Have we been thrown dust into our eyes?

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

Have we been thrown dust into our eyes?

Postby Leonard » Thu Dec 23, 2010 10:56 pm

Neurologists keep on stressing that also people without MS have venous strictures in the neck. I am sure this is true, Zivadinov and others found this as well, although percentages largely differ.. But this is confusing the issue.

Isn't the right question: what happens to those who do have MS (and incidently - perhaps I should say almost fortunately - also have the venous blockages), what happens to them if these blocked veins are opened and oxygen and glucose rich blood can flow through the brain?

Therefore, have we been focussing for too long on the wrong question?
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Postby concerned » Thu Dec 23, 2010 11:01 pm

The problem was, that it was billed as the genesis of what we call "MS" and that it was a condition that was exclusive to MS patients. Zamboni said something like "if there is no stenosis, there is no progression... that is the theory" and it looks as though maybe theory was wrong.

I've often wondered whether it could be a co-morbidity issue in MS and whether "liberation" might help but unfortunately, the evidence just isn't there one way or the other.
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Postby EJC » Fri Dec 24, 2010 5:01 am

CCSVI is the beginning of the understanding of what is currently defined as "MS".

Over the next decade what we understand as MS is likely to be broken down into a number of similar but significantly differing conditions that lead to roughly the same end result, albeit in differing degrees.

The medical establishment will gradually start to unravel what they've not been able to understand for years.

CCSVI, or it's theory is the trigger to unlocking this understanding, it is genuinely a once in alifetime medical breakthrough with regard to the understanding of MS.

However what MS sufferers don't have is the time to sit and wait for the medical community to compile all the evidence in a long and drawn out manner that could take 10 - 20 years. During which time many people may die due to complications of thier condition.

Increasing anecdotal evidence exists the liberation treatement improves the quality of life of a large enough percentage of people who choose to undertake it that makes it worth contemplating.

For want of a better phrase "It's worth a shot".

No one is being press ganged or conned into this treatment, it is a free choice that we take in the full knowledge that the people undertaking this procedure are still learning it and that the long term effects have yet to be quantified.

We read as much as we can, ask as many prudent questions as we can and those of us already booked into the system will report as much as we can in an effort to get the information out into the big wide world.

Every day I watch Emma struggle with the normal things in life, over months and years she is gradually declining. She does not have the time to sit tight and wait for all the i's to be dotted and the t's crossed, she needs whatever help she can get.

This will have cost us around £8,000 to £10,000 when it's all done. Fortunately I can afford that without having to borrow money and trust me I've done far more dumb things with £10,000 than a private medical procedure.

I'm spending this money for Emma in a hope that it improves her quality of life, if this is a "Cure" for newly diagnosed patients then great - but it will never cure Emma, too much damage has been done. But if it improves her quality of life and arrests progression, then in my mind it's worth £100,000.

Some people are too far along in thier progression that "choice" is no longer an option - having liberation is almost a necessity as so far everything else they've been offered has failed in almost every way.
Last edited by EJC on Fri Dec 24, 2010 3:55 pm, edited 1 time in total.
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Postby CaptBoo » Fri Dec 24, 2010 10:21 am

Thank you EJC, excellent post.
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Re: Have we been thrown dust into our eyes?

Postby fogdweller » Fri Dec 24, 2010 12:38 pm

Leonard wrote:Neurologists keep on stressing that also people without MS have venous strictures in the neck. I am sure this is true, Zivadinov and others found this as well, although percentages largely differ.. But this is confusing the issue.

Isn't the right question: what happens to those who do have MS (and incidently - perhaps I should say almost fortunately - also have the venous blockages), what happens to them if these blocked veins are opened and oxygen and glucose rich blood can flow through the brain?

Therefore, have we been focussing for too long on the wrong question?


Dr. Sclafani is now taking that position, I think. http://www.vimeo.com/17889703

I have been saying since a year ago October that if I had inadequate drainage from my brain because of a venous stenosis that could be relieved, I wanted it treated whether or not it had anything to do with the MS, and that rationally my health insurance should pay for that treatment. Logical and contractually correct, but so far no luck.
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Re: Have we been thrown dust into our eyes?

Postby scorpion » Fri Dec 24, 2010 12:48 pm

fogdweller wrote:
Leonard wrote:Neurologists keep on stressing that also people without MS have venous strictures in the neck. I am sure this is true, Zivadinov and others found this as well, although percentages largely differ.. But this is confusing the issue.

