NO JUGULAR STENTS

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

NO JUGULAR STENTS

Postby dania » Tue Aug 30, 2011 11:05 am

No jugular stents
by Mike Arata on Tuesday, August 30, 2011 at 10:50am

We all need to understand that as a physician our first priority is to do no harm. It is acceptable to offer treatments without randomized trials when empirical evidence suggests patients benefit. When empirical evidence however suggests harm we should not offer that treatment until good science has determined if it helps or harms. My motivation to caution all CCSVI'ers about jugular stents has been called into question. I have dedicated my career to you all. It is unfortunate that personal shots are taken in public but such is life in this realm. I will not be deterred. My goal is not to knock other physicians. At no point did I say anything about a physician who puts them in. In fact I admit I have! My goal is to spare as many people as possible from HARM. If what I am about to say hurts your feelings, I am sorry but DO NOT HAVE A JUGULAR STENT!
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Postby mtf » Tue Aug 30, 2011 11:29 am

And when we have stents and things aren't going well? What to do?
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Postby 1eye » Tue Aug 30, 2011 11:49 am

You are quite right in refraining from using jugular stents yourself, if you believe that harm is more likely than benefit. The assessment of the risk should be done with fully informed and clear-headed consultation between doctor and patient. I don't object at all to you telling anyone your opinion on jugular stents. Some of those in this forum have them, and have done well with them. You can advise, but the decision is up to the individual. Please, unless you have clear evidence of unacceptable risk, don't try to predetermine what is offered to patients. That is what is happening in my country, where if you do balloon angioplasty for an "MS" patient, you may lose your license or insurance, and I believe deaths have been the result.

I have three stents in arteries in my chest, and I expect them to remain patent a long while yet. They advertise risky drugs on my TV all the time, but I am not taking them, or "asking my doctor" for them, and there are some she would never prescribe if I did. She knows me and keeps records on my health, including tests and treatment for "MS", my heart, and CCSVI. The decision about what goes in my mouth, or inside me, is mine.

As long as you are just advising, it's no skin off my nose. I and others can post here too.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby MrSuccess » Tue Aug 30, 2011 12:36 pm

true enough .... make up your mind ..... make your own decision .

but please remember ...... if you are here at TIMS and reading all the CCSVI posts ....... it is all a result of the work and discovery of Dr. Zamboni .

Until I see-read differently ..... I accept Dr.Zamboni's position on stenting as ...... NO ....... not yet.

good enough for me ........advice ......... right from the TOP.



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Postby CureIous » Tue Aug 30, 2011 1:29 pm

I wish these endless stent warnings that pop up every week or so on here would come with some hard numbers. Been going on nearly 2 years now.

And side by side with those numbers I'd like to also see how many veins are now untreatable due to excessive ballooning. Does Dr. Arata caution against repeated procedures too or just stents?

Yes yes, it's a bit more complicated than generalized blanket statements now isn't it?

No really I'd love some numbers. I know we don't have any so it's a moot point. Want the whole story told.
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 1eye » Tue Aug 30, 2011 1:33 pm

Heeding Dr. Zamboni's advice is your decision. That advice, for good or ill, may have affected treatments where stents were recommended and offered. The final decision belongs to the person who has to live with the stents. I will not try to second-guess a treating physician. If Dr. Zamboni's word were universally heeded, a lot of people would not have come back with stents from clinics abroad. I will not second-guess Dr. Dake either, or Dr. Siskin, or anybody who has used stents in jugulars.

Dr. Zamboni also said people should only be treated in a trial. If that were adhered to everywhere, I don't think this procedure would be on anyone's map. I would not have been able to get it more than 1 year ago, and a lot of the things I have posted here would not have been able to be written. I think it is a wonderful thing that people are free to make their own decision.

Yesterday I took a picture of a record label of a symphonic recording made during WWII, by the Budapest String Quartet. My father collected records made by musicians from countries that were at war and under occupation. I don't think many of the US-bashers around these days remember WWII, but I for one am very glad they prevailed and it remains a relatively free country on that side of the fence. Dr. Zamboni is a great man, but he does not determine what procedures get performed in New York state.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby cheerleader » Tue Aug 30, 2011 2:42 pm

I know Mark, Jeff, and others have done really well with their stents...but some from the Stanford 39 were not as fortunate. Jeff's doctor had used venous stents in vena cava syndrome, jugular veins, and the dural sinus. He designed stents, too--and explained to us the advantages...so we went with his opinion. Since Jeff was the first in the US, his doctor had more venous experience, even if it wasn't CCSVI specific. It makes me more than a bit nervous to see doctors with Facebook pages making statements like this on them. Just odd....IMO.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Tue Aug 30, 2011 4:20 pm

nothing odd about it . there are enough disturbing "stents gone wrong"
reports posted here on TIMS.

