New Wheelchair Kamikaze Post on the Current State of CCSVI

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

New Wheelchair Kamikaze Post on the Current State of CCSVI

Postby marcstck » Mon Jun 14, 2010 1:11 pm

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
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Postby AlmostClever » Mon Jun 14, 2010 1:14 pm

Thanks for this, M!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby foreignlesion » Mon Jun 14, 2010 1:30 pm

You are truely a voice of reason adrift in a sea of madness!
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Re: New Wheelchair Kamikaze Post on the Current State of CCS

Postby nicko » Mon Jun 14, 2010 2:14 pm

marcstck wrote: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


Well said,

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.
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Postby L » Mon Jun 14, 2010 2:37 pm

Perhaps it should be worded 'Thus far the only positive peer reviewed research published' because you missed out the University Hospital Charité (Berlin) paper (which may not be such a bad thing, but for the sake of completeness..)

The article sums up the situation well enough as it is mind you.
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Re: New Wheelchair Kamikaze Post on the Current State of CCS

Postby marcstck » Mon Jun 14, 2010 2:43 pm

nicko wrote:
marcstck wrote: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


Well said,

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.
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Postby marcstck » Mon Jun 14, 2010 2:47 pm

L wrote:Perhaps it should be worded 'Thus far the only positive peer reviewed research published' because you missed out the University Hospital Charité (Berlin) paper (which may not be such a bad thing, but for the sake of completeness..)

The article sums up the situation well enough as it is mind you.


thanks, change made...
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Postby patientx » Mon Jun 14, 2010 2:53 pm

marcstck wrote: Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS.

I was told exactly the same thing by a few vascular experts. Not that there's anything wrong in this, and their candor was welcome.

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.

Hey, good (counter)analogy.
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agree

Postby mohzi » Mon Jun 14, 2010 2:57 pm

I have to agree with your comments. As bad as I want CCSVI to hold up over time, I think we must all take a deep breath as it unfolds.

At the very least, this has opened up a very new exciting field in medicine and disease process.
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Postby Lyon » Mon Jun 14, 2010 3:02 pm

.
Last edited by Lyon on Sun Nov 20, 2011 8:25 pm, edited 1 time in total.
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Postby Hopeful10 » Mon Jun 14, 2010 3:09 pm

patientx wrote:
marcstck wrote: 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.

Hey, good (counter)analogy.


It is a good analogy, but not as a counter-analogy. If your sink overflowed and shorted out the electrical outlets, it's true that you'd need to call an electrician, but you'd only do so after the plummer diagnosed and fixed the problem with the sink. The plummer would need to take the lead, and only after he was done would the electrician be helpful.

Returning to the studies funded by the MS Societies, the vascular specialists should be leading or co-leading the studies. However, most of the studies are being led solely by neurologists.
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Postby JCB » Mon Jun 14, 2010 3:32 pm

markstck,

I can't argue with your logic about Neurologist being involved or even leading the studies. My concern is that they have an open enough mind to see a new potential cause and affect for their precious MS. I sat through a presentation put on by a neurologist about all the new drugs currently in trials, along with their benefits and risks. When I brought up CCSVI he said "If I had a daughter with MS I would not pursue CCSVI". That is my concern with Neuro's running the show. I would like an unbiased final report, not sure I'm gonna get one.

Money talks people, let's back true science. If CCSVI does not pan out, then fine let's move on. The problem is we have people running the show that have already decided it's a worthless avenue to pursue. I hope I'm proven wrong.
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Postby concerned » Mon Jun 14, 2010 3:38 pm

Isn't it just as troubling to have a research team that have already decided that CCSVI is a worthwhile avenue to pursue? (that's what people want, right?)
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Postby foreignlesion » Mon Jun 14, 2010 3:57 pm

Let's also not forget that neurologists also have extensive experience with the cerebral vascular system given that they are the primary authority with regards to both strokes and aneurysms.....both of which are primarily vascular in nature.
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Postby concerned » Mon Jun 14, 2010 4:03 pm

I've mentioned that elsewhere but it fell on dead ears. People are more comfortable with their plumber analogies.
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