This Is MS Multiple Sclerosis Community: Knowledge & Support

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

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

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.

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?

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".

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.

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.

.

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?

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 />

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)?

...

with this meant the article speaks for itself...