RESULTS and techniques of different doctors (CCSVI)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Nunzio » Tue Apr 05, 2011 2:57 pm

Liberation wrote: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?

My last procedure was done by Dr. Sclafani. 14 mm. balloon was used for my first procedure and 16 mm for the last two. Having the procedure 4 times/year wouldn't help me; I would need to repeat it once per week.
Nobody knows why the quick restenosis. It might be elastic recoil, fusion of the valve leaflets or extrinsic compression from a muscle, tendon or blood vessel or a combination of the above.
I think a 16 mm balloon would dilate the valve and stretch the annulus but I do not think it would break it.
Time will tell
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Postby civickiller » Tue Apr 05, 2011 4:37 pm

Nunzio, did you ever get checked for TOS? Your blockages, if I'm seeing correctly, seems to be right at where bones are.
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Postby drsclafani » Tue Apr 05, 2011 8:26 pm

Liberation wrote:
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.


Nunzio and liberation:

i am backing off trying to break the annulus. Now that i understand more fully the nature of the stenosis, i will try avoid it whenever possible. However if the vein is 3-4 millimeters in diameter and i think that the annulus is just too small to allow much blood through it, then i will push a bit harder since there is not much flow as things are . OnPerhaps in the future isurgical resection will be a better alternative. although we would need mo re data to suggest it
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Postby Liberation » Wed Apr 06, 2011 5:23 am

drsclafani wrote: Nunzio and liberation:

i am backing off trying to break the annulus. Now that i understand more fully the nature of the stenosis, i will try avoid it whenever possible. However if the vein is 3-4 millimeters in diameter and i think that the annulus is just too small to allow much blood through it, then i will push a bit harder since there is not much flow as things are . OnPerhaps in the future isurgical resection will be a better alternative. although we would need mo re data to suggest it
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Postby Liberation » Wed Apr 06, 2011 5:24 am

drsclafani wrote: Nunzio and liberation:

i am backing off trying to break the annulus. Now that i understand more fully the nature of the stenosis, i will try avoid it whenever possible. However if the vein is 3-4 millimeters in diameter and i think that the annulus is just too small to allow much blood through it, then i will push a bit harder since there is not much flow as things are . OnPerhaps in the future isurgical resection will be a better alternative. although we would need mo re data to suggest it


Thank you. It makes sense. What would be the "nature of the stenoses"?
How do you see the restenoses rate with your old approach and the new one with ivus?

How realistic is the restenoses rate of 2% that dr Sinan reports? It seems to me that in the first five months it could be true based on what I hear from patients. Even Winni's problem occured only 5 months after the operation. What are the long term risk of dr Sinan or dr Arata"s techniques?

I do not know what my doctor meant by "remodelling of the vein can happen" when annulus is broken. What could be the risk with this? Is it possible to stretch the annulus without breaking it?
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Postby Nunzio » Wed Apr 06, 2011 2:27 pm

civickiller wrote:Nunzio, did you ever get checked for TOS? Your blockages, if I'm seeing correctly, seems to be right at where bones are.

Yes, I did and TOS was not found; I still could have CTOS or CTNVS as it is called now. In that case a stent or an open sky procedure should help.
http://www.thisisms.com/ftopicp-97920-.html#97920
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Postby Liberation » Wed Apr 06, 2011 2:28 pm

Did any doctor reported restenoses rates or only dr Sinan did? It would be also interesting to know what are the occurances of occlusion caused by clotting and intimal hyperplasia, scarring?

As for partial thromboses, it seems to me that it can be treated more easily, at least this is what I heard from dr Simka and dr Sinan from their experiences.
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Postby lucky125 » Wed Apr 06, 2011 6:18 pm

I don't think that we can realistically expect doctors to fully collaborate at this point in time. There are just too many different rationales, and techniques being used.

I saw McGuckin after he treated my friend on Monday. He treated her IJVs, azygos, l. renal, and iliac veins. I know other doctors who would absolutely consider his approach too aggressive at this point, because there are no studies about treating the iliac and renals. Zamboni didn't touch them.

Until each doctor has a robust number of treatments under his belt, and is keeping good data, we will not know who is having the best long term results.

We may not know the intimate details of what they are sharing with each other, and that's o.k. As long as they are talking amongst themselves, even if they are not necessarily agreeing, we are all benefiting.

We are still in the wild, wild West of CCSVI treatment. A very knowledgeable person in this field told me that we won't have a "best practice" model that all doctors will follow for another 5 years.

