2 deaths in Italian study, claims Swedish study

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

Postby sbr487 » Thu Aug 05, 2010 10:14 am

concerned wrote:How many people have taken Tysabri? not to say I'm all for that drug, but last I read it was 65,000 or something. And I see 11 deaths as of may 2010. How many people have been "liberated" and where have they all been tracked?


The difference is that:
* procedure's safety can only improve over time. I cant say the same thing about tsyabri. After all, stopping immune cells moving to brain and cleaning a normal virus in the body from infecting the brain are converse (its almost a catch-22)
* if CCSVI is true, it gets closer to root cause rather than manipulating the immune system when the issue lies elsewhere
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby selkie » Thu Aug 05, 2010 10:14 am

concerned wrote:How many people have taken Tysabri? not to say I'm all for that drug, but last I read it was 65,000 or something. And I see 11 deaths as of may 2010. How many people have been "liberated" and where have they all been tracked?


Since liberation is going on in several countries, they most likely haven't been tracked. Poland, Egypt, Kuwait, Bulgaria, India, the U.S., Mexico - aren't likely to be coordinating their efforts in tracking patients.

The best effort I've seen is the sharing that was done at the symposium on July 26th when doctors from all over the world came together to share their stories.

Again, if you're concerned, wait. I can't wait - I don't have the luxury of time as my age & disease progression are against me.

And it's not just Tysabri. How many deaths from interferons causing kidney/liver damage? Have they been tracked? How about the ineffectiveness of the CRABs altogether? I took Copaxone and my disease progressed anyway. I know one MS patient who killed himself - any of those drugs contribute to his depression or control it? I know a woman with MS who was on DMDs who died at 55 from MS related complications - she was on a morphine pump for extreme pain, something so horrible I won't bother to describe as I've never seen someone with MS have so much pain.

Your figure of 11 deaths was as of May - as of July they are 12 with 54 patients developing PML. (google it and look for a July date)

So you want to talk risk? Living with this disease is a risk. Make your own decision based on what is known. Wait for more research and trials, if that seems wisest to you. And yes, liberation is a risk. Tell me one thing in life that isn't?
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CCSVI Procedure/Deaths

Postby Shayk » Thu Aug 05, 2010 10:20 am

Selkie
I think the article is in error - there were 2 deaths at Stanford which have been gone over & gone over.


Yes, that info has been repeated ad nauseum. However, to the best of my knowledge it's not accurate as there was only 1 death.

From the CCSVI Alliance site:
CCSVI treatment is based on basic endovascular procedures (balloon angioplasty and stent placement) that have been commonplace for over 20 years.

The only published study of CCSVI Treatment safety is Dr. Zamboni’s Open Label study.

Of the 65 patients receiving balloon angioplasty (with 1 patient also receiving a stent), Dr. Zamboni’s patients experienced no serious health problems, a result consistent with a wide body of research on the general safety of endovascular procedures.

Regarding outcomes in the United States, one patient died of an intra-cerebral hemorrhage (bleeding within the brain), which occurred within 48 hours of having a CCSVI venous stent placed. The patient was taking a blood thinner, which is standard after all CCSVI interventional procedures. Bleeding associated with hemorrhages can be exacerbated when a patient is on a blood thinner.

According to doctors, the brain hemorrhage was not caused by the placement of the stent
.

Folks--let's strive for accuracy.

Sharon
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Postby selkie » Thu Aug 05, 2010 10:28 am

Thanks, Sharon,

My bad - I thought one patient at Stanford had died from complications of blood thinners, while another died from stent slippage. However maybe I'm getting that last case confused with the stent that slipped requiring surgery - that patient survived. Sorry.

But again, to me both of these incidents are known risks and acceptable - every surgery carries risks.

Thanks for the info on the Italian study.
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Postby MrSuccess » Thu Aug 05, 2010 11:14 am

Selkie - you can trust Sharon's posts.

As I have mentioned before ........ the CCSVI story is getting longer and harder to '' come-on-board '' as a new reader.

And honest mistakes are being made .... by good people.

Once again ..... I would suggest a regular BRIEF ... CCSVI information be regularly included on HOT topics . Those getting lot's of attention.

There are WAY too many '' sticky's'' ..... in my opinion .

Is there somebody out there that can put together a SHORT.. POINT FORM ... information . that will help new people get the FACTS . :idea:



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ccsvi alliance

Postby LivabirdsHubbie » Thu Aug 05, 2010 11:25 am

All,

if you haven't already done so, check out ccsvi alliance, great information from truly caring people
http://ccsvialliance.org/
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Postby selkie » Thu Aug 05, 2010 11:29 am

As I mentioned, Mr. Success, I thanked Sharon for the correction which means I do trust her post.
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Postby 1eye » Thu Aug 05, 2010 12:00 pm

That gets on some people's nerves, doesn't it? That they no longer have total control over most 'MS' patients, and those renegades actually get treatment 'outside a study.' It's not fair when the market crashes every time another drug fails or kills somebody. This Liberation thing, it should have to go through the same FDA-approval phases we have all grown to love. But this time, I would not bet the farm against Liberation. In fact Americans are quite fond of doing that for large groups, non? Do they not have an old and dusty track record of self-sacrifice for that aim?

That's how we know it works. Because of its name.

Drat! Where is my tuning fork?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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