Isn't the right question: what happens to those who do have MS (and incidently - perhaps I should say almost fortunately - also have the venous blockages), what happens to them if these blocked veins are opened and oxygen and glucose rich blood can flow through the brain?

Therefore, have we been focussing for too long on the wrong question?


Dr. Sclafani is now taking that position, I think. http://www.vimeo.com/17889703

I have been saying since a year ago October that if I had inadequate drainage from my brain because of a venous stenosis that could be relieved, I wanted it treated whether or not it had anything to do with the MS, and
that rationally my health insurance should pay for that treatment. Logical and contractually correct, but so far no luck.


First we need to establish what is "inadequate drainage". Has anyone stated what that means?
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Postby Cece » Fri Dec 24, 2010 12:57 pm

I'm not sure whose results these are from, they are unpublished and word-of-mouth from Joan and yes you can dismiss them for those reasons, but she has been saying that the ratio of blood flow in the brains of healthy people as opposed to pwMS is 2:1.

That's worse than I thought it would be. Anyway once that proves out and is linked through pre- and post-procedure tests to the outflow obstructions of CCSVI, that will suffice as proof of inadequate drainage.

This is so simple, anatomical, and provable.

fogdweller, your insurance is fighting the claim? :(
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Re: Have we been thrown dust into our eyes?

Postby bruce123 » Fri Dec 24, 2010 12:59 pm

scorpion wrote:First we need to establish what is "inadequate drainage". Has anyone stated what that means?


I beg to differ.

First, we need to help those suffering with this terrible degenerative disease by using a safe procedure that has been shown to help many. If we can establish what inadequate drainage is at the same time, that's great.

Bruce.
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Re: Have we been thrown dust into our eyes?

Postby garyak » Fri Dec 24, 2010 1:39 pm

bruce123 wrote:
scorpion wrote:First we need to establish what is "inadequate drainage". Has anyone stated what that means?


I beg to differ.

First, we need to help those suffering with this terrible degenerative disease by using a safe procedure that has been shown to help many. If we can establish what inadequate drainage is at the same time, that's great.

Bruce.


Bruce is right. Scorpion, it's pretty obvious to me that reflux due to vein malformations and stenoses creates inadequacies because the veins are inefficient in their function regarding blood drainage. This, by the very nature of blood flowing in the wrong direction that is reversed with venoplasty, is why your idea of establishing adequate drainage first is not necessary . When just fixing the reflux creates significant improvements in quality of life issues in so many pwMS ( myself included ) it makes sense to just give patients this safe procedure .
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Postby Loobie » Sat Dec 25, 2010 8:05 am

EJC's post is spot on if you ask me. ONLY looking down one rabbit hole has gotten us no where. Now we have all the turf wars about whether it's neurological or venous. I am just so fucking sick of all that it's not even funny. WE DON'T HAVE TO PICK A SPECIALTY FOR IT TO BELONG TO. All I know is I have MS and it affects my entire, fucking body. We are not a bunch of independant functional systems. As a matter of fact, our body is one huge symbiotic system. NOTHING works only by itself. What happens when you isolate your heart and put it on the table? Nothing in our bodies works just by itself. What happened to MD's just being "Doctors"?

The neuros have taken this disease and it's 'theirs'. I have a hot news flash for them. It's Ours; the patients. They need to quit the turf wars over who owns it, realize that the patients own it, and move forward. Until that day comes that someone steps up and builds a bridge betweent he IR's, the neuros, the vascular docs and everyone else, we are blowing smoke up our own asses to think we are really going to get anywhere. It's too bad that the only doctors that can claim to be MS specialist are neurologists. So far all we really have concrete is that it's a condition of unknown etiology. The neuros are never going to figure it out on their own. Something triggers our immune system to do what it does. That's when it becomes overtly neurological. Until we know what triggers it, we are just foolish to think only looking at it vascularly is going to work any better than only looking at it neurologically.

