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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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concerned
PostPosted: Fri Nov 19, 2010 5:25 pm 
Today on the Facebook CCSVI in MS page there was a post about other people dying in Costa Rica that was apparently taken down.

Anyone have any info on this?
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TMrox
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PostPosted: Fri Nov 19, 2010 5:34 pm 
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I don't know whether this is true. That's why I asked:

http://tinyurl.com/28thg4h

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.


Last edited by TMrox on Mon Nov 22, 2010 11:00 am, edited 3 times in total.

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marcstck
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PostPosted: Fri Nov 19, 2010 5:39 pm 
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There was this paragraph, though not about deaths per se, buried in an otherwise positive CCSVI article:

Quote:
The two also saw that liberation therapy isn't for everybody. One woman's procedure was aborted because of complications with her heart and blood pressure. Another man needed emergency surgery because of blood clotting, a risk associated with the procedure.


http://www.canada.com/Couple+ecstatic+a ... story.html

Made me wonder about how many other such incidents we are not hearing about…

At the very least, some kind of effort needs to be made to track the patients worldwide that are traveling to get the LP. Most of them vanish into a black hole after undergoing the procedure. Were they successes? Failures? Aside from the less than 10% that we've heard from, it's all guesswork…

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concerned
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PostPosted: Fri Nov 19, 2010 5:48 pm 
I also heard there was a couple people from Quebec who were treated in Poland and needed emergency surgery to address some kind of complication.


When Simka posted his numbers about safety etc., how did he know beyond the two or so days after the procedure when people returned home?
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cheerleader
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PostPosted: Fri Nov 19, 2010 6:07 pm 
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TMrox wrote:
I don't know whether this is true. That's why I asked:

http://tinyurl.com/28thg4h

Someone living in Costa Rica said:

"This is the third death alone here in Costa Rica...source...directly from Doctors at that Clinic and from other Doctors my family is related to. My sister is a specialist Doctor here in Costa Rica and so is her husband."


this was written by a competing medical tourism company, Rox. it is not true. I froze the wall today on Facebook, and removed the rumors that were being put out by this woman in an attempt to generate business for her company. Truly unbelievable.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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concerned
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PostPosted: Fri Nov 19, 2010 6:13 pm 
Is there any proof that it's not true besides that it's coming from a rival company? Maybe they would be more in the know?
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Cece
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PostPosted: Fri Nov 19, 2010 6:57 pm 
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marcstck wrote:
At the very least, some kind of effort needs to be made to track the patients worldwide that are traveling to get the LP. Most of them vanish into a black hole after undergoing the procedure. Were they successes? Failures? Aside from the less than 10% that we've heard from, it's all guesswork…

A lot of the complications of CCSVI venoplasty result from a lack of follow-up care and an inability to get the procedure repeated and improper anticoagulation. I'm not sure what we could do with the data on our medical tourists if we had it, it would be hard to draw conclusions from it.

Registry data on patients treated with access to follow-up care will be more meaningful, this is what Dr. Hubbard is doing.
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thornyrose76
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PostPosted: Fri Nov 19, 2010 7:41 pm 
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Aftercare is for most in Canada not there. I live in Manitoba and if problems arise I'll have to borrow the money and travel back to New york.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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