RESULTS and techniques of different doctors (CCSVI)

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RESULTS and techniques of different doctors (CCSVI)

Postby Liberation » Sun Apr 03, 2011 9:07 am

Do we have information on the techniques different IRs are using and their results? Collecting this information might help us easily find info on doctors, clinics whom we intend to choose. e.g. what size of ballons are used, who uses ivus, who tears up the annulus, who dilates all the valves, who dilates only those valves that he deems abnormal, what are the success rates of certain IRs, what is their restenosis rates, what is the occurance of thrombosis, clotting, scarring, occlusion, etc.

Here's one speech from dr Sinan on his results:



http://www.youtube.com/watch?v=cChReoCFEN0
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Postby Cece » Sun Apr 03, 2011 10:15 am

This is one of my absolutely favorite topics of converstation here at tims. I am in. :) We have info on many of the doctors' techniques. Some of the doctors are adjusting their techniques as they learn. It is difficult however to get a sense of the outcomes and results.
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Re: RESULTS and techniques of different doctors (CCSVI)

Postby pklittle » Sun Apr 03, 2011 11:41 am

Liberation wrote:Do we have information on the techniques different IRs are using and their results? Collecting this information might help us easily find info on doctors, clinics whom we intend to choose. e.g. what size of ballons are used, who uses ivus, who tears up the annulus, who dilates all the valves, who dilates only those valves that he deems abnormal, what are the success rates of certain IRs, what is their restenosis rates, what is the occurance of thrombosis, clotting, scarring, occlusion, etc.

Here's one speech from dr Sinan on his results:



http://www.youtube.com/watch?v=cChReoCFEN0


The video is from Sept 2010. I would be much more interested in hearing what he has to say today.

I had really, really hoped by now that there would be a coordinated effort by all doctors who have been doing the procedure so that a reliable, thorough database could be building, complete with pre and post followup information.
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Re: RESULTS and techniques of different doctors (CCSVI)

Postby Liberation » Sun Apr 03, 2011 12:10 pm

pklittle wrote:
Liberation wrote:Do we have information on the techniques different IRs are using and their results? Collecting this information might help us easily find info on doctors, clinics whom we intend to choose. e.g. what size of ballons are used, who uses ivus, who tears up the annulus, who dilates all the valves, who dilates only those valves that he deems abnormal, what are the success rates of certain IRs, what is their restenosis rates, what is the occurance of thrombosis, clotting, scarring, occlusion, etc.

Here's one speech from dr Sinan on his results:



http://www.youtube.com/watch?v=cChReoCFEN0


The video is from Sept 2010. I would be much more interested in hearing what he has to say today.

I had really, really hoped by now that there would be a coordinated effort by all doctors who have been doing the procedure so that a reliable, thorough database could be building, complete with pre and post followup information.


I just put it there as a starter. I talked to him and he told me that he changed those techniques which are on the net. I think if we all share our experiences here we might gain something from that. I must say that he is among those few doctors whom you can reach by phone and talk to him. Where have you been treated? I noticed that there has been some discontent about large balloons and Egypt, but I have only heard of Winni's problem who was treated there. It would be good if we could see where those other problems occured. I only know three guys who have been treated in Egypt, but all of them showed improvements.
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Re: RESULTS and techniques of different doctors (CCSVI)

Postby pklittle » Sun Apr 03, 2011 4:50 pm


I just put it there as a starter. I talked to him and he told me that he changed those techniques which are on the net. I think if we all share our experiences here we might gain something from that. I must say that he is among those few doctors whom you can reach by phone and talk to him. Where have you been treated? I noticed that there has been some discontent about large balloons and Egypt, but I have only heard of Winni's problem who was treated there. It would be good if we could see where those other problems occured. I only know three guys who have been treated in Egypt, but all of them showed improvements.


