clotted off jugulars

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

Postby Liberation » Sun Apr 03, 2011 1:09 am

Cece wrote: With CCSVI, it typically takes an obstruction in two separate veins, not just one vein. (I know of one patient here who is an exception to this, with just one occlusion; are there more?) So even with a complete ligation of one vein, the flow will go to the other and things should be ok (although I would love to see long-term follow-up on such patients.)

I can relate from my own case, with one jugular at 100% occluded, that was similar to a ligated jugular. Had my other vein been wide open, instead of 80% occluded, maybe I would not have developed MS?


In my case they found a stenoes only in my RIJV and they dilated it. However, it started to collapse a few weeks afetr the operation. Now, it went back to the state where it was originally. I wanted to find out if there ican bee seen any abnormailities in the other two veins, but so far no anwser from dr Sclafani. Only dr Sinan responded to me; but -i am not sure if he based his anwser on the images or this is a general thing what he would do. So now, I am pretty stuck with this. I also noticed deterioration in my condition; however, it is hard to say with ppms that it was more or not than usual.

WinniPegGirl, I agree with what others have said, especially Dr. Cumming, that you made your best decision with what was known. For other patients those big balloons have worked, haven't they? It is not across the board collapse of veins. So it could have worked for you too but didn't. I like too what he said about letting your veins heal and that maybe a solution can be found


Please correct me if I am wrong, but my understanding was that sooner or later everyone's dilated veins will collapse (elastic recoil), the problem is when scarring builds up on the vein walls and it adds up to the elastic recoil and makse stenoses worse, even a full occlusion as it happened with Winni. Is that right? Could the vein collapse due to an elastic recoil without scarring to a narrower position than it was originally; so the stenoses would be greater? It is interesting that my vascular surgeon told me that with their technique (using a small balloon) they expect that angioplasty should be repeated couple times as they expected restenosis. - By the way, as far as I remember originally, dr Zamboni used balloons smaller than 10mm. He also reported that circa 50% of patients get restenoses. Has he changed his technique since? - To me elastic recoil seemed as a natural thing that everyone expected beforehand. If that is true, then we should really differenciate between elatic recoil and scarring when we talk about restenoses.
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Postby Liberation » Sun Apr 03, 2011 1:18 am

WinnipegGirl_83 wrote:Liberation,

I knew something had gone wrong after my symptoms started creeping back. Once I had my second venogram I knew for sure.

I am not completely certain of the issues that led to their re-stenosis. I know they were angio'd again, some in Egypt and some went to the U.S, another had a stent put in their azygous, I don't know the specifics.


Hi Winni,
If they had an elsatic recoil after a few monts, that would be very normal. Of course, it would worsen dr Sinan's statistics, but dr Zamboni said that circa 50% of the patients get restenoses. I think the problem if scarring occurs and that can add up to the stenoses and it might even cause full obstruction. I am sure they can help with that as more and more experience is gathered.
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Postby Cece » Sun Apr 03, 2011 9:56 am

Could the vein collapse due to an elastic recoil without scarring to a narrower position than it was originally; so the stenoses would be greater?

Yes, this is something that Dr. Siskin's office warns about, they will honor the wishes of the patient for no stents unless this very situation occurs, where after ballooning the vein immediately recoils back so it was worse than it began. Last summer in July they said it had happened only a few times. This same warning was repeated to a patient just a month or two ago, the patient mentioned it in his blog that I posted a link to in the Albany Community Care thread. I can imagine a situation where the doctor unknowingly balloons a physiological narrowing, which would return immediately to its original state, and then gets stented when no stent was needed there. If ivus were used, this would eliminate this concern for me.
I wanted to find out if there ican bee seen any abnormailities in the other two veins, but so far no anwser from dr Sclafani.

I wish you had images of your iliac vein or ascending lumbars, those are sometimes an issue for patients with ppms.
Lyon wrote:*later....I think "shorter" got into my mind due ONLY to his stated desire not to dilate normal vein.

It is definitely a goal I can agree with, whether it's achieved by shorter balloons or smaller diameter balloons or other methods currently undiscussed.
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Postby Liberation » Sun Apr 03, 2011 10:16 am

Cece wrote:I can imagine a situation where the doctor unknowingly balloons a physiological narrowing, which would return immediately to its original state, and then gets stented when no stent was needed there. If ivus were used, this would eliminate this concern for me.


