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

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Postby chrishasms » Sat Nov 21, 2009 7:36 pm

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Postby mrhodes40 » Sat Nov 21, 2009 8:47 pm

Dr Dake told me he expects these to last when I asked him but arterial stents do need replacing often and these in these locations are new use of them so I am not sure anyone should make any promises about that. In other words; how could anyone know?

That is what happens with new treatments, I mean Jeff has had a stent for 7 months or so now I have them for 6. Never before that has anyone put a stent in the jugular veins in those locations for that reason. I can say that mine has worked great for 6 months................ 8)
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby chrishasms » Sat Nov 21, 2009 9:19 pm

:)
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Postby CureIous » Sat Nov 21, 2009 9:29 pm

mrhodes40 wrote:Dr Dake told me he expects these to last when I asked him but arterial stents do need replacing often and these in these locations are new use of them so I am not sure anyone should make any promises about that. In other words; how could anyone know?

That is what happens with new treatments, I mean Jeff has had a stent for 7 months or so now I have them for 6. Never before that has anyone put a stent in the jugular veins in those locations for that reason. I can say that mine has worked great for 6 months................ 8)


Yeah I would also note that jugs have little pressure compared to arteries, and augment that by saying that they are in a place that gets quite a bit of movement though! :)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Sun Nov 22, 2009 7:01 am

I agree Mark! I am hopeful for those reasons myself that they will be long lived. :D

It would be tricky to replace them should such a thing be necessary though. It just bears mentioning.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby radeck » Sun Nov 22, 2009 7:24 am

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Postby Arcee » Sun Nov 22, 2009 8:26 am

And Dr. Dake told me that he has a patient who has one, for non-CCSVI/MS reasons, for over ten years now...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby radeck » Sun Nov 22, 2009 9:22 am

redundant post
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Postby Loobie » Sun Nov 22, 2009 9:28 am

Boy, I never even considered this. Something to think about for sure. Howver, if mine deteriorate, I'll get them put back if they re-stenose and I'll be saying "'watch my damn spinal accessory nerve! :lol: ".
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Postby chrishasms » Sun Nov 22, 2009 10:39 am

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durability of stents

Postby GiCi » Mon Nov 23, 2009 5:13 am

It is difficult to extrapolate the knowledge accumulated so far of the behaviour of arterial stents to the fate of stents in the jugular veins. As it has rightly been said in this topic the mechanism of the obstruction is completely different in the two compartments: accumulation of cholesterol in the inner layer of the arteries, congenital malformation in the jugular veins.
Similarly the mechanism of re-obstruction inside a stent would probably be different.
The possibility, that has been suggested, of resecting the obstructed stent and replacing it with a segment of another conduit is a realistic one (two segments of saphenous vein from the leg can be opened up longitudinally and sutured together to form a cilinder). This would be easy enough in the lower part of the jugular veins, and could be more complicated, I imagine, near the skull.
We are unfortunately in a new unexplored field and we have to wait for medium-term and long-term results to be available. Encouraging is the fact that "so far so good".
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Postby jay123 » Mon Nov 23, 2009 1:58 pm

Please don't take this as me stating facts, because the mind is a little fuzzy as to aht I was told.... but I believe Dr. Dake mentioned to me that they have been using stents in veins for leg problems (particularly in the hip) for quite a while. This was in response to my question about the issue of stents in veins, etc.
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Postby CureIous » Mon Nov 23, 2009 5:40 pm

I'm not concerned too much about it, jugs have so little pressure compared to arteries anyways. Only consideration would be the constant flexing and movement in the neck area during the course of a day...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby kiara » Mon Nov 23, 2009 6:36 pm

I thought Dr. Zamboni used the balloon style & stretched the vein & then removed. He would do again if it didn't stay open.
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Postby Dovechick » Tue Nov 24, 2009 4:55 am

kiara wrote:I thought Dr. Zamboni used the balloon style & stretched the vein & then removed. He would do again if it didn't stay open.

I think from what I have read that using balloons is what they did, but also something I read in a different thread suggested that the number of 'restenoses' is greater with the balloon procedure than with the stent. Which is why (again something someone wrote) Dr Dake uses stents...

The other issue here is that of lack of long term data, but in spite of that I think it is worth the risk, what have we got to loose. My daughter is of the group of people who could not live to be totally dependent on others for her daily needs and can only see a short future for herself. If we can change that even for a few years it must be worth the risks.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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