MS patients warn of complications after CCSVI treatment

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

MS patients warn of complications after CCSVI treatment

Postby MSUK » Mon Nov 15, 2010 2:48 am

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Three multiple sclerosis patients who went outside of Canada for the "liberation treatment" are warning other patients to make sure they have follow-up care in case they return with complications.

One of them is longtime MS patient Jan Wexler, who went to a Bulgarian medical clinic in June. Doctors there performed an angioplasty on one of her jugular veins in her neck and the azygos vein in her chest, using a catheter-guided balloon to open up veins in the neck, in an effort to improve drainage from the brain. ... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954
MS-UK - http://www.ms-uk.org/
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Postby CureIous » Mon Nov 15, 2010 2:40 pm

As usual, the media wastes no expense, nor spares no effort to get us the skinny on the bad stuff ASAP, with blaring headlines.

While there are certainly lessons to be learned, and advice to be heeded, you can be sure there will be many thousands that will say, "oh yeah, I heard about that, wasn't there 3 people who came back home and said it was disastrous?".

The warnings are in place already, so it's kind of redundant to "sound the alarm" as if it was a heretofore unknown possibility.

All that aside, I think it's good to get people to think twice and/or wait before "rushing off" (whatever that means, 1 month, 1 year? What's rushing?) and to stay local.

How come the media never printed a story about the recommendation to stay local? Why does the media only care about the bad stuff primarily?

Oh yeah, thats right, if it bleeds, it leads. Please people do not forget that ever, the media views you as a means to an end, nothing else, so be careful what you ask for....
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 marcstck » Mon Nov 15, 2010 3:14 pm

Well, given that this story was reported by Avis Favaro, the reporter who originally opened the CCSVI floodgates with her report on Canadian television last November, and who has contributed to countless pro-CCSVI pieces in the months following, I don't think the usual and predictable knee-jerk "evil media" reaction applies here.

Here's a link where you can watch the story as it aired on Canadian TV:

http://www.ctv.ca/CTVNews/TopStories/20 ... ts-101113/

The fact is that a growing number of patients who have received stents in Bulgaria and Poland are experiencing problems (I am receiving more and more e-mails about this), and there is little or no follow up done after these patients depart from foreign clinics, some of which have become liberation mills (I've heard some very disturbing reports out of Costa Rica and Mexico). Therefore, we actually have no idea what even the short-term outcomes of the majority of these patients are, which is truly a shame, because that data is desperately needed.
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Postby cheerleader » Mon Nov 15, 2010 3:44 pm

Marc's right....the Canadian situation spawned lots of tourism (check out the "Free CCSVI informational meeting" ad on the general thread), This was the predictable outcome of the Canadian health ministry's refusal to test and treat for central venous occlusion. In the US, our IRs have been able to test and treat and in most cases patients have been able to receive good care and follow-up.

When I started the CCSVI in MS Facebook page back in August '09--the first post was about how to "Go Local" --to take research to local universities and local doctors. It was really for people in the US, and we had about 60 followers. Never foresaw what was going to happen in Canada....and now with 18,000 followers, I keep banging the "Go Local" drum...and get a lot of anger and flack from people who can't go local. I hope and pray this new CTV piece keeps people close to home--and I'm glad it was published.

Angioplasty is often not a one time deal...whether for heart patients of people treated for central venous stenosis, you might need further procedures. And EVERYONE needs follow up for INR/PT times....even with just simple ballooning.
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Postby CureIous » Mon Nov 15, 2010 3:46 pm

[quote="CureIous"]
The warnings are in place already, so it's kind of redundant to "sound the alarm" as if it was a heretofore unknown possibility.

All that aside, I think it's good to get people to think twice and/or wait before "rushing off" (whatever that means, 1 month, 1 year? What's rushing?) and to stay local.
quote]
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 » Mon Nov 15, 2010 4:08 pm

I received an email from Angioplastyforall just now that said:

Hi Everyone ::



I just spoke to CBC and they will be airing a story tonight about the necessity of follow up care for us. They have a Doctor who has agreed to speak to the fact that in Canada they have their hands tied as to follow up. I believe CBC to be genuinely interested in educating the public on this matter. I personally don't mind speaking about follow up care as long as it stays positive and helps our cause. I shared with CBC that some people are very concerned about any negative reporting ! I explained to Sofia that 4000 to 5000 people with MS have had major improvements, but a small group are having some difficulty. This is the reality and I hope we can get proper follow up care for all right here in Canada.

The solution to this whole mess is to Get Proper Care right here in Canada. Thank you for the many responses. I wish everyone well !!



