Neurology journal: "Have we found the cause & cure

[Cece]

Chronic cerebrospinal venous insufficiency: Have we found the cause and cure of MS?

Neurology April 13, 2011 WNL.0b013e318212a915; published ahead of print April 13, 2011,

http://tinyurl.com/3qqedr5

No access to the full text. There is a mention in a news article about what was said in this editorial:

In an accompanying editorial also published in Neurology, Fox and Rae-Grant exhorted fellow physicians to "neither jump on the bandwagon as it passes through town nor assiduously miss the parade."

http://www.cbc.ca/whitecoat/blog/2011/0 ... -go-again/

The question "Have we found the cause and cure of MS?" struck me as deliberately overstating so as to ridicule. The notion of neither jumping on the bandwagon nor missing the parade is more moderate.

[1eye]

The paper says that Zivadinov used a single, unblinded technician. See I thought all the complaints about unblinded studies were referring back to the old Zamboni work. My bad. Sorry. I feel like the unblinded are leading the unblinded.

"In Oklahoma, not Arizona, what does it matter?" -I Never Been To Spain

[MarkW]

I agree that CCSVI syndrome is not the cause or cure for MS, so what.
Does that mean we must not safely treat CCSVI syndrome ??
Neurologists are losing the debate over treating CCSVI syndrome so they are trying to move the debate to cause of MS.

My advice - stick to treating CCSVI symptoms, forgot about causes of MS, its too complex.

MarkW

[Liberation]

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[1eye]

All along I have been seeing the whole spectrum of speculation about causes and effects. What makes the most sense to you? Do not be ruled by an arbitrary opinion with no reasonable explanation, just because somebody claims their degree gives them some kind of divine right of infallibility. Does it make sense to you?

We've got brains. Let's use them. Nobody's going to hand us the answer wrapped up with a bow. If we work at it we'll feel better about our decision.

[griff]

The question "Have we found the cause and cure of MS?" struck me as deliberately overstating so as to ridicule. The notion of neither jumping on the bandwagon nor missing the parade is more moderate.

I did not get offended when I read this question, only disappointed that Zidanov's results did not confirm our expectations. Haven't most of us hoped that CCSVI is a major cause of MS? Isn't Zinadinov among the first ones who embraced CCSVI? We should clear out what we are treating with these operations in order to treat only those who most likely benefit from the operation and leave alone those whose problems can not be aliviated by this operation.

I think this whole thing is getting really messy as we saw improvements not just in fatigue but also in motor functions; however, we have not seen anyone who would have benefited from the procedure after one year. We also saw lots of complications and regrets after the operation.

My neurologist's sentence pops into my mind: "he has already seen so many cures for MS, but we are still here". I wish he is not right now.

[Cece]

however, we have not seen anyone who would have benefited from the procedure after one year.

Zamboni's original research showed improvements in patients at one year. This was angio only. This was also a peer-reviewed publication.

Results: Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate. Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients (P < .03), with a positive trend in SP (P < .08 ). Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.

http://tinyurl.com/43uqwh2

Dr. Dake's research as presented at ISET showed patients continuing to see fatigue improvements even beyond what they'd shown at earlier visits. This was at one year.
http://tinyurl.com/3lvmy4x

A year after doctors used either angioplasty or stents to open blocked veins of 30 MS patients, they suffered about half the fatigue, on average, than they had before the treatment, according to data being presented by Michael Dake, M.D.,

[griff]

I might be missing something, but when I read the threads here I got the impression that good guys are fighting against bad guys, just like in the fairy tales.

Don't get me wrong I still hold out hopes for CCSVI operations and I already went through one, but I know things are not black and whites.

Even dr Sclafani mentioned that he tries to get a neurointerventionalist on board with the treatment of dual sinuses, but he said that this guy is not a believer of CCSVI. We have to accept that there are well-respected professionals who have different opinion about the link between MS and CCSVI.

We should not accuse anyone of bad intention just because his opinion differs from ours. It remindes me those ages in the dictatories when you were not allowed to have a different opinion than that of the ruling party, othervise you went to jail. Reading only one side of the story is very misleading.

however, we have not seen anyone who would have benefited from the procedure after one year.

Zamboni's original research showed improvements in patients at one year. This was angio only. This was also a peer-reviewed publication.

The initial stories of dr Z were very encouraging; however, we see much more of the contrary as well. I would assume if we were all symptom-free as dr Z's wife after the procedure, we would not be here. Do not forget that with RRMS you can be symptom free for many years even without operation.

Why couldn't others reproduce his good results? If we look at the big picture, wouldn't we have as many improvements with others not getting the operation? I think these are legitimate questions raised by neurologists and hopefully we can answer them through clinical trials. I think jamit initiated a thread about collecting those who have improvements after one year, but no one was found.

I see that we got some good results from IRs, but we should value the opinion and concerns of the other side as well. I do not believe in conspiracy theories.

[MarkW]

CCSVI syndrome is:
Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage proved by reduced cerebral blood flow and increased mean transit time in cerebral MRI perfusional study.
Taken from:
Zamboni P, and Galeotti R: The chronic cerebrospinal venous insufficiency syndrome.
Phlebology. 2010 Dec;25(6):269-79. PMID 21106999, doi:10.1258/phleb.2010.009083.

Please read the basics before pretending you know about CCSVI or ask questions which take just a bit of reading on your part.

MarkW

In reply to:
MarkW wrote:
I agree that CCSVI syndrome is not the cause or cure for MS, so what.
Does that mean we must not safely treat CCSVI syndrome ??
Neurologists are losing the debate over treating CCSVI syndrome so they are trying to move the debate to cause of MS.
My advice - stick to treating CCSVI symptoms, forgot about causes of MS, its too complex.

Liberation wrote:
I do not want to play the devli's advocate, but what is 'CCSVI syndrome'?

[Liberation]

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[Cece]

Do not forget that with RRMS you can be symptom free for many years even without operation.

This is true and it complicates things. One of the useful pieces of information I hear when people tell their anecdotal stories is the difference between what their course was and what it now is.

[Lyon]

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[MarkW]

I am not pretending about my knowledge of the combined subject. Specialist doctors know their area very well but very few are expert in veins and MS, that is the problem.
Have you really asked a vascular specialist if you should leave veins stenosed ?? Neuros say they need more info. Vascular specialists either recommend treating the symptoms or keep silent in order to avoid annoying neuros.

Good luck Liberation when you undertake your venoplasty, the key is finding an expeienced vascular specialist (surgeon or IR).

MarkW

[Liberation]

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[Liberation]

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