A balanced and informative post, but I have to disagree with the take on the statistics from Siskin's clinic. If someone said, "Hey, here's a fairly straightforward procedure in which a third of people get dramatic improvements, another third have minor improvement, and another third have no benefit, but in a year you might have to do it again because the effects might not last," how many of us would get interested?
TWO THIRDS improvement! And with venoplasty alone -- not including stents, which completely muddy the picture -- the rate of complications is not as anywhere near as dire. Where are the statistics on venoplasty alone? Most people who have had just venoplasty do *not* require blood tests and monitoring; plavix is very straightforward; it is not at all in the same league as a stent.
So -- venoplasty -- two thirds improvement, with a one-third chance of it being dramatic, and so what if you end up doing it again -- sounds good to me!
Especially compared with our other horrifying choices??? Tysabri (PML, cancer, infection, anaphylaxis)? Natural progression? Et cetera?
In his thread, on page 262 (I think) Dr. Sclafani stated, "We expect patients who get venous angioplasty to restenose. . . . I do not consider restenosis a failure of the technique but a component of the treatment."
I would say, forget about mixing stent issues with angioplasty issues, and focus on the expertise of a truly knowledgeable veteran like Dr. Sclafani.
Thank you, Marc, for the statistics and the post. I interpret them differently because I am thrilled to have options that didn't exist before to treat my relentlessly dsiabling disease. I have failed the other choices, and as someone who fits into the middle category (minor improvements, probably will benefit from another procedure, had some unusual complications from angioplasty but easily dealt with and MUCH more straightforward than SEVERE complications I have had from infusion therapy and injection therapy), I and my children -- who rely on me, their only parent -- are so grateful for even the "minor" improvements, which have made a huge difference in our daily lives.
I worry that a rising backlash against CCSVI -- mixing the *appropriate* concerns about improper follow-up from medical tourism, stents, etc. with the relatively benign venoplasty alone -- will result in throwing the baby out with the bathwater. We should all be cautious, but it is a particular responsibility of anyone who is in a position of power when it comes to affecting public opinion. Ooof -- as always, I have said too much and should not post under emotion. Sorry. I will probably come back later and edit. Take it with a grain of salt.
Edited to add -- I don't disagree that people who can afford to wait probably should -- I just feel that (as you do in fact point out) a procedure with stents is a whole different beast than a procedure with venoplasty alone. But in the eyes of the world, they appear to be one and the same, and the "dangers" that come up more and more recently have the potential to smear both procedures.
So I am pondering how to make it crystal clear that venoplasty is not stenting, and has a different risk profile. This is more directed at the world than at any individual. So, world, any ideas?
OK, over and out.
The backlash wil not occur becuase of any mix up between appropriate concerns and inappropriate concerns. If there is a backlash it is more likely to be the result of the "myths of liberation" that surfaced over the last year or so.
Funny I never heard you express any concern about "people in positions of power effecting public opinion" when the opinion expressed came from someone involved with the "CCSVI movement".
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