it's all about the valves....yay or nay?

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

it's all about the valves....yay or nay?

Postby Cece » Sun Feb 19, 2012 7:14 pm

http://www.facebook.com/notes/ms-ccsvi- ... 0389560713
“It's all about the valves” PRO (Michael Arata, USA) / CON (Bulent Arslan, USA)

The debate about whether the Valves were at the bottom of every case of CCSVI. Mike Arata identified four categories of CCSVI:
Valvular CCSVI most common (good results)
Restrictive CCSVI patients who don’t have valves (not good results)
Compressive CCSVI (possible treatment)
Inflow CCSVI (very rare but untreatable)
He only operated on the cases with valvular problems. When only valvular treatment is carried out there is no need for retreatment.

Arslan Bulent disagreed and said that other problems within the veins could be treated, not all were due to valvular problems. He identified a couple of cases of vein stenoses that could easily and effective be treated.
A vote was taken and Arslan Bulent argument won the day.

In my own case, it was indeed all about the valves. Nonfunctional valves with thickened leaflets blocking flow in both jugulars. It is interesting to hear how Dr. Arata breaks down the groups (valvular, compressive, restrictive, and inflow). Inflow CCSVI would be if a sinus is missing or stenotic and blocks flow into the jugular. Compressive CCSVI would be if muscle or bone or artery is compressing the vein. Restrictive CCSVI? That must be actual narrowed veins or hypoplasia. Would he only balloon in the azygous if a valvular problem was seen? Is he including septums as the same as valves?

Dr. Arslan won the debate, and I suppose he would have to, because the argument that it's all about the valves can be defeated with a single counter-example. But it's still mostly about the valves.
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Re: it's all about the valves....yay or nay?

Postby Cece » Sun Apr 07, 2013 7:51 am

bumped for you, Nigel

This was 2012 and does not represent Dr. Arata's current thoughts on CCSVI, which have been much discussed lately.
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Re: it's all about the valves....yay or nay?

Postby 1eye » Sun Apr 07, 2013 4:17 pm

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.
"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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Re: it's all about the valves....yay or nay?

Postby Cece » Sun Apr 07, 2013 4:42 pm

1eye wrote:I presume if these proposed classifications of CCSVI have been dismissed in less than a year, there is some reason.

"it's all about the vagus"
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Re: it's all about the valves....yay or nay?

Postby CureIous » Sun Apr 07, 2013 7:36 pm

Yeah, the "one size fits all" approach, works every time.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: it's all about the valves....yay or nay?

Postby 1eye » Sun Apr 07, 2013 7:45 pm

How does my vagus affect whether I can walk, play the guitar, take a hot bath?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: it's all about the valves....yay or nay?

Postby NZer1 » Sun Apr 07, 2013 9:37 pm

Thanks Cece,
I guess more time, more experiments, more observation, and more speculation has to flow under the bridge.
As least Mike Arata sticking his neck out has made discussion necessary! :)
;)
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