This Is MS Multiple Sclerosis Knowledge & Support Community

Here is a link to the latest article in the Annals of Neurology relating to CCSVI. Lots of negativity and scare tactics.

http://www3.interscience.wiley.com/cgi- ... 3/PDFSTART


In contrast, here's Ashton Embry's brilliant response to the Annals of Neurology's previous article on CCSVI:


<shortened url>

some very good reading material

Does anyone have a link to the article that Ashton Embry is refuting, entitled "Cerebrospinal Venous Insufficiency and Multiple Sclerosis (Khan et al, 2010, Annals of Neurology)"?

It's here:

http://www3.interscience.wiley.com/cgi- ... 9/PDFSTART

I thought this was relevant: “Finally, it appears that there are very different
standards for testing established drugs for new indications
versus testing established procedures for new
indications.” (Larry Steinman, a professor of neurology at Stanford)

But is this a new indication? Angioplasty is an approved surgical procedure for occluded blood vessels. If such a blood vessel is an artery or a vein, found in a neck or a leg or near a kidney, I believe it's all the same.

The idea that the angioplasty of the jugulars will then help the m.s. in the unproven, experimental part of the theory...but an IR or a vascular surgeon doing angioplasty is not treating your m.s., he's treating your occluded veins.

I think the tone of the writing is fair. It's pretty cool how he thinks patient power is good.

The growing influence of Internet patient forums and networks in clinical research, by raising awareness of trials and helping recruitment, is illustrated by the response the institute has already received. More than 8000 MS patients are on the waiting list for the new Attribute authorship to Kurt Samson, Dr Zivadinov said.

In the brains vs veins battle he's definitely on the brains side. Part of a growing voice that will try to prove ccsvi a symptom of ms. As patients our job is to make sure this is proven because its right not because ineuros try to prove it harder. For example the animal study on mice might be wrong because the animals dont live long enough to develop lesions.

I really think, and I'm saying this aside of every anger, sarcasm or irony, that a severe lack of professionalism lies in the fact that there isn't a single angiologist, vascular surgeon or interventional radiologist on board in this paper. It's just neuros talking about veins, angioplasty and about the shortcomings of doppler ultrasound. It's like your dentist is criticising a new way to treat toe fungus.

Cece, perhaps angioplasty is VERY new to a neurologist.

Just a few quick points:

I thought the article was actually encouraging, as the CCSVI theory was not dismissed outright, but was treated as a viable hypothesis that needs to be fully researched.

The one mistake the article does make, though, is not establishing the difference between the liberation procedure, which is primarily a balloon angioplasty, and the stenting procedure used by Dr. Dake, which carries with it more possibilities of serious complication.

The article didn't denigrate the idea of CCSVI, and by stressing the need for more research it acknowledges the scientific credibility of the idea.

Unfortunately, research takes time, and time is a luxury that many of us feel we don't have. As we move forward making decisions about treatment options, it's important to remember that endovascular surgery in the CNS venous anatomy is largely unexplored territory, and it may be advisable to take a more conservative approach (balloon procedures) rather than a more aggressive attack (stenting procedures).

Either way, both of these procedures are not without real risk, and patients who are in a less progressed state of disease might be wise to wait the 6 to 12 months for further research results to confirm or refute certain aspects of the theory and the various procedures used to address them.

For those of us who are in the more advanced stages of the disease, a roll of the dice might be in order. As with all risky ventures, a sober assessment of the risks involved should be a prerequisite to any decisions made.

Interesting times, these...

marcstck wrote:Either way, both of these procedures are not without real risk, and patients who are in a less progressed state of disease might be wise to wait the 6 to 12 months for further research results to confirm or refute certain aspects of the theory and the various procedures used to address them.

Isn't 6 - 12 months an unrealistic figure? I think we are talking 2 - 3 years. Buffalo's imaging studies will release more figures between now and then, but all the treatment studies that have been announced have not yet begun.

cah wrote:Cece, perhaps angioplasty is VERY new to a neurologist.

Lol, you have a point.

Cece wrote:I
The idea that the angioplasty of the jugulars will then help the m.s. in the unproven, experimental part of the theory...but an IR or a vascular surgeon doing angioplasty is not treating your m.s., he's treating your occluded veins.

