This Is MS Multiple Sclerosis Community: Knowledge & Support

ok this is the place to voice opinions in the debate of today: what causes ccsvi? Is it congenital venous malformations, or is it caused by ms?


Several of the papers from the last ectrims found worse ccsvi in patients with worse ms.This would back the idea that ms causes ccsvi.

Simka didn't find this and as far back as 1990 zamboni studied children with ccsvi and 90% of them went on to be diagnosed with ms. There are cases on the books where ccsvi has been found and the patient has gone on to develop ms.20 dake patients with 1 year mri's that show no progression back this side.

This debate is absolutely key. it needs to be resolved before science finally says full steam ahead on ccsvi.

HOW exactly?

Maybe worse CCSVI causes worse MS ... there's a double edged sword there ... you can't just pick one side and say x causes y ... when y could cause x.

Just because it's worse doesn't prove that one causes the other ... there has been nothing to prove cause yet. If you want to do that, start looking at teenagers diagnosed with MS and see if they have CCSVI.

Again, my wife was treated for CCSVI before she was diagnosed with MS ... how could that possibly happen IF MS causes CCSVI?

Oh ... and in her case ... she had BAD CCSVI ... but has mild MS ... in my wife's case it disproves the theory of MS causing CCSVI ... but leaves open the point that CCSVI + time = MS ...

In my mind these facts would support the theory that CCSVI is a symptom of MS. Otherwise if CCSVI caused MS, her severe CCSVI would cause severe MS. Maybe MS + time = CCSVI.

Not necessarily Bilmelk. It could be that CCSVI is a consequence of MS but yet CCSVI does not effect the clinical outcome of the disease. For example CCSVI could be the result of MS much like optic neuritis, bladder dysfunction etc. Like many symptoms of MS,this would mean, as I believe has been shown, that the longer one has MS the worse one would expect CCSVI to become.
Bilmelk one suggestion I and others have had, which would go a long way to proving or disproving Zamboni's claims, is to send 50 people(25 with and 25 without MS) to Dr. Zamboni and have him figure out which of the 50 have MS. Very simple.

And what facts are those in your case that support that theory?

Zamboni's ultrasound techs were blinded in his study. The ones with problems had MS.

Here is a quote from Salvi's interview on CCSVI alliances website



I think the cause and effect can come later. It seems that treatment is more effective than drugs in making people feel better. The science will work itself out eventually.

Medicine these days is all about treating symptoms and not disease isn't it?

I read this and I had no idea, I am sure because English is not Dr.Salvi's first language, what Dr. Salvi is saying. This has been posted before and it would be great if Salvi or someone could clarify what he meant when he said he sent him other "patients" and that his test results "were the measure of MS". Were the "patients" instructed not to talk to Zamboni during his tests? How many patients had MS and how many did not? Without knowing the details of this study we have nothing more than someone claiming to have sent Zamboni thirty people and... well I can not really extrapolate anything else but that. Sorry.

"Several of the papers from the last ectrims found worse ccsvi in patients with worse ms.This would back the idea that ms causes ccsvi."

How does that prove MS causes CCSVI? As far as I can tell all this suggests is that CCSVI is not congenital, and that it can develop and grow worse over time. But I think you also have to question whether it is even true. Simka's data contradicts it.

The Beiruit blinded venography study found no evidence of stenosis in patients with CIS. They found virtually all long-term MSers had stenonsis.
This suggests CCSVI does not cause MS.

I realise CCSVI has personal experience of someone that had "CCSVI" but hadn't been diagnosed with MS but thus far the studies seem to be indicating in the population at large this is not the case.

I note Dr Simka concludes this as well.

I would note that either way, if CCSVI causes symptoms there will still be benefit in successfully treating.

I don't think that's exactly the case.

From the abstract presented at ECTRIMS

Yes you are quite correct

The venous and vascular doctors looking at CCSVI describe these lesions as truncular venous malformations, which form in the womb. Like all venous malformations, these grow with the body, and worsen with age. Disturbed blood flow created by venous malformations also makes them worse. It's all in Dr. Lee's paper-- I'll link it and recommend it yet again.
http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf



It is quite possible that a venous malformation would worsen with age and length of disease, creating worse CCSVI. Dr. Lee likens it to Budd Chiari, which takes decades to manifest as liver disease, although the venous malformations are congenital. The malformations included webs, stenotic veins, and intraluminal defects. It was very illuminating hearing Dr. Lee discuss this in Bologna in '09.

From the Fondazione Hilarescere press release after the Bologna conference:



It's not about stenosis...once again, "it's not architecture, it's flow"--Dr. Paolo Zamboni. The other doctors are looking at the wrong thing.

The only opinions that matter are those of the scientists capable of studying and understanding vms and those who know what to look for...Dr. Lee has spent his entire career looking at venous malformations. Dr. Gabbiani looked at the jugular vein tissue and compared it to normals. I heard them both speak...I'm going with them.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

My take, after reading all the available research, is that CCSVI alone is most likely not the cause of MS. It certainly seems to be a factor in who gets MS, but other factors also need to be present, likely EBV and genetic predisposition. Certainly, other triggers could be involved (environmental toxins, other pathogens, reactivated retroviral DNA, etc.). It could also be that MS does cause CCSVI. The research so far is nothing but equivocal. There is certainly evidence to back both sides of the argument.

In that MS is an extremely heterogeneous disease, it's quite likely that the role CCSVI plays changes from patient to patient, just as almost every other hallmark of the disease does. In some patients, CCSVI may be THE overriding factor that causes their neurodegeneration. In other patients it may play no role at all. In still others, the condition may serve only to worsen their symptoms. Likewise, there is probably a significant portion of the healthy population that has CCSVI but never develops MS (the ongoing Buffalo study indicates that about one in four healthy test subjects exhibit CCSVI).

From a patient standpoint, though, what we really need to know is that venoplasty of the jugulars, azygos, and possibly other veins relieves in some quantifiable way at least some of the symptoms of MS. The question of cause/effect can be worked out over time; what we must know as quickly as possible is whether treatment for CCSVI results in identifiable benefit of well-defined outcomes in a statistically significant population of patients, and the identification of which patients are most likely to benefit.

_________________
Marc
www.wheelchairkamikaze.com

Marc you took words from my mouth.

It would be intresting to see how degenerative process differs between MSers with or without CCSVI.



If we look at the Buffalo study preliminary results it suggest that the presence of venous abnormalities of the cerebral circulation may roughly double the risk of having MS or other neurological disease. That is nearly the same percentage that smoking has in developing MS.

So let's look at this another way.

We are given drugs to help with fatigue, spasticity issues, inflammation and a variety of other consequences with this illness. We are treating the issue at hand in each of those cases.

If CCSVI is caused BY MS, rather than a cause OF MS, then why not provide the angioplasty to treat the condition?

CCSVI exists. There is far too much data at this point to deny that fact. There are no drugs to treat the issue, but a surgical solution exists. Make it available to everyone and treat the issue- that is something that the neuros have had no issue doing with drugs up until this point.

From a non-drug perspective, most neuros will advocate physical therapy as well. So again- why not support a non-drug treatment for this issue?

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Three veins angioplastied.  One renewed life.