It must be a silly question, but how is a stenosed vein look like? I thought it is like a pipe which has a segment that is phisically narrower, tighter, so I have to stretch the material of its wall to get it wider.
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Postby Cece » Sun Apr 03, 2011 10:24 am

At least in these sorts of images, it looks to me like you are right, there is a bulge in the wall right where the stenosis is when it's ballooned:
http://webdoc.nyumc.org/nyumc/files/cv/ ... plasty.gif
(although I don't know how accurate that is plus it is an artery with plaque instead of a vein with a valve malformation, but all the images look like that):
http://tinyurl.com/4xzh3db
What does that mean?
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Postby Liberation » Sun Apr 03, 2011 11:19 am

Cece wrote:At least in these sorts of images, it looks to me like you are right, there is a bulge in the wall right where the stenosis is when it's ballooned:
http://webdoc.nyumc.org/nyumc/files/cv/ ... plasty.gif
(although I don't know how accurate that is plus it is an artery with plaque instead of a vein with a valve malformation, but all the images look like that):
http://tinyurl.com/4xzh3db
What does that mean?


It looks interesting. That is not what I thought. It looks like the vein wall is thicker in a certain segment and that causes the narrowing. I thought the vein wall would have the same thickness but somewhere it would get thinner like in the top of a bottle. But either case, the vein wall's mterial needs to be streched and the vein wall can probably lose its elasticity if it is overstretched, isn't it?
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Postby drsclafani » Sun Apr 03, 2011 9:01 pm

Cece wrote:
Liberation wrote:Mine was treated by a really small (6mm) but dr Sclafani told me it was too long and unnecessary damages the healthy parts. Did he use longer balloons in your case bacause of the small size of the balloon? Otherwise would he use longer ones? :)

Actually length of balloon is fairly standard as far as I know. I may have miscommunicated that; someone once asked about using short balloons but they are not practical. Placement of balloon and balloon's shoulder matters too. Let's see...
How many patients has he treated since he uses ivus?

He has treated over 100 patients.
How are his results fair with his older results with giant balloons?

too soon to tell as far as I know (drsclafani, if you find this, these are yours to answer.... :)
I would like to get an appointment from him; however, I am still afraid of getting thrombosis on the plane.

Does your regular doctor have any ideas? Could you take something preventatively? At least on the way back, you'd be on Arixtra, an anticoagulant which prevents thrombosis.
My IR told me that he does not understand why others do not use ivus.

Without IVUS, imo, there is not the same certainty that everything has been found and treated appropriately. I was really glad to have it used.

Does anyone know, has Dr. Sinan been in communication with the other doctors about the concern over large balloons?


ok
i got very worried about a run of thromboses, shortly after using larger high pressure balloons. Some of these "thromboses" were not actually thromboses. They were reports by sandy mcdonald of post procedure followup ultrasounds where he used the term "block" or "no Flow" that i interpreted as being thromboses. It put me all out of whack.

but the combination of a few thromboses and these "non" thromboses scared the S**t out of me. As i critically analyzed my earlly second experience, and started to understand the nature of the stenosis, it becamse clearer that the concept of very large ballons was overstated.

I have done several things and will be doing more to address this

1. get a really accurate wall diameter by IVUS
2. start dilating to the size of the vein wall, not greater. if repeat ivus shows persistent valvular stenosis, go up in size but take care where the balloon is placed
3. i used to center the balloon on the stenosis, now i position the balloon eccentrically to place a shoulder of the balloon near the stenosis, and thus avoiding intimal damage where there is no stenosis
4. i have started trying 2 cm balloons, not as easy to work with as the 4 cm balloons, but less intimal injury
5. My anticoagulation regimen contains an antithrombin drug and i am adding an antiplatelet drug to it I may prolong therapy from 20 days to 30 days
6. I am more careful to assure myself that there is flow coming from the brain. no flow from above leads to high risk of thrombosis


So getting a beat on techniques used by treating physicians is a moving target, isnt it.

btw i havent detected a thrombosis in a long time except for the hypoplasias which everyone is finding to be really difficult and challenging.
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Postby drsclafani » Sun Apr 03, 2011 9:06 pm

LR1234 wrote:My vascular surgeon has also ligated internal jugular veins and this has not caused problems in his patients. I understand the argument is it can take years for symptoms to develop but collaterals can form and can be pretty large. (My haemotologist reckons 2 years for new veins to grow)

I may be wrong with this but my understanding is that you get scarring in the veins that then leads to the vein collapsing. Maybe the vein can collapse without scarring though???
My left jugular is scarred to the point of total occlusion but has not yet collapsed....


i had the jugular vein of my wife tied off because the sound of the jugular vein passing by her ear was so loud she could not hear. This was in the mid 1980s. she did have fatigue and some short term memory issues that have now resolved. Thankfully she did not have the problem in both ears. I might have thought to tie off both. Imagine that!

it is odd how these veins that can be tied off with iimpunity can cause so much trouble.
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