The Great CCSVI Scandal of 2010

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

Postby Johnson » Mon Apr 26, 2010 2:13 pm

JoyIsMyStrength wrote:Thanks so much, Flash, very interesting if a bit hard to understand (lost in translation?). I think they're saying they have two groups, studying one group for 6 months with procedure, another without, but both groups eventually get the procedure... it's just a delay for one group. If so that sounds much more humane to me. :-)


That is my understanding of the basic structure for the proposed UBC/Saskatoon study, too. With the codicil that the control group will receive treatment if the treated group shows benefit - on compassionate grounds. The compassionate grounds is a key phrase, because if they are treating the controls on that basis, they must treat everyone in Canada on that basis. They can still continue their studies, but it will be done. X 80,000 Canadians with "MS" (henceforth to be known as Medical Swindle).
My name is not really Johnson. MSed up since 1993
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Postby 1eye » Mon Apr 26, 2010 3:39 pm

To return to the topic: 2010 scandal, I think before this situation changes, more people will have to die. Barak's father-in-law will not be enough. As the death toll mounts, the lawyers will be sharpening their pencils. As with tainted blood, we have still not learned the important lessons. That's why it takes more than one death to make one traffic light. I don't know. If it sounds like it makes sense, I'll listen. But if it doesn't, no medical or specialization degree is worth the parchment it's printed on.
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Morbid

Postby FlashHack » Mon Apr 26, 2010 3:42 pm

So, are you asking for volunteers? 8O
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Postby 1eye » Mon Apr 26, 2010 3:54 pm

I think some of us would rather volunteer than face much more of the uncertain and crippled future being offered by our doctors. If I knew it would be some kind of a tipping point, I would certainly volunteer. But I think it'll take some strong-arm-dictator taking over leadership of some of our novel's main characters and volunteering *them*.
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Let's Vote

Postby FlashHack » Mon Apr 26, 2010 3:55 pm

Well, if we have to give them someone, I vote for Bob. :D
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Re: CCSVI procedures

Postby Sillygirl » Tue Apr 27, 2010 2:08 pm

Rosegirl wrote:S
So, while we are all desperate to be liberated, there are good reasons why our doctors urge us to proceed with caution. If you need to be treated now, do so, but make sure you deal with a qualified doctor, and try and get your data included in a MS study.
Rosegirl


Couldn't agree more.

I believe the choice should be ours and those proceeding now do so at their own risk, with the option for treatment results to be shared and studied.
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Postby Lyon » Tue Apr 27, 2010 4:27 pm

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Re: CCSVI and Tysabri

Postby mmcc » Tue Apr 27, 2010 5:58 pm

Opera wrote:Hi All,

At the last count the death toll from Tysabri was 49 I think. It is pity the Neuro's are silent about that when talking of the dangers of CCSVI procedure.

Quote your source, please - and how many people were taking Tysabri? The incidents of PML are very well documented and the number you stated is massively higher than I have ever seen. Further - the issue is the risk - it is 1 in 1,000.

Personally, I am willing to take a 1 in 1,000 risk, and I am willing to try liberation surgery which has an unknown risk, but what is the known risk so far? 2 people dying out of how many having had the surgery? Unless the number who have had the surgery is more than 2,000, the risk is higher (at least if stents are used). Unlike Tysabri, I don't think the reporting of side effects is mandatory.

Everyone needs to make their own risk benefit decision, but I think it is important to report as accurately as possible on the risk AND the benefits. I am sure there are others here who took Novantrone - a VERY effective drug for me and many others, but it also carries serious risks - congestive heart failure being one. That doesn't mean it wasn;t worth the risk - it was (for me).

Talking about the risks is not "negative," it is sensible.
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Re: CCSVI and Tysabri

Postby dodgeviper » Tue Apr 27, 2010 8:11 pm

mmcc wrote:
Opera wrote:Hi All,

At the last count the death toll from Tysabri was 49 I think. It is pity the Neuro's are silent about that when talking of the dangers of CCSVI procedure.

Quote your source, please - and how many people were taking Tysabri? The incidents of PML are very well documented and the number you stated is massively higher than I have ever seen. Further - the issue is the risk - it is 1 in 1,000.

