This Is MS Multiple Sclerosis Community: Knowledge & Support

We'd discussed some of this before, but I don't remember seeing the full text. I can't figure out how to link it, either. There's a link on the MS Society's webpage on CCSVI: http://www.nationalmssociety.org/resear ... index.aspx


More questions than answers. Ok.

The open-minded observer sounds pretty dispassionate.... And terms like 'believer' aren't generally applied to other medical endeavors, such as varicose vein treatment, are they? Is the autoimmune theory of MS filled with believers and nonbelievers? Can I insult my neurologist by calling him a believer? Anyway. Yes, CCSVI has rocked the field of interventional radiology.

Asking if treatment of CCSVI cures MS is looking for a yes/no answer. It seems unreasonable. Who can expect treating CCSVI to 'cure' a person with an EDSS of 9? Is stopping further damage a 'cure'? What does it mean to cure a disease, in other contexts?

Dr. Dake has a lot of words, and he knows how to use them.... Diagnostic questions, yes. Pathophysiologic questions? What would those be? Questions about the pathology of CCSVI, or its role in the pathology of MS. Anatomic questions, yes. Technical questions, yes, we discuss those in Dr. Sclafani's thread frequently. Safety questions, yes. We have Dr. Siskin and Dr. Simka's safety studies to show for the safety of the procedure, although we also have adverse events that have been shared and discussed in social media.

Interested parties are embarking on collaborative controlled trials to study the outcomes of CCSVI treatment! Yes, yes, yes.

Ok.

There's that framing the conversation as involving evangelicals. If we get the word out, we are spreading knowledge of peer-reviewed published research. How is that evangelism? There are no flowers. Just research.

I think this is incorrect because a proper definition of 'cure' has not been established. If a patient with early-stage MS receives CCSVI treatment and no longer experiences MS symptoms or lesions, that may be a cure. If progression can be stopped, that may be defined as a cure. It has not been proven that this is what is happening to such people, but neither has it been proven that it is not.

Neurologists, all inflamed! Yep.

Do neurologists like being told by cardiologists that their theories lack a clear understanding of the etiology? Even when the cardiologists are completely right?

Respect! Such as by not framing the discussion with religious talk!

Add Dr. Freedman to the list too....unless he was covered by the 'strong egos,' or maybe the 'sanctimonious pontificators'?
It would be foolish to ignore the presence of vested interests, but we get painted as foolish for anything that seems paranoid about Big Pharma.

How are interventionalists ill-equipped? Interventional radiologists are the best. Interventionalists are quick learners. Give them funding, and see what they can do.

Yes, ideally there would be neurologist and IR collaboration, in any trials. But last I checked, we are not living in an ideal world. And I don't want our researchers to have to wait while neurologists come around. Full steam ahead.

I experienced this. And it is a bit overstated to say that the pharmacological disease-modifying therapies could achieve the same symptom abatement that endovascular therapy achieved. Nothing has ever been offered to me that improved my symptoms the way CCSVI venoplasty did.

This should seem obvious, yet it would seem that it needs to be stated. CCSVI research needs intellectual contributions, not roadblocks.

Ok, I had to read that one twice. Did I mention that Dr. Dake owns a lot of words? The standard measurements of outcomes established in MS literature would be reduction of relapses, QOL questionnaires, and white matter lesions as measured on MRI. But what would be the other potentially positive responses related to the endovascular management of venous obstruction? A color hue test would've worked for me! As would a vision test, since my vision improved to the extent of needing a new prescription for my contacts.

Synergistic opportunities! And I don't think that's a hidden ad for Synergy.
CCSVI + a DMD = "cure" ?

Relatively modest advantages with the current therapies? As far as I understand it, the DMDs have no impact on progression. That is modest indeed.

Our DMDs are unbelievably expensive and, by-and-large, barely work.

If the government and/or insurance companies catch on, they won't even want to fund the barely effective DMDs, and we won't even have that.

I'm getting depressed, Dr. Dake! Give me some good news.

Agreed. And I would hope research is underway that will change that 'unknown' to 'known.' We need answers.

He's talking about you, Canada....

Safe and lacking in associated serious adverse events. That would make a nice headline in CTV or WSJ.

CCSVI procedure-related complications are similar to those in other established endovascular interventions. That would make a nice headline too.

Hostility, misrepresentation or misunderstanding of CCSVI, and extreme closed-mindedness.

We do? It's not exactly our rallying cry. 'Documented correlates elsewhere in the body.' That might mean plaques in leg chronic venous insufficiency or the damage to the liver in Budd Chiari.

I would contend that outflow obstructions obstruct flow from an organ that is damaged, and that organ is the brain, and it is an important one.

Let's see what else he has to say about our contentions.

Yes, ok, I should've read ahead. This is the same as what was presented in Dr. Zamboni's 'The Big Idea' paper.

I am not sure why acquired leg venous insufficiency would be expected to occur in the same patients in which congenital CCSVI abnormalities occur. The issues in the legs may occur after a thrombosis creates an insufficient valve, unable to pump blood upwards. The issues in CCSVI occurs after birth defect of the IJV valves blocks the passage of blood flow. These are not the same patients.

Yes! I am so interested in this.

This is what Dr. Diana has been talking about as well. You can see the effects of venous obstruction in the fundi of our eyes, in 11% to 42% of people with MS. I do not know if I am among those numbers, but I would be surprised if I was not, because of my pars planitis and optic neuritis and improvements in vision after the CCSVI procedure relieved any venous obstruction.