This Is MS Multiple Sclerosis Community: Knowledge & Support

As a lay person admittedly, I have been studying CCSVI and have come to understand that a number of improvements have been made to CCSVI treatment that apparently may significantly reduce the risk of restenosis and provide better treatment. What I understand is these are as follows:

1) Providing a slight tear to the annular ring (O-ring) as opposed to stretching it as was done before.

2) All fused valves must be popped or torn.

3) The IR must check all of the following areas: check all the veins (Iliac, both renals, sigmoid sinus, Azygos, AND hemi-azygos, jugulars, vena cava???

4) More standardization is needed to determine what testing is actually helpful prior to the treatment.

I am personally trying to choose a doctor and I want to make sure I choose one who is open to constant learning and improving on the procedure. Some people believe in following Zamboni to a letter, but I think even Zamboni would agree that improvements could be made. The IR docs are still learning.

I do not know how to choose a doctor whom I can ensure is really on top of all this.

I would like to ensure the best possible outcome, lowest risk of restenosis, lowest risk of complications, etc--as I'm sure others would as well.

I am new at this--trying to figure it out--and would appreciate feedback.

I agree with #4 but not 1, 2, or 3. I'll be back later....
Welcome to the site!

someone who is familiar with these improvements I mentioned in the initial post? I want to find one of the top IRs in the U.S. I don't know who that is?

Don’t forget about the right post-op treatment too. I would look at what Bill Code said about the effects of vitamin D and fish oil (both before and after treatment) on restenosis and healing. Magnesium too has been shown to help prevent restenosis.

You are jumping the gun there. Your first 3 items is your opinion and that of some IRs, it has not been established what the best approach is, but you could start out asking e.g. the IR closest to you if he/she also finds your 3 "requirements" the best approach and go from there.

Nobody here knows who the best IR is, we are not doctors and besides this is the internet and everybody will post their "expert" opinion. People also tend to advocate or even gurufy the IR that gave them improvements, but that does not mean anything regarding that IRs qualifications just as an IR who did not give you any improvements could be the best of them all.

there are many great IR's across the country.

as for ccsvi, you need to find someone who is willing or has made a commitment to learning everything they can about ms and ccsvi. so, avoid someone who is just doing 1 or 2 a month and who has not been to any of the major meetings on ccsvi. as dr. dake once told me, "this procedure is not like anything else you have done." the technical skills to perform the procedure are usually not that high. its the decision making behind those skills that is very important.

Dr Haskal said it was more art than science and from my treatments I agree 100% Maybe a bit like putting paints and brushes in the hands of art experts - you are not always going to end up with the Mona Lisa.

Jamit,
I was not trying to sound like a know it all. Please understand I am the first person to admit I know practically nothing about CCSVI. I am just a person who has battled MS for 5 years and it has taken more than I can say from the quality of my life.

I was excited when I heard Dr. Hewitt's symposium that these changes seem to be reducing restenosis quite a lot -- but only to find out today from Dr. Cumming and Dr. Sclafani that they aren't even using the methods I mentioned and the apparently IVUS is the gold standard.

So I just wanted to say what I was stating was just my paraphasing of Dr. Hewitt's symposium.

I read of people on their fifth treatment already. If there is a way to avoid the continual restenosis, then I'd like to learn what it is.

These are all just my opinions as a lay person.

Dr. Cumming,
Does the "decision making" as an IR that you mentioned come from the IVUS or from experience or intelligence, or other factors, or a combo of these things?

As I mentioned in other posts, I don't want to end up getting 5 treatments over the next year, like others I have read about.

What is the best way to know that I am doing what I can to reduce the chance of restenosis and get the best treatment available--Is it the doctor I choose or the diet and exercise and lifestyle I do after the procedure--Or is it completly unpredictable and uncontrollable?

Thanks.

This is great advice.

Its a combination and balance of all those things (plus a few others). There is no question about a learning curve for new operators.

The last year has seen several different approaches. The latest trend has been towards big balloons with the goal of "popping" the annulus. Some have claimed increased patency doing this (however, they do no follow up imaging so they do not know what is happening).

I have seen a few severe restenosis and occlusions post aggressive venoplasty.

IVUS has many benefits. It allows you to find stenosis not apparent on venography and to determine what is causing the stenosis (ie valve leaflets, annulus). And I think it allows better balloon selection. I think we can reduce restenosis by minimizing the trauma to the vein wall. No proof yet.

I have no concrete evidence if this approach is any better or not. Again, we must remember, that since there is still no conclusive evidence the procedure works, we want to make sure we minimize any downside of the procedure. In my experience, oversized balloons can actually make things worse.

It is interesting that the selling point for large balloons was that restenoses rate is lower with it. Did full collapse of veins and full occlusions happen more with large balloons?

I thought we can reduce the incidences of thromboses and hyperplasia with less trauma. If I use small balloon, like Dr Z did originally, I would assume the restenoses rate to be higher.

see the images in this thread

http://www.thisisms.com/ftopic-15223-da ... an-75.html

case of the 28 yo male

in short, we do not know the best way to do the procedure. i would rather have a higher restenosis rate rather than cause veins to completely collapse to nothing post plasty.

i have said it again and again, big is not necessarily better.

IVUS allows us to size the balloon to the surrounding normal vein. this way we can balloon the valves as large as possible with minimal damage to the underlying vein wall.

I was so gung ho for the oversized balloons previously.

You are right about all of this. I find it ironic that, when considering the downside, in order to consider the collapse and loss of a jugular a downside, you also have to consider the jugulars of importance. With my left jugular (100% occluded before treatment), there would have been no difference in flow between that and a lost jugular.

Cece, I went back through, and during your procedure there was a use of oversized balloons (2mm if I did the math properly).

I'm not sure what "oversized" truly means to the resident Dr.s at TIMS to tell you the truth. Would be interested in hearing ...

Maybe we need a "Questions for Dr. Cumming thread" because he seems to be everywhere but is hard to pin down.