Ouch. Somebody shot a hole in my theory. Oooo dat hoits.

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

Ouch. Somebody shot a hole in my theory. Oooo dat hoits.

Postby 1eye » Thu Apr 14, 2011 4:16 am

Actually somebody convinced CBC that Kelly Crowe and Peter Mansbridge could fill out the National's podcast of the French-language debates by letting the usual bunch of sympathetic neurologists like Doc "If-Everybody-Got-Tested-Nobody-Would-Go-In-A-Trial" Jock and all his cronies break the bad news to the over-hopeful. The only one missing from the list of suspects was the ubiquitous Dr. Baldy, but everybody has to have a turn, or it wouldn't be fair.

I've never seen a more gleeful lot of sad people. It is a great advertisement for the profession. You too, can have this much fun, on National television, at the expense of people in wheelchairs! So do your homework!
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Postby jackiejay » Thu Apr 14, 2011 4:25 am

Ok, they've decided with this study that "Clogged Veins don't cause MS"......great....but what about the clogged veins?.....if I have a clogged drain in my house I still need to get it fixed....they've kind of missed the point.
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Postby 1eye » Thu Apr 14, 2011 4:43 am

Not on the National. They would never miss a Point. I might be worried if I were them, or those doctors, or the magazine reporters, considering the prevalence of CCSVI in so-called healthy people. Seems to matter how long you live. Fancy that.

Well, not to worry. They've got it sussed. Somebody else's problem, I'm sure. Fancy a scone?
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Postby jackiejay » Thu Apr 14, 2011 4:51 am

can't stand the National...barely watch...substandard reporting, boring anchorman....one question, are there only 3 political commentators in Canada...night after night....steady gig for them, I guess...the bad part is that the taxpayers pay for all of it....
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Postby griff » Thu Apr 14, 2011 5:03 am

jackiejay wrote:Ok, they've decided with this study that "Clogged Veins don't cause MS"......great....but what about the clogged veins?.....if I have a clogged drain in my house I still need to get it fixed....they've kind of missed the point.


But if you do not know whether your clogged drain cause any problems in your house and you do not know how to fix that clogged drain without messing up other things and causing only more problems for you, then I suppose you will not fix your clogged drain for the time being... :(

I think we should not always blame neurologists and Big Pharma for all of our promblems. Who was the one who could not prepare a proper documentation on the treated patients? And I am not talking about anecdotical surveys coming from patients' own assessments.

Why can not clinics follow up on their local patients, e.g. in Poland or Bulgaria (I can mention other countries as well)? These are not huge countries, distance and travel is not a problem, local patients would be happy to go for check-ups every month. The money we paid them would cover much more than the cost of such follow-ups. Neurologists can be easily hired for this job in these countries. Keep in mind that cost is USD 2,000, income is USD 10,000. Would the USD 8,000 not cover these follow-ups?
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Re: Ouch. Somebody shot a hole in my theory. Oooo dat hoit

Postby Cece » Thu Apr 14, 2011 5:14 am

1eye wrote:I've never seen a more gleeful lot of sad people. It is a great advertisement for the profession. You too, can have this much fun, on National television, at the expense of people in wheelchairs! So do your homework!

"a more gleeful lot of sad people" -- lol, that description is so good, I don't even have to see it!
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Postby Doodles » Thu Apr 14, 2011 7:41 am

So, if CCSVI is not a causative factor in MS then MS and CCSVI should not be linked and there is now no reason whatsoever to continue to deny treatment for this vascular problem to people who have also been labelled "MS". The neuros are destroying their own argument. Venoplasty is safe and effective in treating various vascular problems and should now be available to those who have been told they have MS.
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Postby eric593 » Thu Apr 14, 2011 9:06 am

Doodles wrote:So, if CCSVI is not a causative factor in MS then MS and CCSVI should not be linked and there is now no reason whatsoever to continue to deny treatment for this vascular problem to people who have also been labelled "MS". The neuros are destroying their own argument. Venoplasty is safe and effective in treating various vascular problems and should now be available to those who have been told they have MS.