Tim Donovan


My own advice is, don't leave home without an appointment, local if possible, for follow-up care. If 50% restenose do you want to flip that coin without a hand to catch it? Not even to consider thrombosis.
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Postby blossom » Mon Nov 15, 2010 4:18 pm

i agree with mark. the news reporter was one of the first reporting the good news and now she is following up.

jan and the others are telling their experience. these stories have to be told too. hopefully, there will be solutions.

i feel the ccsvi treatment and research is not going away because of the ones like jan and even myself. and, we don't want it to go away. we all want it to work for us. but, unfortunatly, there is a lot of fine tuneing needed.

one thing for sure, ccsvi has gotten ms looked at differently. and, eventually soon i hope, all the rose colored glasses come off and we'll get a real fix and not a bandaid.
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Postby jimmylegs » Mon Nov 15, 2010 4:26 pm

i agree with marc too.
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Postby CureIous » Mon Nov 15, 2010 9:02 pm

Follow ups are great, I'm sure Avis or whoever is doing whatever story have the best intentions in mind. No need to come to her aid, she's doing just fine. Anyone that's been on this site for more than a year like myself, is well aware of Avis's contribution to the CCSVI story.

But, along the lines of "be careful what you ask for" or insist on, and keeping in mind I fully understand why Canadians specifically want this particular story at the fore (to bring political pressure to bear for treatment at home, showing the risks patients are taking due to inaction on the governments part), there's potential here of forcing the government to take a stance. The stance they take may not be to one's liking either. Whereas before, the follow up care *may* have had a chance to fly under the radar due to extenuating and emergency circumstances, forcing politicians to make political decisions based on media reports may have the unfortunate blowback of throwing the proverbial baby out with the bathwater.

I'm really really hoping it doesn't come to this, but the ball may have already started rolling:

"It's a real struggle," said Machan, who has turned to the BC College of Physicians and Surgeons for advice. "We're right now seeking clarification."


"Physicians are not, however, obliged to repeat or redo experimental procedures which were performed outside of ethically approved research protocols."

http://www.cbc.ca/health/story/2010/11/ ... z15PXjeQOm

I'm really hoping they aren't forced into casting the above into concrete.

There's been thousands treated overseas, plenty of "bad stent stories" to write and broadcast about. It's November 2010. There's nothing that's just come to light, it's been there all along. It's just that now, with thousands treated, there are more to report. The stories should grow, along with the treated patient population.

From CTV:
"Patients who run into problems are left to seek medical care at home, but some are reporting that Canadian doctors won't treat their "liberation" treatment-related complications. "

"I did not get any help. I specifically did ask one doctor that I see if I could get a referral to a local vascular surgeon just to have someone to talk to about the symptoms I was experiencing. I was given the response. ‘No.' I would not get a referral. "Because I have MS, they are not entitled to be treating me in terms of vascular disease," she said.

While Quebec appears to be doing the right thing for the time being, for those in the rest of the provinces, this is a very dangerous game of chicken being played with the government.

I'd also like to point out there's one verified stent clot, one "presumed based on patient description", and one death with no further info.

While no patient's negative experience should be ignored nor detracted from, I'd like to point out what's NOT being stated in this story, principally that just avoiding stents is not going to guarantee any measure of success, it will just ensure 100% you will not have any stent complications, creating the false impression that "without stents, the CCSVI world will do so much better".

It may, it may not, err on the side of caution. Just be advised that stent avoidance is not going to ensure one is clot free, that there are other considerations that are paramount besides just going "no stents".

Avis and CTV have had all year to report on complications and to sound the alarm, specifically about treating overseas, more so about stents. This problem didn't suddenly arise this week, it's been an ongoing saga. That may have been a better story in March or April when the Liberation War aired. Think of what a war is. It's two sides pitted against each other. Forcing one to choose sides may not be the best strategy right now as it pertains to the government.

For the record, if I were Canadian I would be just as activist right now as anyone else, but I'm not.

However, I consider anyone's personal health a high-stakes game. There's entire families at stake here. I question whether any corporation of any stripe such as news media, is what I would want as my teammate at this point. These are divergent interests, not mutually exclusive, but exclusive enough to warrant caution.

After all, we've already heard 3 different stories just on this website of "that's not what I stated" sub par reporting. Hence my warning, as stated many months ago, and reiterated here. This is no time for the "I told you so" no-stents game. These warnings of overseas travel should have been echoed very strongly by the Canadian media many many months ago, not tacked on to the bottom or as a mere quote of "caution to wait until more studies are in".


Perhaps CTV would have been better to interview Cheerleader last year, so she could look into the camera, and say "go local, and here's why".

I'm also keen to note that no mention is made in the story of any thinner regime, or if was even recommended, or what it may have been, or if it even existed, and why that is a very important consideration for patients to ask about before booking the plane. THAT would have been something I'd like to have seen in the March report, why couldn't we get any of these Dr.s to say, "I know not everyone is going to heed the advice to go local, if you do go, we implore you to ensure at a minimum that you have follow up care in place at whatever cost, and some kind of blood thinner or anti-coagulant regime to mitigate the risks of clotting". Something along those lines.
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 MrSuccess » Mon Nov 15, 2010 10:23 pm

I say .... let's put ALL the cards on the table . :idea:

one poster ... Rici ..... - a guy all were worried about - has just reported his problem vein ... is no longer a concern . Without medical intervention. go figure.

of interest & concern , is the most recent ECTRIM report of Dr. Simka.

this procedure can have complications ..... but so do most if not all other medical procedures. so bear that in mind.

