This Is MS Multiple Sclerosis Community: Knowledge & Support

"while in the 2 years following surgery 73% of the patients had no more attacks" - Bologna, 8 September 2009.

I'm hearing stories of treatment, out the door, see you never, only for patients to re-block a few months down the line.

Dr Zamboni had the earliest lot of patients. Im assuming their cases were closely monitored. Are they still involved in after care programs?

73% - What is the current position? Are the initial patients still being monitored?

I've been hearing so many mixed stories.

CCSVI seems to be split into 2 different treatments, one with baloons, one without.

Some offering aftercare, some not. From what I hear people are taking canelations for 2nd treatments.

It's not quite clear to me if anyone is given the same considerations as Zambonis initial patients. Are these individuals still being monitored?

Some people have contacted me about their disappointment on aftercare/treatment. I can understand their reasons for shying away from the limelight.

I dont want this to be a pro/negative CCSVI talk, im just asking a few questions that im unclear of myself. People are asking questions but being piggybacked by the evangelist/skeptic brigade.

I'm concerned afout the safety issue because like it or not there have been negative reports after the treatment.

CCSVI is just a label for a condition, different approaches will obviously produce different results.

What im really asking is why the hell is it so difficult to find simple answers? Why is it a necessity to closely guard ongoing results? A lot of things just don't add up.

The UK appear to have a 10 year transition period planned. This can be verified by looking at the past record of the same private group involved, they seem to follow the same marketing ploy over and over, right down to the march to no.10 with the petition, the calls for clinical trials and the blind selling.

Zambonis results seem impressive and certainly more impressive than any drug treatments. Why would doctors veer from the initial treatments so soon into CCSVI?

Are clinical trials being planned because of intentional confusion?

Very little seems to be coincidental as this has all been done on different platforms?

Please keep my opinions out of it but can anyone shed some light on the above points?

I think this would be a great idea Veebee! There should be one hundred people out there with some very important information to share. I guess they have reached the three year mark?

I'm for it - Good, very good points

This is just one of your points, but you made so many!

On this one, I can offer that Dr. Sclafani initially followed Dr. Zamboni's methods to a T and expressed surprise that his fellow investigators did not. But now we've heard that Dr. Zamboni used the 10 mm balloons as the maximum size only because he did not know there were bigger balloons. CCSVI malformations are unlike most things these IRs have ever treated, they are very "solid" or resistant, not sure of the word for what I mean. It is taking some innovation to try and treat them. Dr. Zamboni had solid results but he also was able to re-balloon his patients who restenosed. One of the difficulties with treatment of patients in the real world has been that people are traveling at great cost for a one-time treatment and may not be able to afford a second one. With this taken into consideration, it is a kindness on the researchers' parts to attempt to do the most thorough job possible to keep the risk of restenosis low.

Cece you are an encyclopedia of knowledge but can we for once not talk about people who restenosed, balloon size, etc. and just hear how his original patients are doing? All these other variables just confuse people.

There were some posts from some of his original patients, here and there, someone linked to it but it was a long time ago.

I don't mean to confuse anyone, I was taking that question seriously! Why did the investigators veer off from Zamboni's original methods? Some of the reasons were good ones, in my opinion.

I have wondered that from the beginning. If Zamboni had such wonderful results , why deviate from his original protocol? I know you were not trying to confuse anyone. Anyone have access to Zamboni??

Should this question be taken seriously too?

Dr. Sclafani has had access to "Paolo" and "Robbi" (so familiar! it is hard to type). From something he said back in June or May it seemed as if Dr. Zamboni considers the battle to be fought and won in the journals, among scientists, and the patient advocacy movement is not his focus, nor should we be.

Gici is among Dr. Zamboni's original patients, a search on his name might bring up some anecdotal reports, but for the most recent updates we will have to wait until Dr. Zamboni publishes on it.

We've been led astray by rumors of what results will be (I remember when everyone was sure the Buffalo results would be 95%) so there is something to be said for sticking to what's peer reviewed and published instead of rumored.

That wasn't too encyclopediac, was it?

I do not think we were led astray by rumors Cece. Remember Zamboni stated that all the people he treated(100%) had CCSVI and all of them benefited, whether through clinical improvements or no progression, from his procedure. Also remember it was said these people were "liberated". These numbers are what "fired" people up and sent people with MS into a frenzy. Why would we not expect the Buffalo study to show the same results? I agree with you and Zamboni that peer reviewed and published studies are important in confirming Zamboni's hypothesis but unfortunately in the past when a peer has been critical of his work they are instantly said to have an ulterior motive.