But if you can't connect it to MS, then you can't say that there's any PROBLEM associated with venous blockages. If both healthy people and those with other conditions have blockages, and the venous system is well known for its repetitiveness and ability to develop collaterals, then it becomes harder to say we have a problem that needs to be fixed. And we can't say it's related to MS symptoms when there are many with MS who apparently don't have CCSVI and many without neurological symptoms that do have CCSVI, according to the study.
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Postby 1eye » Thu Apr 14, 2011 9:39 am

Hypoxia, hypoglycemia, reduced perfusion, and iron deposition, are all attributable to venous outflow problems. These are the things that need studying. Mired in terminology and discussions of which angel causes which pinhead, 'science' is not likely to do me or anybody now alive any good.

The problem is, neurologists want it both ways. They want to say that CCSVI has nothing to do with 'MS', and they want to have the right to say that their 'MS' patients may not get their veins treated without asking. Well, which is it? I say, gol, dang, that venoplasty sure made my 'something-or-other' feel better. I'll take it. As we used to say in the high tech biz, "Ship it."
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Postby Lyon » Thu Apr 14, 2011 11:39 am

eric593 wrote:But if you can't connect it to MS, then you can't say that there's any PROBLEM associated with venous blockages. If both healthy people and those with other conditions have blockages, and the venous system is well known for its repetitiveness and ability to develop collaterals, then it becomes harder to say we have a problem that needs to be fixed. And we can't say it's related to MS symptoms when there are many with MS who apparently don't have CCSVI and many without neurological symptoms that do have CCSVI, according to the study.
Things get kind of mixed up when you get into that argument but you've done a good job of pointing it out.
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Postby Blaze » Thu Apr 14, 2011 12:00 pm

griff wrote:
jackiejay wrote:Ok, they've decided with this study that "Clogged Veins don't cause MS"......great....but what about the clogged veins?.....if I have a clogged drain in my house I still need to get it fixed....they've kind of missed the point.


But if you do not know whether your clogged drain cause any problems in your house and you do not know how to fix that clogged drain without messing up other things and causing only more problems for you, then I suppose you will not fix your clogged drain for the time being... :(



In that situation, I don't try to do it myself. I call in the expert--the plumber. I did just that last year and Voila, he fixed the problem.

Yesterday, I had an electrical problem. Guess who I called. The electrician. He fixed that problem.

That's exactly what I want to be able to do with my body. Let the plumber (vascular surgeon) fix my plumbing (veins) problem. Let the electrician (neurologist) deal with the wiring (CNS) problem. Best of all would be the skilled trades working together instead of fighting each other while my body continues to deteriorate.
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Postby Doodles » Thu Apr 14, 2011 3:15 pm

Whether or not CCSVI is a causative factor in MS is irrelevant. My point is that the MS neurologists, if they want to maintain their argument, cannot now say that MS sufferers must ask them for permission to have a vascular problem corrected. Some of the controls used in the Buffalo study, as I understand it, were related to the MS sufferers and they showed evidence of CCSVI. So, is the IUP consensus document correct that CCSVI is congenital? If so, one would assume that the healthy controls could have this vascular problems corrected; why does the same not apply to those who have MS?
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Postby CureIous » Thu Apr 14, 2011 6:23 pm

Doodles wrote:Whether or not CCSVI is a causative factor in MS is irrelevant. My point is that the MS neurologists, if they want to maintain their argument, cannot now say that MS sufferers must ask them for permission to have a vascular problem corrected. Some of the controls used in the Buffalo study, as I understand it, were related to the MS sufferers and they showed evidence of CCSVI. So, is the IUP consensus document correct that CCSVI is congenital? If so, one would assume that the healthy controls could have this vascular problems corrected; why does the same not apply to those who have MS?


Yup, the accusations of circular reasoning definitely go both ways. Which is okay I guess, if you like merry-go-rounds. While fence sitting is inherently advantageous to catch a glimpse of both sides, inevitably one of two things will happen:

1. You will have to sleep eventually, almost assuredly you will fall off on to one side, or the other, no one can stay that vigilant forever. Not if, when.

2. You will see clear to land on one side, or the other, at which point a few glimpses through the holes will suffice to see what's going on on the other side.

One is a decision that will pretty much get made for you, the other is your choice alone.

But the fence sitting itself, is merely a temporary position. No human is truly and purely scientific, that's one absolute in a world of many shades of grey.

