Just posted to my blog late last night. This post may cause some angst, as it's not blindly pro-CCSVI, but it's my honest assessment of where we've been, where we are now, and the best way to move forward with Dr. Zamboni's theory.http://www.wheelchairkamikaze.com/2010/ ... ccsvi.html
You mention about hysteria and extremism. I don’t think for everyone it’s the fact that we cannot get ccsvi treatment right now that’s getting us fired up. Most people are intelligent beings and understand that this is very new and needs to be proven. All most of us we want the right to control our own health. Right now SOME neurologists are saying what we can and cannot do. Just look at the 2.4 million being awarded from the MS society is it not going entirely to studies run by neurologists? Wouldn’t you expect a vascular Dr to control a study on a vascular issue? Even my own neurologist told me that blocked neck veins are perfectly harmless. They do not have the expertise in the vascular field to control this matter. I want a vascular Dr to tell me what should be done. They should be the ones telling us what to do. Right now neurologists are controlling our ability to have proper health care. I can see where a great deal of anger comes from this. It gets me fired up as well. Just because we have MS doesn’t mean neurologist should control every aspect of our health. I do believe that we need to fight for this to change. Us as a ms community have a voice and we should use it wisely. A lot of this hysteria we are seeing is from people venting their anger on blogs, forums etc. It’s the only way for some people to get rid of this frustration. I think this frustration needs to be pointed in the right direction. We just need some organization so we don’t look like these crazy fools.
Here's another piece of heresy: neurologists are not the enemy. Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS. They can identify blocked veins. Once you get into the effects of those blocked veins are having on the CNS, you're into territory covered by neurology. Therefore, neurologists are a vital part of determining the relationship between CCSVI and MS. All of the studies funded by the MS Society's do include neurovascular experts as part of the studies.
It is possible that the blocked veins being found are entirely harmless. The CNS venous system has been so little studied that there is very little data on the number of people, healthy or not, who are walking around with blockages in their veins. We're not talking about arteries here, in which blockages almost always signify a potentially dire situation. Venous anatomy is much more flexible (both literally and figuratively) then arterial anatomy. There is redundancy built into venous systems, and collateral veins develop to take up the slack when the primary vessels develop problems.
This is not to say that the blocked veins are harmless. This is one of the known unknowns about CCSVI. It could well turn out that a significant portion of the "healthy" population has blockages that would be termed CCSVI, without suffering any ill effects from these blockages. On the other hand, it's possible, maybe even probable, that CCSVI blockages play a major role in MS (and maybe even some other neurologic diseases). As of this moment, though, we simply do not know.
To make the assertion that neurologists should play no role in the study of CCSVI is a completely misguided notion. There's lots of talk of "plumbers" and "electricians" here on TIMS. If we were simply talking about blockages for blockages sake in CCSVI, then, yes, we should only deal with plumbers. But since these blockages are allegedly causing severe dysfunction in our central nervous systems, the electricians are required to ascertain just how and what disrupted blood flow is doing to the CNS.
If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.
CCSVI presents a complicated picture, experts in multiple disciplines will be required to sort it out.