In that sense, and only that, do I despair.

Even the scientists. Even the doctors. Maybe especially the doctors.

I started watching only at the end of Zamboni, and until part-way into the IR. I had the impression Dr. Zamboni was following a script he did not write, part of the time, and he did not look happy with some of what he said. But that's just me.

Two discussions happened yesterday, and the other was an interview on Anna Maria Tremonti's The Current. It featured first, Dr. Zamboni, and next, Dr. Freedman. The webcast later used the same formula, and both had the effect intended. Let Dr. Zamboni speak first. Then have the real truth-tellers correct any mistakes, and show how much they are doing. these are techniques, but effective ones. I call it Last-Word-Ism.

Why should patients have to become "Blogger patients"? Why should patients have to become vein experts, and still not get through to their governments? Why is the last person to see the truth a doctor, who has supposedly worked on behalf of MS patients most of his career? Last-Word-Ism in the extreme?

I hope (gotta hope for *some*thing) these guys are happy with all the healing they have prevented. The Hippocratic Oath thing is getting tired, IMHO.


For somebody who was labeled at "50% of cognitive ability", this was extremely well said. As a matter of fact, it was extremely well said period, label or no label.

I wonder how high your cognitive ability was before MS (will be AFTER you are healed)? :)
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Postby Zeureka » Thu Apr 15, 2010 12:57 pm

...

with this meant the article speaks for itself...
Last edited by Zeureka on Thu Apr 15, 2010 1:29 pm, edited 1 time in total.
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