This Is MS Multiple Sclerosis Knowledge & Support Community

http://www.mult-sclerosis.org/secondary ... rosis.html

SPMS is characterised by a steady progression of clinical neurological damage with or without superimposed relapses and minor remissions and plateaux. People who develop SPMS will have previously experienced a period of Relapsing/Remitting Multiple Sclerosis (RRMS) which may have lasted anything from two to forty years or more. Any superimposed relapses and remissions there are, tend to tail off over time.

That's almost too wide of a range to be meaningful. I think the stats are that half of RRMSers have converted to SPMS at 10 years, and 80% at 20 years.

I pay more attention to age, not years since onset: RRMS tends to shift into SPMS at age forty. This is also the age, in normal folks, when the amount of myelin in the brain peaks and then begins to decline.

To follow along with this point, accumulated disability is not generally associated with RR MS as it is with SP or PP MS. Thus it is poor data from which to seek to non-associate stenosed veins and disability. One needs to include other MS groups before drawing such conclusions.

The other point (albeit not thoroughly tested) is that relieving stenoses seems to have a beneficial affect on disability and other MS symptoms. Also the theory that the stenosed veins are the product of a bad brain is challenged by those of us whose stenoses appear as malformations and are therefore congenital.

But this study does explain the differing prevalence findings in various studies. For instance the recent Dutch study they used 19 RR patients and 1 PP. And found only 50% had stenoses.

As far as I'm concerned, this study doesn't refute the possibility presented by the data that MS may cause stenoses which then contributes to disability.

Cece I also wouldn't be entirely disheartened if CCSVI did not cause MS directly. If something like 90% of LMS have CCSVI then its possible that treatment may relieve symptoms of MS even if it does not cure it per se.

As ikulo said, the study set a high burden of proof and did detect stenosis in LMS which is a step foward for this theory.

Cece wrote:scorpion, this Beirut study is essentially invalid. They looked for stenosis only and invalidated if a patient had a valve problem. But CCSVI is valve problems.

dreddk, yes, that was their reasoning, but their reasoning was wrong. I am upset at this, I want research that we can believe in, even if it came out with results in oppposition to my belief that CCSVI is causal to MS then those would be the results. Instead they are wasting their time and ours on studies that look for stenosis only and exclude valves.

Also when they exclude impressions, that is wrong too. An impression can be a result of excessively low flow in the vein, caused not by the impression (such as the carotid impression) but by those aforementioned incompetent valves lower down. When the valves are treated, the vein fills and the impression goes away, the docs have watched this in the operating room. This is also CCSVI.

Ok can anyone tell me WHAT kind of study would coclusively either rule CCSVI in or CCSVI out. I thought that the venogram being the "gold standard" was what everyone was pushing for but now that is not good enough either? I will say I am FAR from an expert on the veinuous but for a disease that can render someone in a wheel chair, unable to swallow, and blind should it really be this difficult to identify CCSVI?

Cece wrote:scorpion, this Beirut study is essentially invalid. They looked for stenosis only and invalidated if a patient had a valve problem. But CCSVI is valve problems.

dreddk, yes, that was their reasoning, but their reasoning was wrong. I am upset at this, I want research that we can believe in, even if it came out with results in oppposition to my belief that CCSVI is causal to MS then those would be the results. Instead they are wasting their time and ours on studies that look for stenosis only and exclude valves.

Also when they exclude impressions, that is wrong too. An impression can be a result of excessively low flow in the vein, caused not by the impression (such as the carotid impression) but by those aforementioned incompetent valves lower down. When the valves are treated, the vein fills and the impression goes away, the docs have watched this in the operating room. This is also CCSVI.

It's just more circular logic meant to confuse people ... and they're doing it by creating "studies" that aren't studying what they should be.

I really wish the initial set of patients, Magoo, Rose2, Cheer's husband and the like, posted more often. But there is a reason they don't as much anymore ... because they are busy living their life now! ... please, if you're new, go back and read the research and results from some of those people.

CCSVIhusband wrote:

Cece wrote:scorpion, this Beirut study is essentially invalid. They looked for stenosis only and invalidated if a patient had a valve problem. But CCSVI is valve problems.

dreddk, yes, that was their reasoning, but their reasoning was wrong. I am upset at this, I want research that we can believe in, even if it came out with results in oppposition to my belief that CCSVI is causal to MS then those would be the results. Instead they are wasting their time and ours on studies that look for stenosis only and exclude valves.

Also when they exclude impressions, that is wrong too. An impression can be a result of excessively low flow in the vein, caused not by the impression (such as the carotid impression) but by those aforementioned incompetent valves lower down. When the valves are treated, the vein fills and the impression goes away, the docs have watched this in the operating room. This is also CCSVI.

It's just more circular logic meant to confuse people ... and they're doing it by creating "studies" that aren't studying what they should be.

