This Is MS Multiple Sclerosis Community: Knowledge & Support

and I bet that $5000 that Dr. Dake received from them really sways his opinion. I'll bet he's only making at a minimum $500,000 - that $5 grand would make a big difference!

That sort of stuff can't help but influence a person somewhat, no matter how good they are. It's not just the $5000, it's the "or more." Giving doctors pens and free lunches influences them! But the debate about stents will get settled through research one way or the other. My understanding too was that the randomized controlled trial that Dr. Dake has that is fully funded (!) and ready to begin in the New Year (?) does not have a stent component to it anymore. Venoplasty only, versus sham venoplasty, with a humanely short-term outcome of three months before the sham group gets the real thing.

I think it said at least $5000, not $5000 total, and that's from at least 3 companies I think.

I don't think that stent/nostent is major concern now. Two deaths after CCSVI liberation procedures are triggered by post procedures treatment drugs - anticoagulants and blood thinners. Postoperative follow-up is crucial in this case. Postoperative follow-up is well known and documented, so why is not performed?

Is it safe? Is it safe (Marathon man).

Misinformation. One was due to multiple blood thinners (according to the coroner), the other appears to be due to a combination of the use of a stent, the lack of follow-up care in Canada, and most directly according to his doctor in Costa Rica, the use of thrombolysis clot-busting agents that led to the internal bleeding. There is a difference between thrombolysis and the standard anticoagulants.

Ok, I'll corect myself:

I don't think that stent/nostent is major concern now. Two deaths after CCSVI liberation procedures are triggered by post procedures treatment drugs - thrombolysis clot-busting agents and multiple blood thinners.
Postoperative follow-up is crucial in this case. Postoperative follow-up is well known and documented, so why is not performed?

Is this ok for you now?? Do you suggest that Dr. Dake and Dr. Fallas did not follow procedure? They use 'multiple blood thinners' and 'thrombolysis clot-busting agents that led to the internal bleeding'.
Are they made a wrong decision/mistreatment?

I agree that we will not know what will happen with the current stents being used over the long term. I was treated by Dr H in Baltimore and I chose to have stents because I already knew from my BNAC imaging that my right IJV would need a stent, and because I was "desperate". My neuro tells me I am a risk taker. It is always risk vs possible reward and I believe I have the reward. I am now 3 months with no pain and fatigue much reduced. We are told to live in the moment... but I needed a moment to live in so I am enjoying the day. Will I regret this decision... don't ask me that question since I am just living for the day .

ozarkcanoer

It's not the issue here. Stents were in use in a realy short term. Stents were not the problems here. Prescribed postreatment drugs are.

How did a question about getting a stent end up with bashing a fine doctor who is fighting for us all??? Dr. Dake has been traveling around the world speaking about CCSVI and trying to begin his trial so that we can have the proof we need to move forward. He has risked his reputation and possibly his job to help us. I'm sure his life would be much easier if he just went back to his fabulous job at Stanford and forgot all about us, but he doesn't.
I swear, the fight here to improve the health for people with MS has been lost with all of this negativity.

Do your research on stents, talk to doctors you trust, ask questions of those who have been through it, and then do what feels right for you. I personally wouldn't want to deal with the fear of restenosis every time I felt crappy. I know my stent is holding my veins wide open. It is important to have a good doctor who knows how to prevent clots with the appropriate amounts of blood thinners. I was on Coumadin, Plavix and Aspirin. I went to my GP and had my INR monitored so that the right level of thinning was achieved. I went back for a follow-up at 2 months and a year to make sure the stents were functioning properly.
Best of luck to you.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Restenosis is still a possibility for people with stents. Elastic recoil is less likely but there is still in-stent restenosis as well as thrombosis. It is misleading if anyone believes that a stent will eliminate the possibility of restenosis.

I wasn't trying to mislead.
The reason I spoke about the thinning regimen is to make the point that you need to do some work to prevent clots. It also seems less likely to restenose with a stent. Most who have had to have angio after stents have had some endothelial growth through the stent, but I haven't heard of a complete block. Maybe you have??
Today my GP told me that once the endothelial layer grows over the stent and it has integrated into the vein the likelihood of any issue is unlikely. This is the same info Dr. Dake gave me. He also said the stents are so flexible he doesn't feel the fear of fracture is too concerning. Dr. Dake also told me this. And ...this is the doctor who tried to talk me out of pursuing this and still is skeptical. His only concern was in the 2 months following stent placement.
I also said "MY" stent was holding the vein wide open. I am just relating my story.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

With the blood-thinning regimen, what you and the other Dake pioneers received is not what people are getting now. So many are getting Plavix only.

Yes, I have read more than one outcome here where people have complete blocks. There is a fellow TIMS member here who has three stents, each in separate veins, all completely blocked.

Thank you for relating your story, you are among the group that is the longest out from treatment, we need those stories. I did not mean that your story was directly misleading, only that when I joined TIMS the thought was that stents were going to be the answer to restenosis and while they seem to solve the problem of elastic recoil, the worst of the clotting restenosis outcomes have all involved stents and medical tourism.

It is interesting about the blood thinners... that every IR seems to prescribe something different. My IR, Dr H from Baltimore, prescribed plavix for 3 months and then an adult aspirin for the rest of my life. He also told me (unless my memory is faulty) that "they" don't know whether these blood thinners are even necessary but they prescribe them for cautionary measures. It seems to me that they don't know a lot, and without people getting the procedures as "pioneers" they will never learn. Thank goodness for the pioneers !!!! Go Rhonda Go !!!!!!

ozarkcanoer

"What To Do if Stents Needed?" - was the original question...

I'm not sure that question can be answered here - there are too many variables; level of disability, rate of progression, spiritual beliefs, practitioner knowledge and skills level, etc. For someone dx'd 2 years ago, with 1 mild relapse and an EDSS of 1, their answer might be completely different from say, Barb Farrell. Someone Dx'd last year with an EDSS of 6.5 will have another answer. One should do as much research as possible before undertaking venoplasty - with or without stents. We know of two terminal outcomes in the last year that were caused by post-procedure medications - not stents. Radek had a migration that could have been terminal, but wasn't. I don't know his view.

I believe that it was Ashton Embrie who wrote today that there have been ~12,000 procedures to date (really?). I am sure that there has been every flavour of successful outcomes, and failures. The three known critical failures are very significant to those affected, but statistically... I have the impression that about 40% receive stents. There are probably as many risks to aggressive angioplasty (ruptured veins, etc.) as there are to stents. A Polish clinic reported a ruptured, or torn IJV in one of their two thousands of procedures (not fatal), so statistically, it could be argued that simple angioplasty is as dangerous as stenting.

During my first procedure, I had no idea what to expect for myself, and though I did not want a stent, I was worried about having to make the choice on the table. I was glad that it did not come up. For my second round, I was more resolute before-hand, and declined the recommended stent. I had no benefit the second time, and I spent the next week wondering what foolishness was in my decision. I still had a "scare" over the last week because of a possible clot, but my jugs are patent on DUS, and I am having a really nice relapse. I don't regret not taking the stent, but a part of me wonders how I would feel if I had. I'm not afraid of stents - magoo, and cureIous, and ozark and esta, and... sure are happy with theirs. Simple angioplasty makes some people worse. I am afraid of pharmaceuticals - even aspirin. I still have "MS". Big time.

"What To Do if Stents Needed?" is a question that only you can answer, on the advice of a skilled surgeon. Good luck, it is a difficult choice.

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My name is not really Johnson. MSed up since 1993

Nice summary Johnson!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.