This Is MS Multiple Sclerosis Knowledge & Support Community

Bingo!

How are you feeling Radeck after your ordeal? I hope you are starting to recover xx

Sharon wrote:Mark -

I did not post my images for many of the same reasons you have taken yours down. We just do not know who is lurking around the Internet -- I would not want someone using my images to make a negative case study of their own.

Sharon

Yes, but when the time comes, they will be put back and freely distributed for all to see. This fight is not mine to wage, and if anything becomes of anything, I sure as heck don't want my name in the middle of it. At least as far as images go. Everything else is up for grabs as far as I'm concerned, within reason, not neglecting that posting personal communications without the other parties knowledge for the whole world to see, is disrespectful, no less than if you hung up the phone with someone and then posted the entire conversation to the internet. There is an implied expectation of privacy involved here, maybe not legally, certainly on a moral level.
This really is a new way of doing things, mixing MANY patients interactions and experiences all tied into one specific doctor and hospital. There is no parallel on the internet that remotely approaches the scope, and gravity. So my default position is caution, and I do hope others are exercising that too until we can aver with certainty, honesty and integrity, not just innuendo and gossip.

Mark

Today I found the most optimistic (besides Dake) experienced physician opinion so far on this, from head of vascular surgery of a nearby university hospital. He of course said that he couldn't make definitive statements about jugular vein stents because of lack of long term data, but made some arguments why the patency of stents in that area may be better than of other stented veins, and concluded with his guess that 5-year survival could be as high as 50%, that is per jugular vein assuming there's a single stent in it.

It was also interesting that he agreed with and explained further my theory for why I have the pounding in my head and neck: the carotid arteries weren't pumping against soft absorbent medium anymore but banging against the 14 mm wide stents in my jugulars, and the shacking I'm feeling was simply the transmission of my heartbeat to the head and neck. So I guess I'll have to live with it and possible consequences.

A comment on the "duplex" test Lisa mentioned, the first thing that came to my mind (not to disagree with Mark though) is that he might want to try to open both upper and lower narrowings with a balloon first before putting in stents at either height. A possible reason he had speculated to me for why the upper stent fell out (apart from the obvious one that the stent had been narrower to reduce risk of accessory nerve damage) was that putting in the lower jugular stent (after the upper stent) may have changed the flow dynamics of the vein such that the upper segment became wider. Indeed when they did a new venography two and a half days later they found that the upper vein was completely fine, with pressure gradient reduced from 2.5 mmHg to 1 mmHg (he said in a different context that gradients of order 1mm Hg gradients are nothing to worry about, may be just inaccuracies in the measurement). So that would support doing a test starting from both upper and lower end.

He of course said that he couldn't make definitive statements about jugular vein stents because of lack of long term data, but made some arguments why the patency of stents in that area may be better than of other stented veins, and concluded with his guess that 5-year survival could be as high as 50%, that is per jugular vein assuming there's a single stent in it.

I’m sorry for not getting this right away, but it's an important point and I want to understand as clearly as I can. Was he estimating there was a 50% chance that

- the stents might remain functional for 5 years OR
- that the veins would remain clear for 5 years OR
- that the veins would be functional at all for 5 year OR
- something else that I’m too thick to understand right now?

Of course there is an important follow-up question - what could be done after that? But that might not have been part of your conversation...

In any case, good work getting someone with the right background to talk about this!

-d

radeck wrote:Today I found the most optimistic (besides Dake) experienced physician opinion so far on this, from head of vascular surgery of a nearby university hospital. He of course said that he couldn't make definitive statements about jugular vein stents because of lack of long term data, but made some arguments why the patency of stents in that area may be better than of other stented veins, and concluded with his guess that 5-year survival could be as high as 50%, that is per jugular vein assuming there's a single stent in it.

Did he say what he thought the likely complications would be? On one hand, if a stent fell apart in my vein I would be pretty unhappy. On the other hand, if it just needed a clean up, that wouldn't be so bad.

radeck wrote:A comment on the "duplex" test Lisa mentioned, the first thing that came to my mind (not to disagree with Mark though) is that he might want to try to open both upper and lower narrowings with a balloon first before putting in stents at either height. A possible reason he had speculated to me for why the upper stent fell out (apart from the obvious one that the stent had been narrower to reduce risk of accessory nerve damage) was that putting in the lower jugular stent (after the upper stent) may have changed the flow dynamics of the vein such that the upper segment became wider.

