This Is MS Multiple Sclerosis Knowledge & Support Community

1eye wrote:Why? Because only money-grubbing capitalists like Simka say it is safe? What about Zamboni and Zivadinov, and the others we know about? Well, we prevented as much Liberation as possible, but a few slipped through the cracks, so safety was established but we never said they could, so it doesn't count?

What could Dr. Zivandinov say about the safety of the prociedure? How many patients has he treated? For that matter, what statements has Dr. Zamboni made about safety?

Have you bothered to read the posts where people describe the bad complications (stenosis of the vein worse than before the procedure, blood clots, etc) they have had?

Cece wrote:The people at this website are sufficiently informed. It's people who hear about this procedure from other people and never read up on it that might not be. But most of them will be filled in by the IR doing their procedure. Any IR who is doing this procedure without explaining in full what it is and what can and cannot be expected has failed his patients.

A website, no matter how informative, should not be the final source for medical information.

As to being informed, when this procedure first started in the U.S., there was no mention on TIMS about the possibility of a stent coming loose and getting into the heart. No one knew about this possible complication. (But there are published case reports where this did happen.) So, the doctors doing this procedure do not know all the possible risks, or aren't saying.

I wonder how many people who read this website realize that a vein can tear during angioplasty, and the fix can be - a stent.

And this doesn't even start to address the issue of whether the procedure actually does something for MS.
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Edited to add "not" per Lyon's excellent proofreading.

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A website, no matter how informative, should be the final source for medical information.

In the best of worlds, yes! We are in a discovery phase with CCSVI. My GP had not heard of it but looked over the papers and was supportive; my neurologist was negatively biased but not as full of misinformation as some.

patientx wrote:As to being informed, when this procedure first started in the U.S., there was no mention on TIMS about the possibility of a stent coming loose and getting into the heart. No one knew about this possible complication. (But there are published case reports where this did happen.) So, the doctors doing this procedure do not know all the possible risks, or aren't saying.

There are published case reports of it? Huh.

My thought on the same info is that, while people here did not anticipate such an outcome, now that it has happened we have far more awareness of this risk thanks to this site and others like it.

But you raise some good points.

I wonder how many people who read this website realize that a vein can tear during angioplasty, and the fix can be - a stent.

This would be the same as what drsclafani is saying when he talks about the risk of rupture during ballooning? Dr. Sinan has performed a large number of procedures with his supersized ballooning without rupture. My expectation is that this is a small but potentially real risk. Most people here seem more comfortable with stents than I have been! Although maybe that is changing, as more outcomes surface.

Also from when I was researching the cutting balloon, it justified the 'controlled indents' of the cutting balloon by saying that all angio can create some small tearing. No biggie.

And this doesn't even start to address the issue of whether the procedure actually does something for MS.

Dr. Dake's paper that should've been published last fall (but wasn't) might have helped with that question. As it is we have the one paper by Zamboni.

Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS

NICE has been notified about this procedure and has considered it as part of the Institute’s work programme. The procedure is being monitored as we are awaiting use in the NHS.

The procedure will be reconsidered at regular intervals to determine whether this has been resolved.

http://guidance.nice.org.uk/IP/891

NICE is the UK's Governing body for medical procedures - medications
NICE are the ones who will pass CCSVI to be carried out of the NHS

NICE have raised their concerns (2009) over DMD drugs and its lack of effectivenes and have asked drug company's to reduce the cost supplied to the NHS

Dr Hubbard commented on NICE and the DMD in the lastes video posted by joan beal - http://ccsvi.org/

Cece wrote:

A website, no matter how informative, should be the final source for medical information.

In the best of worlds, yes! We are in a discovery phase with CCSVI. My GP had not heard of it but looked over the papers and was supportive; my neurologist was negatively biased but not as full of misinformation as some.

patientx wrote:As to being informed, when this procedure first started in the U.S., there was no mention on TIMS about the possibility of a stent coming loose and getting into the heart. No one knew about this possible complication. (But there are published case reports where this did happen.) So, the doctors doing this procedure do not know all the possible risks, or aren't saying.

There are published case reports of it? Huh.
My thought on the same info is that, while people here did not anticipate such an outcome, now that it has happened we have far more awareness of this risk thanks to this site and others like it.

But you raise some good points.

I wonder how many people who read this website realize that a vein can tear during angioplasty, and the fix can be - a stent.

This would be the same as what drsclafani is saying when he talks about the risk of rupture during ballooning? Dr. Sinan has performed a large number of procedures with his supersized ballooning without rupture. My expectation is that this is a small but potentially real risk. Most people here seem more comfortable with stents than I have been! Although maybe that is changing, as more outcomes surface.

Also from when I was researching the cutting balloon, it justified the 'controlled indents' of the cutting balloon by saying that all angio can create some small tearing. No biggie.

And this doesn't even start to address the issue of whether the procedure actually does something for MS.

Dr. Dake's paper that should've been published last fall (but wasn't) might have helped with that question. [bAs it is we have the one paper by Zambon[/b]i.

Right. So far, after over a year, all is we have is some tenuous paper from Zamboni and a lot of yelling and screaming. What I have learned from all of this is that if you yell loud enough, whether what you say makes sense or not, people will eventually listen. This is especially true if you have a simple explanation for a complicated problem(like MS).

nah, it's a simple explanation for a simple problem (like ccsvi)

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Et vlan!
Bravo Cece!
No brain fog for you today

thanks vivavie!

Lyon wrote:

Cece wrote: Also from when I was researching the cutting balloon, it justified the 'controlled indents' of the cutting balloon by saying that all angio can create some small tearing. No biggie.

