If you are planning to avoid stents...

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

If you are planning to avoid stents...

Postby bruce123 » Sat Dec 04, 2010 7:26 am

My wife was recently treated in Albany. For the past 6 months we had been debating the risks and benifits of stents. We recognised the value of them but we had been following the increasing numbers of people reporting thrombosis and we finally decided to not get a stent even if that meant the procedure was not going to work. We figured that the risk was too high and we would wait a couple of years to see what has been learned and we could always go back for a stent if we changed our mind.

When we told them at the clinic of our decision they told us that we had to sign a document that gave them permission to use a stent if they had to. The problem is that there is the chance that they could damage the wall of the vein while doing the procedure and would need a stent to repair it. This made sense to us but we had not planned for it so it created one more thing to worry about. The doctor understood that we didn't want a stent just to improve the flow and assured us that they only use stents as a last resort.

I thought I'd mention this so others are not surprised like we were.

Bruce.
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Postby Cece » Sat Dec 04, 2010 9:34 am

This fits with what I was told in July. At that time the scenario was that if he ballooned a vein and it recoiled back worse than it had started, then I'd have to agree ahead of time that he could use a stent. It was reasonable but I didn't want the risk.
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Postby Rici » Sat Dec 04, 2010 10:20 am

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Postby Blaze » Sat Dec 04, 2010 12:14 pm

Thanks for that valuable info. I definitely do not want stents and am on the waiting list for Albany. The heads-up is great--although because of some issues from my MRV in the transverse and sigmoid sinuses in my brain, I think it is unlikely I will proceed with treatment outside of Canada.

From another thread, I understand your wife did not have any immediate improvement, but had a couple of pain free nights of sleep. Hopefully, improvements may follow.

Because you didn't say in either this thread or the other one, I assume your wife did not get a stent. Is that correct?

Wishing your wife a good recovery. I'm glad she has you beside her on this journey.
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I selected 'no stents' surgeon

Postby MarkW » Sat Dec 04, 2010 12:47 pm

Hello Bruce,
I went to Athens Greece rather than Poland to make sure that stents would never be inserted into me at this stage of the development of the procedure. If Albany will not give you the assurance you desire then talk to another clinic (Prof Sclafani does not use stents).

I think your proposed 'no stents' choice reduces risk.

Kind regards,

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby bluesky63 » Sat Dec 04, 2010 3:30 pm

I would have felt really nervous going in thinking there was even a chance I could have a stent, since I had determined that I should not be a stent candidate at this time (for many reasons including not being on anticoagulants for an extended period). Interesting that you had to sign a document.

This again highlights the differences among professionals offering the procedure. I am not at all judging people who have a stent; everyone has to make a separate choice. But everyone should have a chance to make an informed choice.

All the best for recovery. :-)
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Postby patientx » Sat Dec 04, 2010 5:30 pm

I think the point of Bruce123's post is being missed:
bruce123 wrote:The problem is that there is the chance that they could damage the wall of the vein while doing the procedure and would need a stent to repair it.

Sometimes during ballooning of a vein, it can rupture. And sometimes a stent is needed for repair (though it may heal on its own).

I guess the stent could still be declined if this happens, with the other choice being to potentially bleed out. It sounds like bruce's doctor was being up-front about all the potential complications.
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Postby Cece » Sat Dec 04, 2010 6:53 pm

I'm not sure if by damaging the wall, that means rupture or if it also includes the scenario I was given last summer, where the vein recoils so that it's worse than it began.

Rupture had three methods to deal with it: manually compress it (this can be done in the neck but obviously not the azygous); ummmmm I think number two was use the balloon to compress it from the inside; and third possibility was use a stent. So even in that scenario, the stent would not have to be the very first option tried. I am not sure how the use of anticoagulants before the procedure, so the patient is anticoagulated during the procedure, would affect the results of #1 and #2 methods. Rupture had not happened in any of Dr. Sinan's patients, despite the use of aggressive big ballooning.
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Postby NotFound » Sat Dec 04, 2010 7:35 pm

patientx wrote:I think the point of Bruce123's post is being missed:
bruce123 wrote:The problem is that there is the chance that they could damage the wall of the vein while doing the procedure and would need a stent to repair it.

