Not a cure... what is ccsvi then?

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

Not a cure... what is ccsvi then?

Postby nicko » Mon Jan 25, 2010 11:10 pm

I've read it time and time again that CCSVI is not a cure. But from numerous papers I've read if the CCSVI is successfully repaired with surgery. The progression is stopped in its tracks. This isn't 100% proven but it pretty much seems that way.

Dictionary definition of cure: A cure is the end of a medical condition. The term may refer specifically to a substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps a person suffer. It may also refer to the state of being healed, or cured.

Why exactly is this not being considered a cure?

A. Because it does not reverse damage from years of progression.
B. They don't know why the CCSVI condition happens in the first place. Surgery is only correcting the outcome of another condition.
C. The MS symptoms may remain stable but the CCSVI condition may continue to degrade needing continual monitoring/repair.

Zambon's research only showed a 50% reduction in relapses. But his technique of using a balloon to open the veins is only 47% effective. So if he used stents would his reduction in relapses be much much higher???

If its proven, that when CCSVI is corrected with surgery that the MS progression is stopped. Wouldn't that fit under the definition of a cure?
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Postby costumenastional » Tue Jan 26, 2010 12:11 am

You bet.
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Re: Not a cure... what is ccsvi then?

Postby frodo » Tue Jan 26, 2010 2:58 am

nicko wrote:I've read it time and time again that CCSVI is not a cure. But from numerous papers I've read if the CCSVI is successfully repaired with surgery. The progression is stopped in its tracks.


CCSVI is a condition, not a procedure. It cannot be called a cure.

The cure of CCSVI (stenting or angioplasty) cannot be considered a cure for MS either. MS is the presence of scars in the brain, and they will not dissapear even if curing CCSVI we stop the development of new ones.

For sure it can be said that stenting/angioplasty cures some sympthoms associated with MS (fatigue, relapses) but not MS itself.

But anyway, being MS a consequence of CCSVI, the important to cure the second and let the brain to cure itself as much as possible.

EDIT: After all, who cares about MS? The condition that causes our problems is mostly CCSVI.
Last edited by frodo on Tue Jan 26, 2010 11:20 am, edited 1 time in total.
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Postby Billmeik » Tue Jan 26, 2010 9:09 am

there is confusion between MS and the sympyoms problems MS causes. If ccsvi is right and you get the operation, you have no more MS progression (hopefuly) but the old symptoms caused by MS are still there. Id say the MS is cured, but who am I.?
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Postby cah » Tue Jan 26, 2010 9:21 am

There is this medical term, "persistent defect after healing".

Maybe that fits best.

In my words that is:

The desease is called "inflammatory". To depict it, even if you extinguish the flames, there still might be things that are burnt. But it is much easier to start rebuilding something that isn't burning any more, isn't it?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby cheerleader » Tue Jan 26, 2010 9:56 am

congenital venous malformations can cause a variety of vascular situations. There is no cure for stroke....there is prevention, diagnosis of a vascular disorder, and treatment (sometimes surgical)

But once you have had a stroke, it is only thru plasticity, physical therapy and rehab that function can be regained. Time is of the essence.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Jan 26, 2010 10:03 am

Good analogy with stroke, cheer. There are a lot of stories of stroke patients, even relatively old people, having amazing recovery of function with physical therapy. The hope for MS patients is that IF treating CCSVI does stop (or significantly slow down) MS progression, then maybe our own brains will heal themselves, with a little help from us, LOLOL.

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Postby SCGirl » Tue Jan 26, 2010 10:04 am

So, is there ANY chance of me getting this procedure done?? I have tried to contact Stanford and Buffalo via e-mail.... to no avail. Any help?
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Postby AlmostClever » Tue Jan 26, 2010 10:06 am

Big Pharma will have no problem developing new drugs to help MSers cope with their symptoms and disabilities.

Maybe this will help draw their (and the Nueros') fire away from CCSVI as they realize a new and lucrative line of drug products. Win-win situation! Let us hope and pray!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby cheerleader » Tue Jan 26, 2010 10:54 am

AlmostClever wrote:Big Pharma will have no problem developing new drugs to help MSers cope with their symptoms and disabilities.

Maybe this will help draw their (and the Nueros') fire away from CCSVI as they realize a new and lucrative line of drug products. Win-win situation! Let us hope and pray!


one might wonder why Ampyra received FDA approval so quickly this year...

Ampyra could stumble
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby patientx » Tue Jan 26, 2010 11:05 am

Why is this man reporting on medical matters?

David Phillips has more than 25 years experience on Wall Street, first as a financial consultant and then as an equity analyst for several investment banking firms. His work has been cited as "Must-Read" by Kiplinger's Personal Finance, Washington Post (May 2009), and by BusinessWeek.
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Postby paulmur » Tue Jan 26, 2010 4:42 pm

The man is reporting on MS because on Wall St. MS is a market, not a disease.

Also, I have been noticing that a number of drugs have popped up and been given press since Jan 1. This may be a very positive sign. If the drug makers have conculded that ccsvi and surgery are real contenders, they'd want to beat it to the punch and make some of their research dollars back before they get overshadowed. Other than stent manufacturers I don't think any one making money on MS stands to gain.
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Postby Lyon » Tue Jan 26, 2010 7:17 pm

.
Last edited by Lyon on Mon Nov 21, 2011 8:47 pm, edited 1 time in total.
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Postby patientx » Tue Jan 26, 2010 9:02 pm

Lyon wrote:
patientx wrote:Why is this man reporting on medical matters?
I "get" and enjoyed the deliciously cynical, with just the right hint of ironic humor post, but sadly humor is not understood over here.


Why, whatever do you mean?:wink:

If I wanted to be ironic, I might point that at least some who have had the CCSVI correction procedure (and Zamboni said the same in his last publication) are still using those despised MS drugs.
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Postby paulmur » Tue Jan 26, 2010 10:12 pm

Oh did I miss that subtlety? Sorry for the naive opinion, you went way over my head. Chalk it up to fog. But I do think market analysis taps yet another source to consider when hedging a bet on your own disease.
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