clotted off jugulars

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

Postby Cece » Fri Apr 01, 2011 3:51 pm

Could've been this comment?
www.thisisms.com/ftopicp-153151.html#153151

he does say he is going to try shorter balloons! Interesting.
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Postby Lyon » Fri Apr 01, 2011 7:26 pm

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Postby Brainteaser » Fri Apr 01, 2011 7:39 pm

Cece wrote:If Dr. Zamboni's team has done 5 surgical jugular vein reconstructions, as hinted at in the ISNVD abstracts, I want to hear how those went!

Prof Zamboni answered some questions at a CCSVI session in Melbourne last night and I thought he said in answer to one question that his Italian team had undertaken 10 surgical resections of jugular veins. There was no other info. This might be the CCSVI way of the future, bringing in the vascular surgeons to join the IRs. Should be worth watching.
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Postby griff » Sat Apr 02, 2011 12:40 am

pklittle wrote:I think is is pretty clear that the 1-2% rate with Dr. Sinan is a myth.

I think we have come a long way since I read the first article in Globe and Mail that an Italian doctor found a simple and safe cure for MS. Now, what I see is more and more problems. I am also wondering how that 1-2% restenoses rate is realistic. However, we should not forget that health care is just as business as a car dealership. We all saw a lot of crooks there. There is a saying that every person is a slut, only with different prices. In East Europe, most of our health care system is state owned. However, with a very very few exceptions (I know only one) only private clinics do such treatment. I would see more vindication if these state owned hospitals would be more involved as the opinion of those doctors would not be affected by money. I am afraid that 10,000 dollars for an operation in Egypt, Poland, Bulgaria and Romania, where the real cost of such treatment is not more than 1,500-2,000 dollars and the annual salary of a doctor is not more than 30,000 dollars, is very tempting. I am also a patient who got restenosed and I must say it is impossible to make a good decision regarding this operation. A month ago I read all the good things about large balloons and dr Sinan....
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Postby WinnipegGirl_83 » Sat Apr 02, 2011 8:12 am

I agree Griff. I made the best decision that I could at that time. I was also in a complete state of panic, fear, and anxiety. That did not help the situation.
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Postby Liberation » Sat Apr 02, 2011 2:27 pm

WinnipegGirl_83 wrote:I agree Griff. I made the best decision that I could at that time. I was also in a complete state of panic, fear, and anxiety. That did not help the situation.


Yes you did the best decision at that time and there is no guarantee that with another technique it would not have happened. By the way, how did you notice that your IJV got occluded? Did those 4 Canadians whom you are in contact with had scarring and full oclusion of the vein as well or only just a collapse of the vein?
I also heard today from a neurosurgeon that it is quite typical that they tie up one of the veins, like IJV when they have a brain surgery. However, they did not notice any MS like symptoms to develop; therefore, he does not think that CCSVI a major cause of MS, only something that can make things worse. It would be good to refute this thought.
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Postby Liberation » Sat Apr 02, 2011 3:26 pm

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 might have misunderstood something, but it sounded to me that their IJVs were left tied up, so they would have had many years to devlop MS. It would be good to know how he meant it.

I do not know what are the steps of collapsing of the vein, but I thought that scarring would make the vein wall thicker and this would result in a narrower vein, while when the vein collapses, it just returnes to its former stage. Anyone knows?
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Postby vivavie » Sat Apr 02, 2011 4:00 pm

When my jug collapsed after my 2nd angio (to open my blocked stent) i knew there was something wrong a few days after. I was going downhill very fast! It was horrible!!
When my stent blocked - candy wrap stenosis - i lost my improvements gradually after 6 weeks, then it was a slow steady degradation.
When I had a thrombosis I did not have time to feel any difference, they caught it with the US the day after.
Now I keep having hyperplasia in my stents but I never feel the difference when they clean them open. I ALWAYS feel like crap with fatigue and legs/feet pain, way worse than before my 1st angio.

All this happenned while on Plavix + coumadin + on/off clexane, lovenox and Arixtra.

There is sooo much to learn...
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Postby Cece » Sat Apr 02, 2011 5:34 pm

Liberation wrote:I might have misunderstood something, but it sounded to me that their IJVs were left tied up, so they would have had many years to devlop MS. It would be good to know how he meant it.

It's almost always just one jugular ligated. Sometimes in cases of extreme bilateral neck dissection for cancer, two jugulars are ligated. There can be consequences of this, there's a lot in google scholar on it.

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?

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.
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Postby Lyon » Sat Apr 02, 2011 6:28 pm

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Postby Cece » Sat Apr 02, 2011 6:58 pm

Thanks for finding it, Lyon. I read that as him saying smaller diameter, not shorter in length.
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Postby Lyon » Sat Apr 02, 2011 7:15 pm

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Postby Lyon » Sat Apr 02, 2011 7:18 pm

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Postby Brainteaser » Sat Apr 02, 2011 8:52 pm

Cece wrote: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?

I suspect you are right re your reasoning, Cece.

Prof Thomson in Melbourne said to me that an unsuccessful surgical resection might lead to a tying off of an IJV where for most people, operating on one fully functional jugular vein is OK - but it's perhaps more problematic for people like ourselves where both veins are compromised.
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Postby WinnipegGirl_83 » Sat Apr 02, 2011 10:31 pm

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.
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