" The Italian doctor behind a controversial new theory of multiple sclerosis said on Monday he welcomes more rigorous scientific investigation of his ideas, but suggested there is no reason MS patients should not immediately undergo the testing and treatment he pioneered.



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(From Topix Neurology)

I agree with the little trouble maker Newsbot.

The articles cited was written on 02/09/10. Since then, Dr. Zamboni has stated on numerous occasions that he doesn't believe patients should be treated outside of clinical trials.

Given all that we have learned in the last 12 months regarding the rather high rate of restenosis after balloon venoplasty and complications after the use of stents, my advice (as I've written about on my blog) is that all but the most desperate patient wait for 6-12 months to allow the knowledge base of the doctors doing the procedure to catch up with patient expectations.

Currently, there is little agreement amongst the interventional radiologists doing the procedure as to what size balloons to use, whether or not to use stents, and even what constitutes a treatable stenosis. Additionally, the learning curve for doctors doing this procedure has been acknowledged to be steep, so you certainly want the treating physician to have at least several dozen procedures under his belt to have the best shot at long-term success.

If a patient can find treatment close to home, can get it covered by insurance, and avoids stents, then that might tilt the equation in favor of getting the treatment sooner rather than later. Patients considering traveling very long distances and paying tens of thousands of dollars for this procedure would best be advised to wait for the science to catch up to patient hopes, as we should be learning considerably more about treatment modalities and effectiveness in the coming few months.

I have every confidence that CCSVI will prove to be a major part in the MS puzzle. I chose to undergo an attempted procedure in March, because my condition is declining at an alarming rate, and I very well could wind up bedridden within the next 12 months. If my symptoms were milder, and my disease course not so aggressive, I definitely would have waited on getting the procedure.

Of course, each patient must choose for themselves the course of action that feels right to them…

Hey Marc- money aside, would you be better or worse right now without procedure? Dissolvable stents I was told wil be out in 3 yrs but that's 3 yrs.

Exactly! I too believe in CCSVI, but not for myself yet. I'm newly diagnosed on the whole, and experience mild symptoms, so I have decided to wait on local clinical trials, or for treatment when available here.

Thank you for the post Marc, and for putting it into perspective. I wish you all the best with your treatment and the future.

I call my procedure a "successful failure", in that it did find an area of stenosis, but was unable to treat it.

As is usual for my atypical self, the problem they found is fairly unusual. Rather than my stenosis being caused by a collapse of the vein walls, or by a malfunctioning valve or anomalous membrane inside the vein, as is the case with the vast majority of people, it was found that the blockage of my right internal jugular vein is caused by a muscle bundle pinching it from outside the vein.

Therefore, when ballooning was attempted, it had no effect, and I've been told that if a stent was put in it would fracture within three years because of the pressure that would be put on it by the muscle. It looks like my only course of action may be to have traditional surgery to excise the muscle from my neck, but images of my venogram were looked at by Dr. Zamboni himself, and his impression was that the disruption in blood flow caused by the muscle bundle was not significant enough to warrant such major surgery.

Easy for him to say, he's not the one watching himself getting paralyzed.

I'll probably undergo another venogram early next year because my IR had trouble accessing and imaging my azygos vein the first time around. Since then, much has been learned. As I said in my previous post, the techniques and methodology being used during the procedure are being refined by the day, thus the recommendation that waiting a little while would be in most patients' best interest.

Prayers for you (((((Marc))))).

Dr. Zamboni?

http://www.zamboni.com/