What To Do if Stents Needed?

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

What To Do if Stents Needed?

Postby thornyrose76 » Fri Nov 19, 2010 1:17 pm

What should one do if Dr. believes you need a stent? I'm in Canada and scheduled to go to Albany-Siskin in the spring. What if he says I need a stent? Im a little afraid given that young man's death in Costa Rica, bc if you've got a stent in your jugs chances are clots will form correct? More than likely, but if I decline tohave stents, I could still get clots, and the other worry is any improvements gain, if any, if the veins close up the symptoms could return...Someone ease my worry mind...and good luck getting help from the medical est in Canada if I do develop problems... :cry:
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Advertisement

Postby Blaze » Fri Nov 19, 2010 1:41 pm

It's a really tough decision. I personally would not agree to a stent. Dr. Zamboni recommends against them. Dr. Scalafani recommends against them. IR Dr. Edgar Underwood recommended against them on CCSVI Locator website.

That, combined with information I've read here and elsewhere about problems with stents, is enough for me.

On the other hand, many people have reported they are very satisfied with their stents and consider them safe. It's a tough choice and one only you can make--in consultation with Dr. Siskin.
User avatar
Blaze
Family Elder
 
Posts: 405
Joined: Sun Jun 27, 2010 2:00 pm

Postby garyak » Fri Nov 19, 2010 1:59 pm

I am scheduled for my second procedure in 2 wks in san diego and after a long decision making process I have decided to decline any stents for now.
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 2:00 pm
Location: grande prairie , alberta,canada

Postby Blaze » Fri Nov 19, 2010 2:05 pm

garyak wrote:I am scheduled for my second procedure in 2 wks in san diego


Gary: Why are you having a second procedure? Your initial reports were so positive. Has that changed? Have you restenosed?
User avatar
Blaze
Family Elder
 
Posts: 405
Joined: Sun Jun 27, 2010 2:00 pm

Postby Cece » Fri Nov 19, 2010 2:08 pm

garyak wrote:I am scheduled for my second procedure in 2 wks in san diego and after a long decision making process I have decided to decline any stents for now.

You have my support in that choice, you can always get stents if needed at some point in the future but you can't un-get them if they're put in now and cause problems. CCSVI is in its infancy. A year ago, the original group was discussing what order all the stents should go in: low ones first, then high ones. It was just the assumption that there would be stents and lots of them, no offense intended. Things have changed since then and they keep changing.

The big thing is that you already know you respond to the procedure, so best wishes and lots of confidence that you'll respond this second time around. Will your doctor be doing anything different in his treatment for this second attempt? Perhaps it was underdilated the first time?
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Postby marcstck » Fri Nov 19, 2010 4:49 pm

Keep in mind, in addition to concerns about thrombosis and stenosis in of the veins above and below the stents, the question of long-term patency is a complete unknown.

In the few patient groups that have received venous stents in the past (some cancer patients and end-stage renal disease patients) the patency of the stents was less than 50% after one year. That means half of the stents failed within one year of implantation.

Here's some data on renal disease patients:

http://cjasn.asnjournals.org/cgi/content/full/4/5/996

Now, you can't necessarily compare the experiences of one patient population to another, but such statistics do warrant cause for concern. The stents currently being used were generally designed for use in thoracic arteries, where they are not subjected to the twisting, bending, and torque that they undergo when placed in the extremely flexible human neck.

Questions about stem patency won't be answered for several years, as time goes on and assessment can be made of those patients who have stents in their jugulars.

Given all that we now know, I would personally not submit to a stenting procedure. Of course, each patient must make their own assessment…
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 3:00 pm

Postby LisaAnn » Fri Nov 19, 2010 4:54 pm

I personally, don't believe we Canadians should be getting stents out of the country. I think it is too risky with the lack of follow-up.

Look at how far we have come in one year! The issue of stents will probably be much clearer in another year.

Whether or not the radiologists doing your procedure, uses stents, you can still decline them. It's a personal decision.

Regardless, of how we may feel about the Canadian health care system, we really do have to take into consideration the uncertainty and fear our personal physicians must be feeling. Sure they are responsible for us but to what extent? I don't envy some of my doctors! I can be like a bull in china shop when I don't get my way!

Sorry, what was I talking about?