Personally, I am willing to take a 1 in 1,000 risk, and I am willing to try liberation surgery which has an unknown risk, but what is the known risk so far? 2 people dying out of how many having had the surgery? Unless the number who have had the surgery is more than 2,000, the risk is higher (at least if stents are used). Unlike Tysabri, I don't think the reporting of side effects is mandatory.



You asked another person to report their sources, so I will do the same with respect to your statement "2 people dying out of how many having the surgery?" TiMS readers know the situation with respect to Holly; her sister's posts after Holly's death appear here. Ascribing the death to CCSVI treatment is not fully accurate, according to the deceased Holly's sister. That is POSSIBLY related death Number 1. Is there a source of your information as to death Number 2? I certainly appreciate your willingness to provide the source for this claim as we both recognize the importance of supporting our statements here. Thanks.
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Postby bluesky63 » Tue Apr 27, 2010 9:01 pm

There is a need to separate balloon procedures from stenting when you're talking about risks. Balloon procedures are considered safe. They are not risk-free, but I really, really wish that they could be separated from the stents.

And I too would like to know where this second death was. ??

And -- there is, in my mind anyway, NO comparison between angioplasty to open a blocked vein vs. the side effect profile of a monthly infusion like Tysabri. PML is only one of the issues of Tysabri. . There's liver damage, allergic reactions, infections, and the whole weird melanoma thing. You can't just say that taking Tysabri means a 1 in 1000 risk if a problem when it's having systemic effects every time you have that infusion.

By the way, I found this -- 46 cases of PML, not 46 deaths, with 11 deaths:

April 15, 2010 3:28 PM EDT
According to some headlines from the Dow Jones Newswire, Boigen (Nasdaq: BIIB) has reported two more deaths from PML in Tysabri patients over the past month. The company said that, as of April 6, 46 cases of PML were reported, eventually leading to 11 deaths.
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Postby sbr487 » Wed Apr 28, 2010 12:49 am

Always remind yourselves that given two different methods of fixing an issues, always choose the one that it closer to the root cause. To me, CCSVI is closer to MS problem than immune suppressants like Tsyabri ...
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Postby patientx » Wed Apr 28, 2010 6:24 am

There is a need to separate balloon procedures from stenting when you're talking about risks. Balloon procedures are considered safe.


True for arterial ballooning, but can this be definitively said for venous angioplasty, given that the veins have much different structure than arteries? And the fact that venoplasty, particularly of the jugular veins, is not as common as arterial ballooning?
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Postby bluesky63 » Wed Apr 28, 2010 8:30 am

I struggled with this statement, especially since I wanted to give a source or a link. I also hate posting in an emotional state. So here's why I went ahead: after having had three appointments now with "names" in this field, and having them reassure me after hearing all my paranoid questions about the procedure, I genuinely believe that ballooning is pretty darn safe, even for someone like me who has reason to believe that their veins could be extra weak from a hereditary condition.

One doctor worked half the time with veins; another is an international expert in venous issues; another is considered one of the premier experts in the whole field of vascular surgery. I believe them when they say it's safe.

I have also searched both pubmed and google for apropriate links, but most vascular surgeons use "angioplasty" when they mean both arteries and veins, and most published references to venoplasty are in connection to dire procedures for liver transplants, coronary disease, etc. -- none of which provide clean stats we could link to for straightforward venoplasty without including risks related to the other dire conditions.

So . . . no good links to back up the statement about overall safety compared other options. But I still believe it:-)
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PTA

Postby FlashHack » Wed Apr 28, 2010 9:32 am

Just a little history on Percutaneous Transluminal Angioplasty (PTA).

After forcing my way in to see a Vascular surgeon in January, I forced my way in to see an Interventional Radiologist here at Oregon Health & Science University. While waiting to see him, I had nothing to do but read the large brass plaque on the wall which explained why the IR unit is named The Dotter Institute. Dr. Dotter performed the world's first PTA procedure right there at OHSU back in 1964. At the time, it was considered revolutionary and not a little controversial. Now it is routine and older than the flag Neil Armstrong planted on the moon.

Ironically, the IR's at OHSU declined to touch me because of the controversy that surrounds CCSVI. I live in the birthplace of PTA and I will be forced to travel halfway around the world to have it done.
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Postby Lyon » Wed Apr 28, 2010 12:22 pm

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