Not really. IRs wouldn't do surgery or angioplasty just to clear a stenosis unless they believed that doing so would result in some medical benefit. The doctors who do it for CCSVI patients do so because they believed that it wil beneficial MS. Unfortunately that connection is still unproven.

I don't know but I suspect that is what happened with Dr. Dake. Stanford hospital may have told him they were not going to let him do anymore porcedures (especially since some serious risks, including one emergency open heart surgery) had resulted since he was doing them to address a problem that had not been scientifically shown to be helped by the surgery he was doing.

Those of us that beilieve that CCSVI is indeed a causative factor in MS have to admit that at present there is no established scientific evidence that this is true Our medical system is built on practicing scientificly bassed medicine, so it is critical that we get some concrete, objective, scientific evidence. But I believe that is coming soon. And with it will come widespread availability, insurance reimbursement, new research directions, and all kinds of good stuff.

You're right Mark. I agree with you.

I don't know what to make of the "Annals of Neurology" article... it jumps around alot, doesn't track (conflicting statements) and is mostly negative. I'm really not feeling the patient "protection" as much as I'm sensing "protecting" ones own best interests......

I'm somewhat confused, which doesn't take much, but did the "editor" write this piece? An Author is not credited... if not the editor, then who?? Can you imagine either Steinman or Dunn writing this and "quoting" themselves... how pathetic.

also, Lawerence Steinman is listed as a 2010 reviewer for the Journal - conflict of intrest, perhaps?

http://www3.interscience.wiley.com/cgi- ... 8/PDFSTART

I find it quite unusual that most, if not all of the Journal requires a subscription but this particular NERVECENTER doesn't??

The Stanford neuro's may have stopped Dake from doing procedures, but not from talking/presenting his findings and consulting.. He is friends with Dr. Mehta in Albany, NY who is on track to begin testing / treating in March....

The Article in the Annals of Neurology says towards the end that Dr Zamboni said in his new paper (J Vasc Surg)"there was very little improvement in patients,and it calls for caution – a reasonable approach."

Is the Article saying that Dr Zamboini now states that CCSVI treatment shows very little improvment in patients or is it that I am misreading the Article.

Opera wrote:The Article in the Annals of Neurology says towards the end that Dr Zamboni said in his new paper (J Vasc Surg)"there was very little improvement in patients,and it calls for caution – a reasonable approach."

Is the Article saying that Dr Zamboini now states that CCSVI treatment shows very little improvment in patients or is it that I am misreading the Article.

This is not a quote from Dr. Zamboni- that is Zivadinov's quote. None of Dr. Zamboni's patients have had relapses or progression, as long as their veins remain open. When Dr. Zamboni used angioplasty on MS patients in relapse, the relapses ceased within four hours-four days. Many patients had improvement in fatigue, headache, spasms, bladder control, sleep and other improvements.

These neurologists have focused on all of the negatives, without acknowledging the overwhelming evidence of the connection of venous insufficiency and MS progression. It is because of me that Dr. Dake got involved, and it's hard to read this...because I did it for my husband, and he is relapse and progression free, awake, working, living and healthy. It breaks my heart that two wonderful human beings had horrific complications (one directly connected to the stent procedure)...but that does not change the fact that Dr. Zamboni has discovered a remarkable connection of the veins and MS. As Marc said, Dr. Zamboni's angioplasty had no such complications, although restenosis occurred in almost 50% of the jugular veins.

There is more to learn. Scaring patients away from this discovery does not do justice to the revolutionary connection of CCSVI and MS.
cheer

and of course the neuros do extremely dangerous things too. Here's a test: Is the sickest you've ever been because of a bad medicine or because pf ms? I once did a sleeping pill that was wrong for me and passed out on the stairs. Nearly cracked my head. Others I've talked to had bouts with chemo drugs or others that nearly killed them. Lets get real. Getting better is risky like crazy.

Thanks for clarifying my confusion Joan , re the article in Annals of Neurology.

Just for my clarification,, I am wondering on what basis Dr Zivadinov said there wasnt much improvement in patients with CCSVI treatment when his Institute is now offering testing on a paid basis.