Oh yeah, stents. I say no, not now.
Lisa
User avatar
LisaAnn
Getting to Know You...
 
Posts: 19
Joined: Thu Jan 14, 2010 3:00 pm
Location: Hamilton Ontario Canada

Postby jay123 » Mon Nov 22, 2010 6:00 pm

If Dr. Siskin recommends it you trust him and you go for it! He has placed stents in many patients before CCSVI and knows the risks. Also Dr. Dake's patients are all doing great (as far as the stents) with many having them placed for over a year.
By taking the proper meds after the procedure everything should go well, and if it's a choice of opening a vein with a small risk but hopefully seeing MS improvement or leaving the closed vein and not taking a chance on a complication or a chance of getting better..... I guess you know which way I went.

I do believe you should do angio as a first step - but if it fails then IMHO this crisis over stents is overrated. If I see a chance for a better life vs. the very low odds of a stent problem, to me the choice is a no brainer.
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Postby concerned » Mon Nov 22, 2010 9:02 pm

Is Dr. Siskin involved with any company dealing in stent manufacture? I heard that the stent market is set to go kaput because of a new drug coming out. I'd be worried about stent companies trying to expand their markets. I know Dr. Dake is involved with a stent company...
concerned
 

Postby BadCopy » Tue Nov 23, 2010 5:15 am

concerned wrote:Is Dr. Siskin involved with any company dealing in stent manufacture? I heard that the stent market is set to go kaput because of a new drug coming out. I'd be worried about stent companies trying to expand their markets. I know Dr. Dake is involved with a stent company...


I question any time someone says "I heard this or that" no matter what side of the fence they are on if they have absolutely no information to support the statement.

I have restenosed and I don't think I would want a stent. But I am a mildly effected person. The decision process is different for all.
User avatar
BadCopy
Family Elder
 
Posts: 141
Joined: Sun May 23, 2010 2:00 pm
Location: 10,000 Lakes

Postby jay123 » Tue Nov 23, 2010 8:24 am

and thats a ridiculous comment about stent companies. Don't you think a surgeon makes enough just doing procedures? To think that they would put one in to get a kickback is insulting.
My experience was that Dr. Siskin put absolutely no pressure on having a stent, wuith me it was a question do you want to be aggressive or not.

But I did hear the hosptial gets a kickback from the hotel, and the hotel gets a kickback from the doorman, and the doorman gets a kickback from the Tim Hortons... maybe it's all a big scam!
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Postby concerned » Tue Nov 23, 2010 9:05 am

<shortened url>


Follow the money people.

Consulting: Dr. Dake receives fees of $5,000 or more per year as a paid consultant or speaker for the following companies:

Abbott Vascular
W.L.Gore and Associates
concerned
 

Postby concerned » Tue Nov 23, 2010 9:36 am

The trial was sponsored by Cook Medical.

Dake disclosed that his institution received research support from Cook Medical. He disclosed research grants from W.L. Gore and Cook Medical, consulting fees and honoraria from W.L. Gore and Abbott Vascular. He also disclosed equity interests or stock options in NovoStent, Vatrix, Amaranth, CVRx, Endoluminal Sciences, REVA Medical, TriVascular, and Cytograft Tissue Engineering. He serves as an officer or director for VIVA Physicians Group.


http://www.medpagetoday.com/MeetingCoverage/TCT/22405


There's certainly a conflict of interest there, I think.
concerned
 

Postby CCSVIhusband » Tue Nov 23, 2010 9:37 am

concerned wrote:http://blogs.forbes.com/robertlangreth/2010/11/17/merck-drug-could-eliminate-the-stent-business/?boxes=businesschannelsections


Follow the money people.

Consulting: Dr. Dake receives fees of $5,000 or more per year as a paid consultant or speaker for the following companies:

Abbott Vascular
W.L.Gore and Associates


^ so now it's ok to follow the money? But these neurologists have nothing to hide when it comes to being CCSVI? :roll:

...

It's OK to pick and choose now everyone ... it really is.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby concerned » Tue Nov 23, 2010 9:49 am

Ummmm.... I've never said neuros involved with drug companies have nothing to hide. As I've pointed out many times before, there are neuros who work with Biogen and Teva on Zamboni's team. I don't like any big industries at all, and I've said that many times before.


Maybe you should keep your personal attacks to private messages.
concerned
 

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service