This Is MS Multiple Sclerosis Community: Knowledge & Support

There are four registrated death cases folowing Liberation treatment so far:

Holly Shean, August 2009, Liberated by dr. Dake team, Stanford.
Mahir Mostic, October 2010, Liberated by Dr Marcial Fallas CCSVI team, Costa Rica.
Margo Larayne Oliver, March 2011, Liberated by Dr Marcial Fallas CCSVI team, Costa Rica.
Maralyn Clarke, March 2011, Liberated in Newport Beach, CA

Ms. Shean's passing was stated by the coroner to be unrelated to the venoplasty procedure. That she was on anticoagulants was a complicating factor.

Mr. Mostic passed away after a treatable clotting complication went untreated in Canada. By the time he made it back to Costa Rica, time had been lost and it was a more difficult clot to treat. Thrombolysis was used, which led to internal bleeding. There are other ways to treat such a clot.

I am not aware of the circumstances of Ms. Oliver.

Ms. Clarke passed away of a subdural hematoma. The coroner said it was due to natural causes. The timing however was after a venoplasty procedure. As part of the procedure, the catheter was inserted into the brain according to news reports, which must mean the dural sinuses.

Surgical procedures are not without complications, but there have been CCSVI safety studies from Dr. Siskin and Dr. Simka.

To use the names of these individuals as a political statement is despicable. The word 'liberated' is grossly inappropriate in this context.

Is this the same Malden that posted on here b4?

Otherwise, and not to nitpick, but why the deaths fixation and only 6 posts on the site?

Kinda unusual to be an expert on that and nothing else, unless its just to stir the pot of exhausted issues.

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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

rest in peace dear friends

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

As you seem to want to cover registered deaths then this project should keep you busy.

"The total worldwide total reported cases of Tysabri-linked PML stands at 181; the death count at 38.)"

Please report back with the names, dates and the Dr (and their area of specialty would be useful) issuing the prescription. Thanking you in advance.

Hello madendj,
This is helpful data in quantifying the overall risk of the CCSVI procedure. 1 in 4000 (1 in 5000 is probably a more accurate estimate) is a risk pwMS should understand when they choose which clinic to go to (Costa Rica does not fair well in your data but that could be for many reasons).
Risk of major complications is more important to most people and this was the subject of a recent paper already discussed in TiMS.
I have accepted the risk twice and it was worth it for me. The approach to risk must be left to pwMS and should not be decided by MS Neurologists and other so called experts, it is our life.
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

These numbers without statistics means nothing. Probably there are more deaths for people who died during a walk in the park. The important number could be which percentaje of people went for an angioplasty and died.

If you don't have that information, please don't post this subjective numbers.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

All odds are purely estimates, nobody can categorically prove, heck even get within 10,000 of :
A. How many have been treated, there is no worldwide registry, we do not even know, and using internet searches for those who gave their lives unwittingly for all of our benefits, is therefore not simple to ascertain, there are too many treatments by doctors we dont even know of flying under the radar,
and the deaths known so far, may be more, definitely not less, than the four precious souls listed.
B. While it would be nice to tell people, your risk of dying is approx. 1-4000, the FACT is we dont know what that number is, or whether it is substantially less due to learning curve "early on" fatalities, and since there is also no database nor worldwide registry for the treated/outcomes/complications, to make such statements is to make the same error that many reporters did early on, which is just BEGGING to have that number quoted and bandied about from one end of the internet to the other, inviting comparisons of "well those are incredibly low odds, you have better chance of dying from this procedure than hitting 4 of a kind in poker, or getting stung by a bee, my goodness what an incredibly dangerous procedure, and off we go, with 1-4000 never to be redacted from the record. Or perhaps we are cheating the reader, and it's worse, closer to 1-600. W-e d-o-n-t k-n-o-w.

The Fact is if we don't KNOW, or can reasonably ascertain, we should not say, let the facts stand and speak for themselves, to do otherwise is to cheapen their sacrifice.

_________________
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

Luckily early on, only a few were grasping the Stanford numbers and using as some macbre "odds simulator", with our tiny stastistical sampling, and we all know about the lovely science of statistics now dont we??

_________________
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

Very sad. These deaths demonstrate that there are indeed risks associated with blood thinners, going out of the country, lack of aftercare, thrombosis, and stents (was one of these stent related?).
No need to criticize this individual because they have a low post count, called it the liberation treatment, or didn't compare it to pml risks.

give me liberation or give me death.

there were four people shot in the city of Detroit last night. whereas i feel sorry, lets put it into perspective..

well, we all loved hearing about the "liberated from ms" stories. i ate it up. hopeing to be one of them.

for me it was kind of a kool-aid love story. i was so in love that i put somewhere in the back of my head any real risks or possible consequences and actually any bad risks were not being brought up much. they were mentioned but "i was in love" and i guess heard only what i wanted to hear. something like when i fell in love with my x. then when reality set in and things didn't work out the way they should have, i took a step back and thought i should have considered the whole picture. but, when you're "in love" things have a way of being what you want them to be.

now is now. the good the bad is being told. i'm no longer "in love" and i "want and need" to know all of what is going on before i throw myself into a "burning ring of fire"

someday in the future maybe but now is now. "and it i what it is"

He signed his posts Malden, although it looks like he may have edited that off. Malden was banned about a year ago.

http://www.ccsvi.mx/read-carefully-ccsvi

Horrible disease. But Ms. Oliver's death was five months post-treatment and unrelated. Malden or a mod, could the title be adjusted to three instead of four deaths following CCSVI treatment?

what is registrated?

anyway..... why not just name the thread... you will die after ccsvi treatment.... because everyone will eventually die....... oh, after paying taxes of course..... <shaking head>

my sympathy to the families.