I agree 100 % with Ringleader. Stay local . You WILL need good followup care.

at this point ...... we are in drastic need of a sound Clinical Trial.

There needs to be an established test & treat procedure put in place ASAP.

It can't happen too soon . There is cause for worry . We cannot have a free-for-all in CCSVI treatment .



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Postby Cece » Mon Nov 15, 2010 10:30 pm

CureIous wrote:While no patient's negative experience should be ignored nor detracted from, I'd like to point out what's NOT being stated in this story, principally that just avoiding stents is not going to guarantee any measure of success, it will just ensure 100% you will not have any stent complications, creating the false impression that "without stents, the CCSVI world will do so much better".

YES we need to emphasize this. There have been people with clot complications after angio only and this catches them by surprise because the thought is that it's stents that have complications. But angio only can have complications too.
MrSuccess wrote:one poster ... Rici ..... - a guy all were worried about - has just reported his problem vein ... is no longer a concern . Without medical intervention. go figure.

I hope to understand this situation someday. Was it a valve that was angioplastied that then popped back out (elastic recoil)?
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Postby 1eye » Mon Nov 15, 2010 10:51 pm

CureIous wrote:"It's a real struggle," said Machan, who has turned to the BC College of Physicians and Surgeons for advice. "We're right now seeking clarification."

"Physicians are not, however, obliged to repeat or redo experimental procedures which were performed outside of ethically approved research protocols."

"Because I have MS, they are not entitled to be treating me in terms of vascular disease," she said.


Sorry folks, I guess I have been posting a lot today, though it started as humour. This ain't funny. This goes directly to the Hippocratic Oath, and since when were physicians concerned about their "obligations" to practice medicine? Since when did they need ethical approval to save a life? Since when did they have to be entitled to treat someone? Since when, did they need a life-threatening situation, to give medical assistance? Since when did they have to approve of how people got sick? Since when do they need advice from any College, or to know the right insurance codes, to treat thrombosis? It sounds to me as if doctors are shying away from patients because they don't want to get involved, don't want to rock the boat, don't want to stand up to the disapproval of the neurology association.

Does this association insist on collective acceptance and approval of the science behind saving a life? Will they do anything they can to prevent treatment, if they do not approve of the behaviour that made it necessary?

To avoid any disagreement with them, will surgeons pass the buck to Colleges, Colleges pass the buck to politicians, politicians pass the buck to the MS Society, and will we all do anything to avoid any possible disagreement, conveniently letting dying people die and getting on with our less controversial bureaucrat-approved doctoring?
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Postby Cece » Mon Nov 15, 2010 11:00 pm

1eye wrote:
CureIous wrote:"It's a real struggle," said Machan, who has turned to the BC College of Physicians and Surgeons for advice. "We're right now seeking clarification."

"Physicians are not, however, obliged to repeat or redo experimental procedures which were performed outside of ethically approved research protocols."

"Because I have MS, they are not entitled to be treating me in terms of vascular disease," she said.


Sorry folks, I guess I have been posting a lot today, though it started as humour. This ain't funny.

That is quite a quote. It's a repeat or redo if the jugular returns to its normal shape, ok I can see that, but it's an emergency care situation if there is clotting involved.
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Postby Blaze » Tue Nov 16, 2010 8:02 am

Here's a link to another story from CBC about problems Canadians who have complications are facing.

http://www.cbc.ca/health/story/2010/11/ ... tions.html

I think it's critically important that those of us with MS and the public be aware of these problems. The public glare may force provincial Colleges of Physicians and Surgeons to issue a directive that complications should be treated--as Quebec did last week.

The real issue, of course, is treatment should be available in Canada. Angioplasty for All (www.angioplastyforall.com), helped with the contacts for the CBC story. They continue efforts on a Charter Challenge on behalf of all Canadians with MS.
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Postby cheerleader » Tue Nov 16, 2010 8:38 am

CureIous wrote:
Perhaps CTV would have been better to interview Cheerleader last year, so she could look into the camera, and say "go local, and here's why".


I pretty much did say that, Mark. I talked about why I looked to Californian universities for Jeff's testing and treatment. Dr. Zamboni told me that he could test Jeff, but he could not treat him due to his ethics board's parameters. So, I got busy sending the research to our incredible university medical depts. The one that really sparked to the research was Stanford. USC and UCLA were also interested (at that time.) And the one person I recommended to see Dr. Simka online was Erika...because he was relatively local to her, and I'd met him in Bologna. Rici was local to him, as well.

But Jeff and I weren't the focus of the story on CTV last year. And most of our interviews were on the editing room floor. The focus was Dr. Zamboni's discovery (as it should have been). And when Canadians found out they couldn't get treated at home, a medical tourism industry formed around CCSVI. I, for one, NEVER saw that coming. Maybe CTV should have had an intimation, maybe not. But they are cautioning Canadians now. I do not understand how patients can be turned away by their doctors for aftercare.

The difference between going to Stanford University and a clinic in Cabo is huge. The difference between participating in a clinical trial and spending your life's savings on a procedure that is not one-time for many is huge. I thought this was self-evident. But it's not....
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