I was one of the early ones in Albany at Community Care. To find a whole lot more about Egypt and Dr. Sinan go over to facebook and read Kathleen Lynch's page, her notes, etc.
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Postby Nunzio » Tue Apr 05, 2011 5:10 am

I have to agree with all of you. In this internet era I was hoping doctors would share their technique with youtube videos of the procedures they perform so other doctors involved in CCSVI would advance their learning curve more quickly and the best technique would emerge.
I applaud Dr. Sclafani attempt with his blog about doctors only sharing their experience, which unfortunately was not met with much enthusiasm.
I had the same question about the use of larger balloons and I asked that to dr. Sinan. This is his answer
We have experience of more than 400 patients. We will do what ever is necessary
according to the findings on Angiogram. Cutting, double balloon, balloons with
wire. large balloons up to 23 mm

So it looks to me he is still using the balloons to break the annulus around the valve, not just stretched it.
Interestingly Dr. Zamboni reported open sky surgery on 10 patients who did not have improvements from angioplasty, with apparently good results.
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Postby Liberation » Tue Apr 05, 2011 6:17 am

Nunzio wrote:
We have experience of more than 400 patients. We will do what ever is necessary
according to the findings on Angiogram. Cutting, double balloon, balloons with
wire. large balloons up to 23 mm

So it looks to me he is still using the balloons to break the annulus around the valve, not just stretched it.


If my recollection is right, others like dr Sclafani breaks the annulus as well, isn't it? I was asking a well respected vascular surgeon who got the international prize of the American Association of vascular surgeons in 2010 and he was working with dr Zamboni in the past about this. He told me that he does not support the "breaking'" of the "annulus" for many reasons, one of them was that remodelling of the vein can happen. He is the head of the department which carries out CCSVI operations. I have a great respect for him, just like I do for dr Sclafani. For restenosis, and he is sure of it,after one year of follow up it would be pretty high. Restenosis, after one year of follow up is at least 50%. According to him, the mechanism of restenosis is due to the vein wall structure not to differences in technique.
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Postby Nunzio » Tue Apr 05, 2011 7:20 am

Liberation wrote:If my recollection is right, others like dr Sclafani breaks the annulus as well, isn't it? I was asking a well respected vascular surgeon who got the international prize of the American Association of vascular surgeons in 2010 and he was working with dr Zamboni in the past about this. He told me that he does not support the "breaking'" of the "annulus" for many reasons, one of them was that remodelling of the vein can happen. He is the head of the department which carries out CCSVI operations. I have a great respect for him, just like I do for dr Sclafani. For restenosis, and he is sure of it,after one year of follow up it would be pretty high. Restenosis, after one year of follow up is at least 50%. According to him, the mechanism of restenosis is due to the vein wall structure not to differences in technique.

I think Dr. Sclafani has a more gentle approach. He checks the diameter of the vein above the narrowing and dilate up to that diameter not to damage the wall of the vein. This might not break the annulus. He can answer the question better than I can. In my case I had my symptoms come back after only a week time and I had 3 procedures done at one month interval.
It might be that what we really need is a stent designed for the Jugular vein to prevent renarrowing.
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Postby Cece » Tue Apr 05, 2011 7:25 am

What does remodelling of the vein mean, after an annulus has been broken? Is there any precedent in the treatment other venous diseases of these annuluses being deliberately broken?

Some of the technique differences that come to mind:

Dr. Arata's group will use the very large balloons. They break the annulus too, perhaps not in all patients? Dr. Arata's group may prescribe only aspirin or nothing at all, post-procedure.

Dr. Sclafani's techniques we know the most about, because of his openness here. IVUS is the stand-out of his techniques, used now to measure the vein to choose the most precisely sized balloon, and also used to visualize the veins from the inside to assist in seeing as much as can be seen. He also images the iliac and the ascending lumbars.

Dr. Siskin's group will use stents in specific circumstances. They also do a post-procedure ultrasound the next day. They prescribe Plavix, an antiplatelet, with a loading dose the day of the procedure.

Dr. Cumming uses balloons large enough to get the job done but not too large so as to spare the vein injury. He also has been using ivus.

Dr. McGuckin explores other veins, such as the IVC and SVC and has ballooned the renal vein in at least two reports from patients.

Dr. Sperling, I don't know much about. Dr. Arslan. Dr. Ponec. Dr. Sullivan in Atlanta.

Dr. F. in Chicago is more conservative, which I think means smaller balloons and shorter durations of ballooning.

Dr. Dake has used stents and prescribed Coumadin after the procedure.

Dr. Sinan pioneered the very large balloons, the compliant (?) or noncompliant (?) soft ballooning of the azygos to look for indications on the balloon of stenoses, and the use of valvulotomes or valve-cutter last spring. He prescribes aspirin, plavix, and lovenox/clexane, although the latter is for a relatively short duration.