I really wish the initial set of patients, Magoo, Rose2, Cheer's husband and the like, posted more often. But there is a reason they don't as much anymore ... because they are busy living their life now! ... please, if you're new, go back and read the research and results from some of those people.

Just a reminder of my new disclaimer:

This forum is to discuss CCSVI. I will be respectful of others, try to not to repeat myself(alhtough this only has been pointed out as a problem when something critical of CCSVI is stated,how many times have we heard about Colin Rose??), and remain mindful of the rules of this board. I WILL post when I have a new idea or thought and I will post it in the CCSVI forum if it relates to CCSVI.However I will attempt to start new threads so that, if you know what I write may upset you, please do not click on my post. Generally I believe most of us can have a decent discussion but unfortunately some of the members on here seem to go into a tailspin when there is anything critical of CCSVI posted. Lyon, concerned, Malden,etc. may I suggest not repsonding to the few on here that conitnue to rant and rave over any thought, idea, or question we may have relating to CCSVI. I have received numerous PM's from people who believe that CCSVI is the real deal supporting keeping this board neutral and keeping this a place of OPEN discussion. If I choose to post my questions to Dr. Scalfini I will do so but what I value is the discussion I have with the people on this board.

So to show you I have lost my stinger I will respond as such:

I am very sorry that you feel what I say is jibberwocky. Anything I say regarding this topic will be potsed in a new thread so as not to develop a "cicular argument on this thread". Thank you for pointing this out.

CCSVIhusband: Does your constant denigration of the skeptics' bring anything new to the table? Is it in line with the rules of the board?

Like I've been saying, it's never going to be enough ... so I'm going to stop arguing with them ... we all see the same thing. They choose not to see it.

PLEASE!!! DO!!!

scorpion wrote:

Cece wrote:scorpion, this Beirut study is essentially invalid. They looked for stenosis only and invalidated if a patient had a valve problem. But CCSVI is valve problems.

dreddk, yes, that was their reasoning, but their reasoning was wrong. I am upset at this, I want research that we can believe in, even if it came out with results in oppposition to my belief that CCSVI is causal to MS then those would be the results. Instead they are wasting their time and ours on studies that look for stenosis only and exclude valves.

Also when they exclude impressions, that is wrong too. An impression can be a result of excessively low flow in the vein, caused not by the impression (such as the carotid impression) but by those aforementioned incompetent valves lower down. When the valves are treated, the vein fills and the impression goes away, the docs have watched this in the operating room. This is also CCSVI.

Ok can anyone tell me WHAT kind of study would coclusively either rule CCSVI in or CCSVI out. I thought that the venogram being the "gold standard" was what everyone was pushing for but now that is not good enough either? I will say I am FAR from an expert on the veinuous but for a disease that can render someone in a wheel chair, unable to swallow, and blind should it really be this difficult to identify CCSVI?

Scorpion, they first have to agree on what CCSVI is. I'm disappointed that they found valve issues and jugular agenesis and excluded them when those are CCSVI. It's really not about what type of outflow obstruction you have, it's that you have an outflow obstruction.

But I still like what dreddk pointed out, that we can compare the two groups because the same crazy exclusions applied to both. It's relative. And with so much excluded, it would have been more likely to not find CCSVI, so the findings that 12 out of 13 RR MSers of more than 10 years but not yet converted to SPMS had CCSVI by their narrow definitions of CCSVI is especially significant.

If 50% of RRMSers convert to SPMS in ten years, then the 50% that don't may have a milder form of MS and/or CCSVI or just be lucky or be diagnosed earlier and have a longer time in this stage before converting to SPMS, which as I said is typically around age forty.

I put a lot of faith in whatever direction the SIR group that met last month chose for the upcoming research of CCSVI.

I wonder about all this research that is coming out that reflects a misunderstanding of CCSVI from the start. Maybe it has been easier for us to learn because we had nothing to unlearn.

scorpion wrote:Ok can anyone tell me WHAT kind of study would coclusively either rule CCSVI in or CCSVI out. I thought that the venogram being the "gold standard" was what everyone was pushing for but now that is not good enough either? I will say I am FAR from an expert on the veinuous but for a disease that can render someone in a wheel chair, unable to swallow, and blind should it really be this difficult to identify CCSVI?

When the Doppler Ultrasound studies came out they were dismissed because they were prone to operator error, unlike an MRV. When the MRV study came out it was dismissed because it wasn't a venogram. Now that a venogram comes out, it's dissmissed because it's not a Doppler Ultrasound.

This is not how one wins friends and influences people in the scientific community.

The venogram is the gold standard. I think for CCSVI to be found there should be an obstruction or narrowing that causes backflow (or poor drainage). I think Cece's point is that anything that could create an obstruction in a neck vein should be in play such as a faulty valve. For me it should also include a venous malformation because that's what I think I have. No one wants to be left out of a study.