Well whose "No biggie" was that? I can't imagine a competent person in medicine feeling that creating a clot source is "no biggie".

I am no person in medicine, but an internet poster like yourself, dear DD. I mean that in getting angio, we are getting very small tears in the vein regardless.

IMO, anyone getting angioplasty should be getting angicoagulants, although not all are. Angioplasty without anticoagulants would indeed be a biggie.

Lyon wrote:Good points px!

Where you wrote

px wrote:A website, no matter how informative, should be the final source for medical information.

I think you meant

px wrote:A website, no matter how informative, should NOT be the final source for medical information.

Us alter egos have to watch each other's backs!

Thanks for the catch - though I wonder if I had it right the first time.

Cece wrote:

patientx wrote:As to being informed, when this procedure first started in the U.S., there was no mention on TIMS about the possibility of a stent coming loose and getting into the heart. No one knew about this possible complication. (But there are published case reports where this did happen.) So, the doctors doing this procedure do not know all the possible risks, or aren't saying.

There are published case reports of it? Huh.

Minimally invasive removal of a dislocated stent from the right atrium
Severe Tricuspid Regurgitation Secondary to Subclavian Vein Stent Migration
Complete atrioventricular block due to venous stent migration from innominated vein to right ventricle

Also, Dr. Zamboni seems to have realized this is a possible complication:

The logical alternative would be stent insertion. However, we refrained from using this option due to the absence on the market of dedicated devices of the proper size and length. Adapting existing stents at the level of the IJVs could increase the risk of pulmonary migration and
displacement, thus affecting venous outflow from the upper extremity.

("A prospective open-label study of endovascular treatment of chronic erebrospinal venous insufficiency," Zamboni, et al)

The point isn't to scare people about stents. If that is the fix for MS, then so be it.

My thought on the same info is that, while people here did not anticipate such an outcome, now that it has happened we have far more awareness of this risk thanks to this site and others like it.

True, and I think that's one of the things that makes this site valuable. But I don't think it's a good idea for someone to believe he or she knows all the in and outs and possible complications based on this website. Unfortunately, I don't think a person can rely on an IR to tell him everything he needs to know about having angioplasty for MS, either.

I wonder how many people who read this website realize that a vein can tear during angioplasty, and the fix can be - a stent.

This would be the same as what drsclafani is saying when he talks about the risk of rupture during ballooning? Dr. Sinan has performed a large number of procedures with his supersized ballooning without rupture. My expectation is that this is a small but potentially real risk. Most people here seem more comfortable with stents than I have been! Although maybe that is changing, as more outcomes surface.

I don't know if this is the same thing that Dr. Sclafani was talking about or not. You're right this is probably a small risk, and that it is a real risk:

Successful Emergency Stent Implantation for Superior Vena Cava Perforation During Malignant Stenosis Venoplasty

I was also told that this happened in one case of the liberation procedure (jugular vein) , and that a stent was inserted to make sure the hemorrhaging stopped.

Also from when I was researching the cutting balloon, it justified the 'controlled indents' of the cutting balloon by saying that all angio can create some small tearing. No biggie.

I'm not sure what you're basing that "No biggie" assessment on.

And this doesn't even start to address the issue of whether the procedure actually does something for MS.

Dr. Dake's paper that should've been published last fall (but wasn't) might have helped with that question. As it is we have the one paper by Zamboni.

Unless that paper included some neurological measures, or measures of MS symptoms, I don't see how it would have addressed the efficacy question.
As it is, we mainly have testimonials. It's been often stated here that people have to weigh the risks of the procedure versus the benefits. For some people who have been hit hard by MS, the choice is pretty easy. But for those trying to make an assessment, good data is really lacking, especially considering the complications that are coming to light.

patientx wrote:True, and I think that's one of the things that makes this site valuable. But I don't think it's a good idea for someone to believe he or she knows all the in and outs and possible complications based on this website. Unfortunately, I don't think a person can rely on an IR to tell him everything he needs to know about having angioplasty for MS, either.

We are in a tight place, aren't we. The IRs would be the right source of info, but they don't have it sorted yet. There is risk to going now and there is risk, with a neurodegenerative CNS disease, to waiting. I think we can all agree that the basis of the decision should not be a Youtube miracle video.

When you say someone had a jugular vein hemorrhage, do you happen to know which doctor they had? Were they on any prescriptions before the procedure, some docs do that with a script for Plavix, starting four days before? Was it with the regular or the supersized ballooning? I've read just a bit of trauma IR care, with a balloon already in the veins they should be able to inflate it above the rupture to stop the blood flow through it, but then I suppose it's a stent as you say or a vascular surgeon on hand to address it surgically.

As for the 'no biggie,' lol! We are accepting that there will be some damage to the vein when we go in for venoplasty, a procedure that works by stretching the vein. Small tearing is to be expected. But not massive tearing, rupture or hemorrhage. Your anecdotal report is the only one I've heard, Dr. Sinan has used aggressive ballooning without rupture, but it is definitely on the list of risks.

Cece wrote:When you say someone had a jugular vein hemorrhage, do you happen to know which doctor they had? Were they on any prescriptions before the procedure, some docs do that with a script for Plavix, starting four days before? Was it with the regular or the supersized ballooning?

I'd rather not say which doctor, and I don't know all the particulars. Maybe hemorrhage is the wrong word to use. There was a small in the vein, which started to bleed. It may have eventually healed on its own, but the doctor used a stent to be sure the bleeding stopped. It did not seem he considered this a major complication.

Cece wrote:I think we can all agree that the basis of the decision should not be a Youtube miracle video.

I agree with this, and I think most would agree - though I don't think everyone feels the same.