This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr Zamboni has recently advised caution for CCSVI surgical treatment outside clinical trials. Source: CTV News Copyright CTV GlobeMedia 2010 (17/10/10). This is in contradiction to his earlier suggestion that those pwMS can opt for this treatment if all other options fail. I live in such a part of the world where there would be no clinical trials for CCSVI in next ten years (for sure) and I cannot travel abroad due to financial reasons. Any comments please.

Well; where are you located?

I am stationed at Islamabad, Pakistan. Please note that I had my liberation treatment (probably 1st in the country) at one of the best hospitals of the city and done by a competent IR in July 2010. So Why I have posted this topic today?
It is just because many pwMS in Pakistan are now contacting me for a green signal so that they should also undergo subject treatment (2nd procedure of a lady done in August. Also reports of some very positive improvements).
Few things more. I am an ardent supporter of Dr Zamboni theory. I had positive effects on my MS after the procedure, for which I now realize that these positive improvements are by no way placebo effects. Further, I have never been on any DMD. I am sure, my explanation has provided some answers to the questions. If someone close wants to have more clarity, I request the individual to post personal message to me.

The reason to try to be involved in a study is for patient protection. The doctors who did early CCSVI venograms found that veins were much more complicated than they thought. As more patients are treated, we are also finding better treatment methods. Further, there is no consensus yet of how many veins to treat (internal jugulars, azygos, iliac, etc.) and/or whether to use stents.

Now that doctors from many countries are setting up a registry to collect and analyze data, the procedure will soon be safer and more effective. It seems that about 1/3 of patients get very good results, 1/3 get some benefit and the rest see no change.

In some doctors' experience, there is a high percentage of restenosis which requires further treatment. And in some cases, the cost for treatment -- by folks who speak a different language than the patient -- has increased significantly, while the issue of follow up care has been ignored.

I was treated as part of a "study" at Georgetown hospital in DC. Unfortunately, the study was stopped as they were not seeing much improvement in patients. I saw no benefit from my venogram. The only change was in the smaller size of my bank account, and I must now seek treatment elsewhere.

It seems that for now, even in a study, treatment is still a crap shoot. I believe that in a year, treatment will be much more standardized and successful.

In the meantime, those whose health requires immediate action might find the relief they need. The odds just aren't as good yet as they will be.