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I presume if these proposed classifications of CCSVI have been dismissed in less than a year, there is some reason.
I would like to see more agreement from practitioners, and from the scientific community in general, on what, if any, different forms of problems are likely to be encountered in these investigations. Dr. Zamboni has also described several classifications, which may or may not map directly to symptoms, pathology, other systems of classification, etc.
The situation as it stands seems to be some combination of making things up as we go, and relying to varying degrees, on various published but unrepeated studies. No two studies have been found to have similar results. There is widespread inconsistency in what constitutes appropriate methodology. There are many suspect stories, with some clear conflicts of interest. Those circumstances leave sufferers of "MS", or whatever you are calling it lately, in an untenable position. We are expected to know as much or more than our doctors, which we are mostly not qualified to do.
Elsewhere, even practitioners do not agree as to whether CCSVI procedures are treating primarily blood vessels, or nerves.
Meanwhile vacillation seems to exist on both sides of the Great Divide, with neurologists now allowing that maybe some circulation problems might exist in some cases sometimes.
I went to see my family doctor a couple of days ago, and was told: while the side effects of the current "Immune reset" homologous stem cell therapy do include death, the possible side effects of CCSVI treatment may also include death. As well, it is too expensive, unless you have either insurance coverage or independent wealth. For that matter, death is also a guaranteed side effect of life.
Perhaps wrongly, I see the stem cell treatment as an attempt to improve on bone marrow transplantation, with similar risks and success rates,
Much of what was said came across as a carefully prepared set of contingency-based arguments, but at least we were talking.
To me, even the most expensive studies may be affected by the professional rivalry evident between the outspoken neurology camp (often influenced by drug company bias), and the CCSVI-therapy camp. This therapy is hobbled by lack of support from insurance companies, public or private. The CCSVI PTA treatment procedure is expensive, and there are no standards. The proponents of CCSVI treatment are subject to commercial interests of their own. Medical tourism is frequently resorted to. There is no organized monitoring of patients. They are mostly left to fate, because they tried to work outside the system, which was letting them down.
As long as there is pressure and organized opinion, from purportedly scientific groups of people, with a very predictable bias one way or the other, we patients will continue to have a lot to try our patience.
People will continue to get poor or no treatment, suffer more, and die sooner as a result.
In addition to all of that, my individual problems include an extremely dysfunctional history with some neurologists I have encountered, and shrinking financial means. I can no longer afford experiments with planned results. I need these guys to stop bickering and acting like petulant children, for all the world to see, both in the media (including the Internet) and in so-called peer-reviewed professional journals. Conflicted publication of dealings with public bodies, targeted at private and public insurance providers, are not on, either. I guess when it comes down to dollars, truth is slow to come by. At least, the governed masses and share/stakeholders may clue in someday. Insurance companies can also be beneficiaries.
Finally, I don't do Facebook. Their tentacles are too tight, tangled and entangling, for me. YMMV.
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"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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