That being said, all these studies have to be taken into account and weighed. They each have limitations to be highlighted and each can be debated. But they each are published peer-reviewed papers. Thus far, they haven't exactly been a ringing endorsement of Zamboni's theory.

There are still many more studies to come in. So though us CCSVIers may be behind a bit in the score as far as independent validation goes (well actually a lot ) at these early stages, we're confident that CCSVI will rally and storm back for the win.

Jugular wrote:When the Doppler Ultrasound studies came out they were dismissed because they were prone to operator error, unlike an MRV. When the MRV study came out it was dismissed because it wasn't a venogram. Now that a venogram comes out, it's dissmissed because it's not a Doppler Ultrasound.

I am very happy that it's a catheter venogram study. I have not seen anyone dismissing it due to it being a catheter venogram study. The flaws are in other areas, but not that one.

Thus far, they haven't exactly been a ringing endorsement of Zamboni's theory.

Finding CCSVI in 12 out of 13 late RRMS is a ringing endorsement. Especially when it's found under such stringent exclusion criteria.

There are still many more studies to come in. So though us CCSVIers may be behind a bit in the score as far as independent validation goes (well actually a lot ) at these early stages, we're confident that CCSVI will rally and storm back for the win.

There was positive research presented at ECTRIMS too, wasn't there?

Scorpion, no need to start a new thread, you're welcome in here. We've kept it at discussion so far, not arguing, I think? I've posted a lot, I am genuinely upset that they'd undertake a catheter venogram study (our first?) and exclude valve issues. I can dig up if we've ever had an estimate of how much CCSVI is valve issues, but it's a high percentage, from what I understand.

Here is drsclafani, correcting my original misunderstanding that valves were a small part of CCSVI:

drsclafani wrote:some of the malformations are of the valves themselves. abnormal location, abnormal leaflets, fused leaflets, etc. there are other malformations such as thickend wall and narrowed or atresia (inadequate development) but i think that this is mostly a valve problem

So when I'm told that CCSVI is mostly a valve problem and then that the Beirut study excluded valves....!

http://www.thisisms.com/ftopicp-113019.html#113019

Is Dr. Sclafani wrong? I'm sure it happens sometimes, but I think it is more likely that the Beirut study is wrong.

Well, that could lead to arguing....

More Sclafani quotes!

drsclafani wrote:The valves can have many different abnormalities.
1. they can have their leaflets fused, thickened, stiff
2. They can be misplaced, misoriented, misdirected
3. They can be incomplete and result in septae, duplications, webs

perhaps you can sense, that i think there is no one size fits all solution, nor do i think that all these abnormalities will have a single feature, outcome, result of treatment

Some surely will require some form of device to hold them open, such as a stent. Some will require surgery

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

My experiences with IVUS showed me that many of the narrowings are really valvular problems. These particular problems seemed to dilate well after cutting balloons. The fused valve leaflets just tear open. other valve problems just do not go away with angioplasty.

sorry about the answer, but we will solve these questions

So in the Beirut study, if they found a narrowing that was in fact the result of a valve problem but they didn't realize it was a result of a valve problem, then it would have been included as CCSVI.

Cece wrote:Here is drsclafani, correcting my original misunderstanding that valves were a small part of CCSVI:

drsclafani wrote:some of the malformations are of the valves themselves. abnormal location, abnormal leaflets, fused leaflets, etc. there are other malformations such as thickend wall and narrowed or atresia (inadequate development) but i think that this is mostly a valve problem

So when I'm told that CCSVI is mostly a valve problem and then that the Beirut study excluded valves....!

http://www.thisisms.com/ftopicp-113019.html#113019

Is Dr. Sclafani wrong? I'm sure it happens sometimes, but I think it is more likely that the Beirut study is wrong.

Cece,

What is CCSVI if it's not an obstruction of veins draining the brain and spine.

Let's define that as CCSVI and go from there.

Does a malformed, stuck, fused valve obstruct proper drainage? You bet.

Does a missing vein obstruct proper drainage? You bet.

Does a narrowing obstruct proper drainage? You bet.

Does a web obstruct proper drainage? You bet.


But not according to this study. As I said, any researcher worth his or her salt, can conduct a study to tell you anything you want to hear about a topic. It just so happens that this is what they wanted to hear for this study. At least it admits that CCSVI is real ... now, define CCSVI ... (I think we can agree it's insufficient drainage) OK ... so did they include all possible insufficient drainage? Nope ... OK so invalid study in that respect.

And we'll wait for more studies to confirm (as Jugular said) CCSVI will come roaring back.

Do you believe Dr. Sclafani (a vein surgeon) and all the other doctors who are working on this ... or a bunch of neurologists with a vested interest in the auto-immune theory? I know where I'd lay my money if I were a betting man.

My mother can hardly make it to local doctors appointments, travel is basically out of the question.