why are stents being used so often still?

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

why are stents being used so often still?

Postby MS_mama » Fri Oct 01, 2010 8:24 am

I'm hearing more and more about stent problems. Why are the CCSVI treating doctors continuing to be so cavalier about the use of stents when there are clearly serious concerns about thrombosis and long term patency? This to me is going to hurt the CCSVI research cause and hurt a lot of desperate patients who are being treated by these doctors.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby concerned » Fri Oct 01, 2010 9:00 am

Dr. Dake receives money from a company that manufactures stents, follow the money!!!
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Postby TMrox » Fri Oct 01, 2010 9:20 am

I think the number of treated patients has increased quite a bit in last couple of months. This might partly explain why we hear of new cases with complications.

My concern is that it seems some vascular doctors are stenting at the first try, without considering ballooning first. Zamboni's recommendation is to balloon first, if restenosed then balloon again.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby esta » Fri Oct 01, 2010 9:27 am

I have to say, what choice do we have, except to carry on going downhill!!!!!!!

I speak only for myself, but I was out of wait. I now have a stent, because my angioplasty failed. It may be OK when you're 30 and no compelling symptoms, but at 60 and a mess, I'll take a stent anytime.

We all take our chances, and, there's nowhere in Canada to be treated, so thank you Dr.Simka, he's only working with what he has available. and I believe he doesn't take stents lightly either and has studied types and sizes etc. at lemgth.

I guess now, I'll just pray for no thrombosis. I wonder what the rate of thrombosis is in arterial stenting?? Not that it matters I guess. I was thrilled for the CCSVI news in my lifetime, and the more its studied, of course the better it's going to get. This is whats available right now, and I can only pray my stented vein stays open. I'm so happy...I can't live in fear.
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Postby ozarkcanoer » Fri Oct 01, 2010 10:36 am

I have 2 stents. In my case there was no possibility that my right and left IJVs would remain open if the doctor only ballooned my veins, because of the location of the stenosis. I was the one who chose stents. And I am glad that I did. I am 64. I needed a better quality of life now. I was treated on August 17. So I chose stents. Today I feel pretty good (not perfect), and a whole lot better than last summer when I was suffering terribly from chronic fatigue and pain and depression.

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Postby akaheather » Fri Oct 01, 2010 12:18 pm

Dr Dake tried angioplasty, but my veins would not stay open. I am so thankful that stents were an option for me.
I am 35 with 3 small children. I probably could have waited to see if or when I would experience my next relapse, but I did not want to live that way anymore.

Heather
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Are stents used so often ?

Postby MarkW » Fri Oct 01, 2010 2:44 pm

Hello MS_mama,
You make a statement about stents being used 'so often'. I think you are mis-understanding the real situation from a few comments on this chatroom. My quick and dirty assessment is that less than 20 percent of pwMS who get therapy receive a stent. The answer is probably less than 10 percent because some Drs do not use stents at all and they are doing lots of balloon venoplasty.
I choose a surgeon who does not use stents but cleared restrictions in 4 veins. I expect that I will need more checks and maybe ballooning as research is progressing at a rapid pace.
For some people ballooning does not work on your all or some of their veins and they make a personal choice. The risks of stents are clear and well documented on the chatroom. However MS progression is a risk for most people with MS.

Kind regards,
MarkW
Last edited by MarkW on Sat Oct 02, 2010 5:07 am, edited 1 time in total.
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 CureIous » Fri Oct 01, 2010 3:41 pm

Just another tool of the trade. Bad news travels fast. The internet is far from a clearing house of information. People and organizations can pick and choose depending on their particular bias. All the more reason for people to do their homework, and make their own decision, based on knowledge, not internet board postings alone.

I don't recommend anything, I'm not a doctor, but you'll see plenty of "get angioplasty" posts all over the place. Says who? Who's being treated online? No one. How anyone on the internet can recommend things with authority to a specific individual/situation is beyond me. I don't care what Dr. is quoted, unless that particular Dr. is treating you specifically it's just more internet fluff. Pick and choose, all of it.

At that point, it's purely politics, plain and simple. Bias gravitates one to whatever supports them. I support whatever one decides for their own situation without attempting to steer in one particular direction or the other, based on telling half the story. The person who is sick gets the final say so on what direction they choose, nobody has stents forced into their veins, neither is anyone held hostage to make 3 trips to Bulgaria for a re-treat angioplasty. It's just a personal choice.
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 drsclafani » Fri Oct 01, 2010 9:00 pm

ozarkcanoer wrote:I have 2 stents. In my case there was no possibility that my right and left IJVs would remain open if the doctor only ballooned my veins, because of the location of the stenosis. I was the one who chose stents. And I am glad that I did. I am 64. I needed a better quality of life now. I was treated on August 17. So I chose stents. Today I feel pretty good (not perfect), and a whole lot better than last summer when I was suffering terribly from chronic fatigue and pain and depression.

ozarkcanoer


I have said this from the beginning. There is no evidence that stents are ncecessary. Dr Zamboni, who has so far written the only study on this subject, recommended against stents

Four groups come to mind that have treated more than 200 patients each. Three use stents, one of them treats about half the patients with stents

one of these groups does not use stents routinely and has never placed a stent. Yet their restenosis rate at three months is2%. TWO PERCENT.

they are doing something right and i look forward to their publications

I will not stent
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2% ?

Postby hwebb » Sat Oct 02, 2010 2:30 pm

2% amazing.

I assume this the Kuwaiti group you refer to. Please confirm.

Helen
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Postby Billmeik » Sun Oct 03, 2010 7:41 am

I was lying there on the operating table and they told me my venogram was showing a stenosis that closed three times after ballooning. I turned down the stent and every time I have an ms symptom (not to often these days) I wish i'd said yes.

The answer to the question of why stents is that angio doesnt work alone all the time.

My flow readings from the day before and the day after were only a little different. The angio didn't change much.
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