So he doesn't think putting the upper one in second could change the flow dynamics and cause the lower to fall out?

Thanks radek, for sharing all of that information. You've obviously had a hell of a time of it, and it is important for me, and I'm certain most others, to have all the info. possible. You are uniquely positioned to share the possible down-sides.

I have never been very comfortable with the idea of stents, for what it is worth. I just hope that they are not suggested to be required in my own case. That will be a tough decision.

radeck wrote:

A comment on the "duplex" test Lisa mentioned, the first thing that came to my mind (not to disagree with Mark though) is that he might want to try to open both upper and lower narrowings with a balloon first before putting in stents at either height. A possible reason he had speculated to me for why the upper stent fell out (apart from the obvious one that the stent had been narrower to reduce risk of accessory nerve damage) was that putting in the lower jugular stent (after the upper stent) may have changed the flow dynamics of the vein such that the upper segment became wider. Indeed when they did a new venography two and a half days later they found that the upper vein was completely fine, with pressure gradient reduced from 2.5 mmHg to 1 mmHg (he said in a different context that gradients of order 1mm Hg gradients are nothing to worry about, may be just inaccuracies in the measurement). So that would support doing a test starting from both upper and lower end.

We'll take any and all information we can get, especially from other vascular doctors. I'm inferring from this, that angioplasty on the lower stenosis, if indicated, can open up the stenosis up higher?

I'm easy to disagree with, I'm not a doctor!

Good to hear from you Radeck and VERY good to hear there is a possible explanation for the pounding. Is it possible the body can adapt and adjust to the increased pressure radiating outward? Nature is kind of funny like that. I had a neighbor with an OBNOXIOUS lime tree growing over the fence, dumping fruit and leaves. I put a shed in that location, which interfered with the ability of the tree to hang over. It's been two years now, and the tree actually grew UP instead of OVER the roof of the shed.

Bad example for veins duh, but interesting how nature adapts adjusts in ways we can't see in the short term.

Mark.

Rokkit wrote:

radeck wrote:
So he doesn't think putting the upper one in second could change the flow dynamics and cause the lower to fall out?

Well in my mind, if the lower one is put in, and the upper opens, you don't NEED the upper one. The flow itself opens up the upper part.

Mark.

Rad - this is kinda along the lines - I do't have the text of the full study but it sounds interesting - I know they are talking artieries but..

on a side note I heard a rumor this group is looking at CCSVI too.... They have done some leading rearch into stents.

SUMMARY: Intracranial stent placement is emerging as an effective treatment for acute stroke. As a means to avoid stent-associated complications and capitalize on stent-placement-related advantages, the concept of a "temporary endovascular bypass" (TEB) for stroke therapy was recently reported. In this technique, a stent is temporarily deployed for instant recanalization. Once sufficient flow is established to maintain vessel patency, the stent is recaptured and withdrawn.

http://www.ajnr.org/cgi/content/abstract/ajnr.A1536v1

Mark,

I am counting on it working that way..., if not, what is the alternative....a really long stent?

Thanks for all the input!

Lisa (aka, CNClear)

Radeck,

How are you? Do you still feel the pounding in your head? How is your heart surgery recovery going? And what about your jugular stenosis status? Is it solved now? Are you physicaly well enough to evaluate the benefits (or no benefit) of your newly fully functioning veins? What are your recommendations for those of us who would like to get the procedure done?

I hope you're OK.

Yannick

I saw that he posted in the tracking thread not too long ago. I would sum up here, but I don't want to misquote him.

Hi

Dr Simka told me - when he examined me, that my 'collapsed' vein would inflate if I had a stent or balloon inserted in the lower part of my left jugular. He felt that was enough - even though there was not much blood flowing in the entire left jugular vein.

This is his own words:

"There are sonographic signs of the chronic cerebrospinal venous insufficiency due to pathologic valve in the junctions of left internal jugular veins with brachiocephalic vien."

Christian

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