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

Limited time offer

Postby 1eye » Thu Jul 21, 2011 9:47 am

Many detractors of the CCSVI theory have called its proponents desperate. They think people want it to be rubber-stamped and eased in and made freely available because they are grasping at any straw and don't want to wait for the required amount of time correct science takes. They say MS patients are falling for quackery and charlatanism and greed because they are unwilling to risk the possibility of spending time on placebo.

They also say that CCSVI is nonsense and proper testing would prove that.

Well, I have a compromise position to propose.

I realize that, having had angioplasty already once, I would likely not meet strict exclusion criteria.

However, I am willing to enter myself into any trial as a subject provided:

1. it is blinded to subject and physician, physician as to whether the person has had an MS diagnosis or CCSVI-positive MR or ultrasound results or prior procedures, subject blinded to whether or not the treatment is a sham
2. the trial has exclusion criteria that the subject may not have RRMS or milder forms.
3. the trial subject must have SPMS or less mild, such as PPMS or Marburg.
4. the trial subject must have EDSS 8.0 or greater, or a disabling symptom which has failed treatment for CCSVI using balloon angioplasty.
5. the blinding lasts for 1 year
6. the subjects are all given free testing, treatment and follow-up, placebo patients treated immediately the trial is unblinded.
7. testing for MS symptoms includes MS neurology, EDSS, timed walk, 9-hole peg, PASAT, quality-of-life questionnaire and Gadolinium-enhanced MRI before and after treatment, and testing for CCSVI uses both Dr. Zamboni's MyLabVinco and Dr. Haacke's 3T MR protocols, also before and after treatment. After treatment testing is done every 3 months for 1 year.
8. IVUS is used
9. the treating physician has performed >100 CCSVI procedures before.

This trial doesn't sound like one that will actually happen, but if it does, before I go for my next procedure, I'm your boy.
"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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Postby Cece » Thu Jul 21, 2011 10:56 am

It sounds good, it just needs funding.
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