I didn't wait, and I wouldn't expect anyone else to wait 5 years. But we are very much in a "caveat emptor" time in CCSVI treatment.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Wed Apr 06, 2011 7:59 pm

That's the third report of Dr. McGuckin ballooning renal veins. Either the rest of the IRs are undertreating this vein or he is overtreating (and I don't know which it is right.) How big of a vein is it? Is there precedence in the literature for ballooning the renal vein as there is for the iliac and May Thurner?

I agree with what you've said in regards to wild wild west, no standardization, caveat emptor.
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Postby civickiller » Wed Apr 06, 2011 10:47 pm

Nunzio wrote:
civickiller wrote:Nunzio, did you ever get checked for TOS? Your blockages, if I'm seeing correctly, seems to be right at where bones are.

Yes, I did and TOS was not found; I still could have CTOS or CTNVS as it is called now. In that case a stent or an open sky procedure should help.
http://www.thisisms.com/ftopicp-97920-.html#97920


ive read that upper cervical care can help
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Postby Liberation » Thu Apr 07, 2011 7:00 am

Do we have any data on the potential negative impact of the operation on the course of MS?

When I first talked to my neurologist about CCSVI more than a year ago he told me that some of them got curious and had some hopes about it. They even sent patients for MRV without letting know the public about it. However, they have some legitimate concerns about safty issues that should be handled. Some of the neurologists admit that they are not even sure if this is an autoimmune disease or not; however, they know that MS can have a very different course in different patients and even though we categorize it into three or four types; in reality it varies in each person. It can be even very mild not affecting someones's life significantly but also very devastating. This is why they are afraid of recommending it to anyone as they do not know what could be the impact of messing around in the veins very close to our brain.

So it would be good to hear about safty reports, just like this is the first step in clinical trials of a drug to see if there is any major side effects of the treatment. We also hear about patients whose condition got worse after operation or when they got restenosed. It would be good to know what is happening here. We all know that even high temperature, stress, infection can make things worse for us. Any operation can cause a stress for our body. If the hypothesis is that excess iron weakens the BBB and that weakened BBB lets iron and T-cells into the brain wreaking havoc, can the balloon damage the BBB, too? Does tha operation cause a stress for the our body?
So, any data on these issues?
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Postby lucky125 » Thu Apr 07, 2011 7:48 am

Cece wrote:That's the third report of Dr. McGuckin ballooning renal veins. Either the rest of the IRs are undertreating this vein or he is overtreating (and I don't know which it is right.) How big of a vein is it? Is there precedence in the literature for ballooning the renal vein as there is for the iliac and May Thurner?

I agree with what you've said in regards to wild wild west, no standardization, caveat emptor.


Dr. McGuckin justifies treating the left renal vein because it drains the hemiazygos. There is no studies about treating it that I am aware of.

Just because one doctor is doing it doesn't mean that he is more right than a doctor who does not.

Cece, I guess until you and I go to medical school and become IRs ourselves, we'll never know more than they do! I'm busy this week, so I'll have to put off my applications until at least next week! ;o) Sigh... So many goals, so little time and money!

Maybe I can at least learn to ride a horse and twirl a lasso so I can hang out with them in the Wild West!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Thu Apr 07, 2011 8:32 am

lucky125 wrote:Cece, I guess until you and I go to medical school and become IRs ourselves, we'll never know more than they do!

We shall have to set our sights lower and aim for knowing more than our neurologists. :D :wink:

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Postby frodo » Thu Apr 07, 2011 9:05 am

just for the record maybe we can mention here the operation of Rici, as a possible technique for special cases.

I remember that there was a thread before about "different problems in veins", but I cannot find it. That could be a better place for this information, but maybe this is a good place too.

As far as I have read, the problem for Rici was a abnormally wide IJV with problems for draining. The solution was an open neck surgery in which the vein was sewed and then the extra portion was cut.

There was no need to cut the blood flow during the procedure and the vein was never open.
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Postby Liberation » Thu Apr 07, 2011 11:37 am

frodo wrote:just for the record maybe we can mention here the operation of Rici, as a possible technique for special cases.

I remember that there was a thread before about "different problems in veins", but I cannot find it. That could be a better place for this information, but maybe this is a good place too.

As far as I have read, the problem for Rici was a abnormally wide IJV with problems for draining. The solution was an open neck surgery in which the vein was sewed and then the extra portion was cut.

There was no need to cut the blood flow during the procedure and the vein was never open.


Thanks, frodo. I think it is good to hear both the pros and the cons about certain techniques and CCSVI operation in itself. Where did Rici's operation take place?
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