It is humorous to watch some attempt to convince us that they have built a sturdy aerie atop said fence from which all can be seen and accounted for and taken into consideration before choosing, but I'm having a hard time believing it.
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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Postby CureIous » Thu Apr 14, 2011 6:51 pm

Doodles wrote:So, if CCSVI is not a causative factor in MS then MS and CCSVI should not be linked and there is now no reason whatsoever to continue to deny treatment for this vascular problem to people who have also been labelled "MS". The neuros are destroying their own argument. Venoplasty is safe and effective in treating various vascular problems and should now be available to those who have been told they have MS.


I'll once again quote Dr. Dake per the global symptoms, that they resolved the most favorably in his patients vs. obvious degenerative nerve related issues.

Therefore, it stands to reason that there just may be symptoms which are *exclusive* to CCSVI, and respond very well to treatment, cog fog, fatigue, memory etc etc. Since that is a significant portion of all that entailed my particular MS condition, resolving the CCSVI, resolved the global symptoms. Whether or not it did, or did not cause my MS or vice versa, couldn't care less. If it had not been successful in relieving those symptoms, then I wasted a ton of time and money but was left back where I started (and I realize not everyone is "left back where they started").

Nowhere in there is a necessity to prove anything, other than "did fixing my veins, solve the greatest complaints that had a severe impact on my QOL?". I will probably be dead and gone before anything is proven either way.

My CCSVI, to my full satisfaction, was proven to have a significant impact on my global symptoms. Pathology+symptoms+treatment=relief cannot be that difficult an equation for these Dr.'s to fathom. In the end, they are choosing political sides based on predispositions.

Just imagine with me, if the 2004 Mark, just by happenstance, was magically transported not to a neurologists office, but a vascular specialist. He takes a look at what ails me, there's been no other scans, MRI's, spinal taps, neuro function tests, nothing, but via my list of complaints (and leaving out the sudden onset diplopia), he decides to scan my veins, discovers stenosis on both sides, collateral network yadda yadda, and treats me.

I find my fatigue vanishes nearly overnight, along with all the other global symptoms, and continue on my merry way. Let's say that paradigm continued to present day. By rights, I have no inkling of ever having MS, no need for a silly MRI, my life is robust and active, fatigue and all those other things, still gone, and the entire episode just a distant memory.

The only difference between that scenario, and the one now (which of course won't apply equally to everyone), is some other guy in a lab coat saying I have MS. If that had happened, in 2004, I would be of the opinion that MS was no big deal at all, if QOL is any indication.

That's 7 years, got 2 of those nearly knocked down and life couldn't POSSIBLY be any better than it is right now. Yeah, not sure if the myelin is going to grow back, or how much brain damage there really is, or how much better things would be now without that brain damage, but not knowing the hypothetical outcome is not something to lose sleep over, though it makes some interesting conversation I guess.
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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Postby 1eye » Fri Apr 15, 2011 8:18 am

CureIous wrote:
Doodles wrote:Whether or not CCSVI is a causative factor in MS is irrelevant. My point is that the MS neurologists, if they want to maintain their argument, cannot now say that MS sufferers must ask them for permission to have a vascular problem corrected. Some of the controls used in the Buffalo study, as I understand it, were related to the MS sufferers and they showed evidence of CCSVI. So, is the IUP consensus document correct that CCSVI is congenital? If so, one would assume that the healthy controls could have this vascular problems corrected; why does the same not apply to those who have MS?


Yup, the accusations of circular reasoning definitely go both ways. Which is okay I guess, if you like merry-go-rounds. While fence sitting is inherently advantageous to catch a glimpse of both sides, inevitably one of two things will happen:

1. You will have to sleep eventually, almost assuredly you will fall off on to one side, or the other, no one can stay that vigilant forever. Not if, when.

2. You will see clear to land on one side, or the other, at which point a few glimpses through the holes will suffice to see what's going on on the other side.

One is a decision that will pretty much get made for you, the other is your choice alone.

But the fence sitting itself, is merely a temporary position. No human is truly and purely scientific, that's one absolute in a world of many shades of grey.

It is humorous to watch some attempt to convince us that they have built a sturdy aerie atop said fence from which all can be seen and accounted for and taken into consideration before choosing, but I'm having a hard time believing it.


I think Mr. Zivadinov more than hinted that, as we age the problem of venous malformations, wherever they may occur in our bodies, becomes more of a serious problem, even for those not currently complaining of 'MS'.

I also think your writing is some of the best I've read.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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