Different types of stenoses too may require different techniques. The different types of stenoses that come to mind are:

bad valves (fused leaflets)
bad valves (annular stenoses)
abnormally small vein (hypoplasia)
membranes in the azygous
partial duplication of jugulars
dural sinus stenosis

That last one has been left alone by most doctors but there were reports that Dr. Dake has treated one and Dr. Arata's group has treated one, iirc.

Nunzio, I am sorry to hear that your symptoms came back.
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Postby Liberation » Tue Apr 05, 2011 1:04 pm

Nunzio wrote: I think Dr. Sclafani has a more gentle approach. He checks the diameter of the vein above the narrowing and dilate up to that diameter not to damage the wall of the vein. This might not break the annulus. He can answer the question better than I can. In my case I had my symptoms come back after only a week time and I had 3 procedures done at one month interval.
It might be that what we really need is a stent designed for the Jugular vein to prevent renarrowing.


Nunzio, I am sorry to hear that your symptoms came back. Did you get restenoses again? Dr Milic the vascular surgeon whom I reffered to told me that he beleives that even 4 dilations in a year migth be needed to avoid restenoses for a time. He is against stents for the time being.
I do not know how annulus can be dilated without breaking it as it is supposed to be of a hard texture.
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Postby Liberation » Tue Apr 05, 2011 1:08 pm

Hi Cece,
you did an excellent job :)
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Postby Liberation » Tue Apr 05, 2011 1:16 pm

In Serbia, they use small ballons and they are aginst stents. I just got the info that they dilate 4 times a year in order to avoid the stenoses. They gave me aspirin for one month after the operation.

Dr Sinan goes into the veins by balloons and tries to find obstacles this way. When he sees narrow annulus he breaks it. It seems to me he dilates the other valves. He uses large ballons but if I understand correctly he starts it with a smaller one and goes up from there. I guess this way he can infer it from the balloon pressure how much he can go up. His anticoagulant regimen is quite strong, injection, Plavex and aspirin.
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Postby Nunzio » Tue Apr 05, 2011 1:46 pm

Hi Cece and Liberation, thank you for your concerns.
Since I have a superfast renarrowing, now for the third time confirmed by Venography on my previous 2 times.
This is the way it looked on my second procedure a month after a 14 mm dilation.
Image
It was dilated with a 14 mm balloon again
Image
and then with a 16 mm balloon.
Image
A month later it looked like this.
Image
It was then dilated with a 16 mm balloon.
Image
Now I have 4 possibility:
1. Larger balloon
2. Stent
3. Open Sky procedure
4. Do nothing
Stay tuned........
Last edited by Nunzio on Tue Apr 05, 2011 2:11 pm, edited 1 time in total.
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Postby Liberation » Tue Apr 05, 2011 2:10 pm

Nunzio wrote:Hi Cece and Liberation, thank you for your concerns.
Since I have a superfast renarrowing, now for the third time confirmed by Venography on my previous 2 times.
This is the way it lokked on my second procedure a month after a 14 mm dilation.
ImageIt was dilated with a 14 mm balloon again
Image


Where did you have the operation? 14 mm sounds a smaller balloon, doesn't it? Mine was done with a smaller balloon and I got restenoses also in a week or two. My doctor told me that they just started a new group of patients whose veins will be dilated 4 times a year. They think it is a safer way than using extra large balloons. It would be really good if IRs would exchange notes with each other and they would have reliable data on their patients. We would save lot of time, damages and unneccessary procedures.
Did they say anything about why restenoses happens so quickly? I guess it is a pure elastic recoil. Did they dilate the valves or break the annulus?
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Postby Cece » Tue Apr 05, 2011 2:50 pm

It would be really good if IRs would exchange notes with each other and they would have reliable data on their patients.

The American Access Care nationwide registry is along these lines, with Dr. Sclafani's data, Dr. Sullivan's, Dr. Ponec's, Dr. Makris, and the other AAC doctors' data all pooled together.

Now I have 4 possibility:
1. Larger balloon
2. Stent
3. Open Sky procedure
4. Do nothing
Stay tuned........

Did Dr. Sclafani have a recommendation? Those are tough choices. It is a valve? You can still see waisting on the balloon, even after the first 16 mm ballooning. Valvulotome would be on the list of possibilities if it were done in the US.
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