The medical establishment needs an enema worse than Washington DC and all we seem to do anymore is want to play "I'm right". You're either a CCSVI opponent or a naysayer. I think we've come to that by watching the left and the right try and be all things. "We're 100% right and the conservatives are 100% wrong" and vice versa. Guess what? As in all things, NOTHING is that black and white. We need to 'unpolarize' MS research and get the douchebags to work together. Until then, we will continue to remain fucked. :?
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Postby EJC » Sat Dec 25, 2010 8:18 am

^^ What that man says, I'm also getting a bit sick of the nitpicking sanctimonious pricks that continue to want belt and braces information for every single minutia of breakthrough.

It's people that put their hand in their pocket and take a calculated risk that drive this kind of research forward, otherwise where would be still? Listening to a bunch of Nueros with a god complex pushing drugs they are on a "commission" to prescribe.

If I'm paying over the odds to be at the front of the queue, then so be it....Time is money with MS.
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Postby Leonard » Sat Dec 25, 2010 10:58 am

Thank you for your reactions.

Neurologists call the ccsvi concept a hoax, irrational. I believe with EJC (reaction above) that the process of unravelling a whole set of ill-understood diseases has just started. Where the thinking behind ccsvi could be right, damn right.

Neurologists will claim that what they have done over the last 50 years is rational. You could hardly imagine anything else, given all the brainpower that was behind. But they could be wrong, damn wrong.

Now we may have MS and our cognitive capabilities may be impaired by this shit disease, but I believe the thinking model behind ccsvi is as good as that behind the EAE model which, after 50 years, still remains a hypothesis. Our understanding of what is the meaning of rational is as good as theirs.

I tend to agree with Looby the front lines are lining up. This may lead to a stalemate and we may loose valuable time. It is most important for all pwMS that we do not freeze the situation. And build on the growing dynamics i.e. in the vascular world. And at the same time that we try to build bridges to other sectors including the neurologists.

Last week I tried to do this with my own neurologist who I had learned to know as an honest and devoted doctor but badly failed. The word 'irrational' was mentioned several times. Perhaps we need the help of psychologists, military strategists or diplomats or even politics to break the looming stalemate and clarify what is rational.
Last edited by Leonard on Sat Dec 25, 2010 11:49 am, edited 1 time in total.
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Postby EJC » Sat Dec 25, 2010 11:27 am

This is it exactly, lets stop the idea that for some reason we all think that CCSVI is "The answer" I'm intelligent enough to understand you very rarely hit the bullseye first go....

However it's the out of the box thinking that has completely blown existing theories out of the water.

In the short time I've been aware of CCSVI focus has already changed from stenosis to include vein malformation as the actual cause of the stenosis...it will evolve and continue to evolve as understanding evolves.

Emma is a willing ginea pig in this evolution until the bureaucracy of the exist government funded medicine slowly (at glacial pace) decides this is something worth throwing taxpayers money at (as opposed to banks)....never mind the small matter that it could save $billions in wasted money to big Pharma.
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Postby Loobie » Sat Dec 25, 2010 12:30 pm

This is a good talk we are having here. Putting all your eggs in one basket not being a good idea is a cliche for a reason. Now I did it when I had the surgery, but that doesn't mean that I won't do other stuff to. It is funny to watch people react to a point. Emotional attachment to a theory is the reason we are in this mess. It is simpy too ego driven. I agree with Leonard that using 'referees' of some sort would be awesome. However, that falls right into the realm of 'it will never happen'. It's too bad because we are caught in the middle, but at the same time, I think CCSVI has enough steam to make it need to be investigated further. I just wish they'd all collaborate.

Now wouldn't that be nice?
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Postby Leonard » Sun Dec 26, 2010 4:42 am

Loobie wrote:.. but at the same time, I think CCSVI has enough steam to make it need to be investigated further. ..



I agree, a dynamic is developing from within the vascular community. That may become very powerful. See for instance
http://www.theglobeandmail.com/news/nat ... le1811072/
quote from the article: Are you monitoring other studies around the world?
Yes, I was in New York last week at a big vascular meeting and had a lot of exchanges from colleagues from all over the world. And what I understand that there is the intention to submit different ethical, quality controlled studies for approval regarding diagnosis and treatment. I think this is very interesting. This is fantastic to me because of the [studies’] non-profit status.

In this context, it is sad to hear neurologists talk about money as the first thing on their mind ...

In the same article, and also in recent news release from a Dutch MS professor, epidemiological studies are proposed by the neurologists. I am less convinced about that instrument for this purpose. If they woudl want to see the correlation with venous abnormalities and pollution, it might be.
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