Do I have to remind you of your reaction to the migrating stent of R ?

Just stop for a minute ...... and think it through. :idea:

IF you have a successful stent placed ....... I am happy for you .

I agree with Dr.Zamboni and Dr. Zivadov ....... this procedure would be

best served ......... in a Clinical Trial .

That path is agonizingly slower ........ but the best way to proceed.

As the saying goes : " Nothing to stop us but fear and good judgement"



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Postby pklittle » Tue Aug 30, 2011 5:05 pm

MrSuccess - have you been treated? was it a success?
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Postby MrSuccess » Tue Aug 30, 2011 10:05 pm

pk- I like nothing better than to read reports of successful and functioning
CCSVI treatments . Including those involving stent placement.

Any and all victory's over MS ...... make for good reading.

Dr.Zamboni expressed a valid concern , upon giving us his research results. And that was an uncontrolled procedure for solving the problem of CCSVI. He specifically made mention of the problem that stenting might cause.

And in some cases ....... it has.

No need to name names .... they have posted their situation's here on TIMS. It would be foolish to disregard their experiences. I place great value on their CCSVI experiences.

That's fair comment , right ?

On the plus side ........ we now have multiple CCSVI experts working this thing out . And I am confident they will produce a safe and effective method of treating CCSVI ...... sooner than later.

Having pwMS running here and there ..... getting so-called CCSVI treatment , then having the horrible results thrown in our faces by the anti-ccsvi neurology world ......... only slows the good work progress being made by those we trust.

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Postby mccandless58 » Thu Sep 01, 2011 2:44 pm

There is no stent anywhere on the earth that was designed to be inserted into a vein.

Doing so can result in this. . . .

http://www.cbc.ca/news/health/story/201 ... ostic.html
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Postby drsclafani » Fri Sep 02, 2011 8:39 pm

mccandless58 wrote:There is no stent anywhere on the earth that was designed to be inserted into a vein.

Doing so can result in this. . . .

http://www.cbc.ca/news/health/story/201 ... ostic.html


actually, most stents were originally designed to work in bile ducts. yet they work in arteries and veins and have done great work of salvaging limbs, maintaining patency of dialysis grafts, and many more life preserving ahd prolonging results.

Lets n ot damn stents as being improvident, rather than imprudently used.

So there are clear indications for stenting (assuming you are not willing to acdcept stagus quo.

i am no fan of unnecessary stents, but there are reasons to use them and we need to be more inteligent, open minded, and thoughtful about the proper indications , exclusion characteristics, technique of deployment, propar management of followup care , and reduction or avoidance of risks associated.
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Postby Robnl » Sat Sep 03, 2011 1:51 am

I got a stent in my left jug; 3 cm and it's right behind the collarbone.
It's ok for 18 months noiw, i think it's very important where the stent is placed in the jug and how large te stent is.

I got a Polish Neptune stent, wit large holes. The doc in Belgium told me he would never use such a stent in arteries, so i suppose this stent is more suited for veins...(but i'm no doctor :P )
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Postby drsclafani » Sat Sep 03, 2011 6:16 am

Robnl wrote:I got a stent in my left jug; 3 cm and it's right behind the collarbone.
It's ok for 18 months noiw, i think it's very important where the stent is placed in the jug and how large te stent is.

I got a Polish Neptune stent, wit large holes. The doc in Belgium told me he would never use such a stent in arteries, so i suppose this stent is more suited for veins...(but i'm no doctor :P )


Let's not come away with the idea that the larger the stent the better. Stents that are too large will stimulate intima hyperplasia
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Postby drsclafani » Sat Sep 03, 2011 6:23 am

Robnl wrote:I got a Polish Neptune stent, wit large holes. The doc in Belgium told me he would never use such a stent in arteries, so i suppose this stent is more suited for veins...(but i'm no doctor :P )


I do not know this stent, so won't make judgment, but it appears that this stent was made for the bile ducts.

but just because a particular stent would not be used in an artery, DOES NOT mean that it is suitable for veins.
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