This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.corriere.it/salute/speciali/ ... 8d1f.shtml

This is an interview with Dr. Zamboni translated from Italian. He mentions that in 2004, he first looked at the neck veins of MS patients compared to his students who were the healthy controls. What he found then was that 33% of the MS patients had clear venous anomalies, compared to less than 10% of the controls.

!!

This is tremendously different that his 2009 results. In 2009, he found that 100% of MS patients had venous anomalies that could be identified on doppler and that 0% of healthy controls did.

His 2004 findings are more in line with what we saw in other doctors' research who also find an association between MS and CCSVI. His 2004 findings would not have set him up as showing 100% specificity and sensitivity. The discovery that venous malformations are associated with MS is HUGE whether the percentage of that association is 33% or 100%.

I wonder if his doppler methodology changed between that 2004 casual data gathering on his students and MS patients and the 2009 formal study that was published? Or if there was a difference in how he selected his patients and controls?

Cece---
In 2004, Dr. Zamboni was using B mode doppler ultrasound on the neck alone and visualizing venous anomalies. Later--after 5 more years of research-- it would be the deep cerebral vein reflux, seen by transcranial doppler, that became the crux of his discovery. The five parameters which determine CCSVI are very specific, and reflect the evolution of his research. Zamboni did not find 100% had venous anomalies that could be seen on doppler (many webs and septa are missed on B mode)....he found that 100% of pwMS had CCSVI. And he claims that normals do not have CCSVI.
No one has replicated his discovery...but the problems with the TCD protocol have been noted by Fox/Cleveland Clinic and Zivadinov/BNAC.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

So isn't the way to reproduce the finding to use the gold standard, venography and IVUS, rather than wasting time trying to use an obviously inferior tool?

If you must do that (as many have), about all you can say is that Doppler can't always find 100% and that Dr. Zamboni was lucky, and his sample was too small. Basing judgements about CCSVI, and/or it's relationship to 'MS', whether the result is 33% or 0%, on Doppler alone, is more suspect than anything Dr. Zamboni has published.

Dr. Zamboni was well aware that there is a better way, once a finding of CCSVI is positive by those 5 criteria. That's a given, without need of further belaboring.

What I think is that a diagnosis of "MS" should be enough to justify venography and IVUS. The Doppler testing is merely elaboration, like my echo cardiogram elaborated on what the enzyme blood tests proved: that I needed angioplasty. I had it the next morning. My waiting stretcher was like an airplane, stacked up, waiting for clearance with all the other stretchers in that narrow hallway.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Great point, 1eye. Yes, venography is the gold standard.
The problem was --according to Dr. Zamboni--the ethics committee overseeing his research needed "proof" of a vascular condition before they would approve venography. The only way he could move ahead with an invasive test was to show CCSVI. And this meant that he needed to find a way to do this non-invasively. Marie Rhodes has said since the beginning that the doppler test would be the Achilles Heel of CCSVI diagnostics. And she was right.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Whether Marie Rhodes was right or not, about Doppler being an Achilles' heel, do you not agree that there is a suspicion that CCSVI is a medical condition suffered by many, who usually have other, demonstrable, diagnosable vascular problems, who also have family histories rife with vascular problems? I think its possible relationship to "MS" has been used as a whipping boy, an excuse, a scape-goat, to justify medical obstructionism with the most obvious and base motivations.

This problem is going to recur, with Alzheimers, ALS, who knows what other medical territory will be claimed as the property of some group of doctors, insurance companies, drug companies, fund-raisers or other economic juggernauts? Health is Big Business. Too big for governments.

My grandfather only lived to be 9 years younger than I am now. All my grandparents and both my parents had strokes. Heart failure (after several attacks) was their official cause of death. My mother had vasculitis for many years; she lived to 75. She thought that was plenty, since neither of her parents had gotten to 70. I have seen other nearly identical histories to mine, on this site alone.

I think CCSVI is probably quite common, and I would not be at all surprised to learn that CCSVI is much more prevalent than "MS". The biggest mistake might have been ever saying anything about "MS" at all. That problem is shared by the rest of the world, whether they like it or not.

Dr. Zamboni is a great doctor whose work has resulted in help to a lot of cases. I for one am very happy he has done this work, inspiring so many to look in corners they might have missed.

The continuum includes: heart, stroke, and venous insufficiencies.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

It's encouraging that Dr. Zamboni's initial results were more in line with the initial results we've seen from other researchers. At that time he was as inexperienced as they are now.
Dr. Zamboni is brilliant and I expect him to end up with a Nobel.
Doppler is not the best imaging. Multimodal seems to be the best that can be done. When I had the procedure done, I'd had an MRV, two doppler ultrasounds at two different clinics, and then the catheter venogram plus intravascular ultrasound. That felt pretty multimodal. Plethysmography would have been nice, and a follow-up MRV, and supplementary doppler ultrasound or plethysmography while on the table...but that's asking for a lot!

What seems to me a lot to ask is that insurers and/or the state accept "MS'' anymore as totally untreatable except by wizards, and pay for the "care" because the patients cannot. When is somebody going to do the actuarial work to prove people treated with CCSVI procedures are employed longer, are out of hospital or long-term medical facilities longer, live longer, etc.? When are pw"MS" going to be given treatments that don't cost more than 99.9999999% of humanity can afford? I'm tired of being nothing but a beleaguered bovine bonus. :-{{{

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

just a comment

http://www.medscape.com/viewarticle/779310