Sometimes during ballooning of a vein, it can rupture. And sometimes a stent is needed for repair (though it may heal on its own).

I guess the stent could still be declined if this happens, with the other choice being to potentially bleed out. It sounds like bruce's doctor was being up-front about all the potential complications.


That's the way I understood it as well.

Thanks for the heads-up Bruce!
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Postby patientx » Sun Dec 05, 2010 12:25 pm

Cece wrote:I'm not sure if by damaging the wall, that means rupture or if it also includes the scenario I was given last summer, where the vein recoils so that it's worse than it began.

Rupture had three methods to deal with it: manually compress it (this can be done in the neck but obviously not the azygous); ummmmm I think number two was use the balloon to compress it from the inside; and third possibility was use a stent. So even in that scenario, the stent would not have to be the very first option tried. I am not sure how the use of anticoagulants before the procedure, so the patient is anticoagulated during the procedure, would affect the results of #1 and #2 methods. Rupture had not happened in any of Dr. Sinan's patients, despite the use of aggressive big ballooning.


http://www.ncbi.nlm.nih.gov/pubmed/19449065

I guess these doctors should have consulted with you first.
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Postby MrSuccess » Sun Dec 05, 2010 1:28 pm

just a suggestion PX ..... why don't you share any valuable information you have before hand . Otherwise .... it seems like you are laying a trap.

we all know how well read you are .....

By all means .... please continue to alert TIMS readers to important research and information ...... to add to the mix.




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Postby Cece » Sun Dec 05, 2010 1:51 pm

I was paraphrasing what I'd learned in Dr. Sclafani's thread.
drsclafani wrote:
Cece wrote:...
My questions: are these high pressures now enough to increase the risk of rupture? Is this going beyond what Dr. Sinan had been doing, since we've been relying on his reported demonstration of safety?

In the unlikely event of rupture, what would you do? A few months back, it was said on the forum by someone that some doctor (sorry, I can dig for specifics....) had experienced a rupture and had solved it by placing a stent.


I think that the pressure is not the major concern, it is the diameter that is most important. Once Dr. Sinan showed me that the vein could tolerate the size, i decided to use them. however dr sinan is using "poor man's cutting wires" to raise the pressure effect. It just didnt seem like it would be as effective as high pressure balloons. Of course there is risk of rupture, even at 10 mm. we will have to see over time as we hear reports of rupture incidence in the literature.

i can think of three ways to reduce bleeding from tears
1. manual compression of the torn vein
2. a stent to allow blood to flow by the torn area
3. reinflation of a balloon to allow some sealing of the tear.
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Postby patientx » Sun Dec 05, 2010 3:24 pm

MrSuccess wrote:just a suggestion PX ..... why don't you share any valuable information you have before hand . Otherwise .... it seems like you are laying a trap.
Mr. Success


This isn't some sort of game to me. The article referenced was posted many months back courtesy of scorpion:

http://www.thisisms.com/ftopicp-121090-.html#121090
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Postby HappyPoet » Sun Dec 05, 2010 4:17 pm

A vascular surgeon could deal with a tear in a fourth way... with a quick opening of the neck or thoracic cavity and stitching up the tear.
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Postby MrSuccess » Sun Dec 05, 2010 5:33 pm

another great example of the value of TIMS.

We learn more each day .... about veins ... what is possible and what is not.

As much as I have learned ...... Mr. Success has a gut feeling that most stenosis' are EXTERNAL in causation . :idea:

Without benefit of having peered into the human body ..... it appears the route of our veins is determined by ..... surrounding tissue.

When looking at posted MRI's .... I try to imagine WHY the vein takes such an odd path .... Is it roughly the same for each person ?

Not likely.

I suspect EBV plays a role ...... or possibly trauma ..... that causes the surrounding body tissue to swell and close off blood flow .

Once the veins are collapsed ...... there is not enough pressure in the vein to overcome the external pressure exerted upon it.

A stent ..... might be the solution ...... better yet ..... a DISSOLVABLE stent. :idea:

That and getting the surrounding - offending tissue & bone ..... to release it's grip. :roll:



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