Misguided speculation

[Cece]

So far, i havent seen a trend, but i am hoping that one will emerge if we can get some answers from those who do not respond.

We have a sticky thread of people who do not respond (pklittle's thread). I hope you do not mind if I take the liberty of copying your questions over there and seeing what responses we get. I think what we're looking for is to set aside those whose failure to respond was due to clotting, since that is a complication, and looking specifically at those who it would seem had everything done right but did not respond.

[scorpion]

Ok so everyone wants a skeptic thread so we do not ruin the "tone" of the forum and now if you saw no improvements you are relegated to the "Pklittle" thread??? That means the only new threads that will appear on here are ones where the liberation procedure was perceived to have worked and threads that discuss why CCSVI is the real deal?

[drsclafani]

Ok so everyone wants a skeptic thread so we do not ruin the "tone" of the forum and now if you saw no improvements you are relegated to the "Pklittle" thread??? That means the only new threads that will appear on here are ones where the liberation procedure was perceived to have worked and threads that discuss why CCSVI is the real deal?

yes, i agree with scorpion's opinion but not his "drama" about conspiracy. It is right that asher hold on to his thread; the man has earned it.

[Cece]

Scorpion, this thread will get buried sooner or later, the reason that one is stickied is because everyone agreed it was important to keep track of these sorts of stories rather than let them get buried.

Here is what Asher wants to discuss:

I am however pointing to the 'religious' rather than fact based language that characterizes the CCSVI debate.

I haven't noticed much religious language personally. But I might not be the one to ask.

[Robnl]

Suppose we are still in the process of discovering CCSVI.....what can be said about results or treatment options??

Ofcourse it's sad if there are no improvements....and you cant explain why???

things are just not clear, fact pr proven......time will tell, but do we have time???

Rob

[Billmeik]

proceeding incrementally is good way to work on problems. Making intuitive leaps and using science to test them is another way. Just have faith in the guess until it is proven right or wrong, not steamrolled.

[Nasti]

Thanks for this, Asher. I think I've been trying to find excuses for CCSVI all over this site so as to approve the existence of my b**** stent in the neck which hurts like hell at times... The same story with me, now I relapse every 2 weeks, I haven't been worse before. I even think that maybe I did something more harmful by opening the veins... (that bad I feel).
Whatever this did to the body and the illness, it can't be compared to what it did to my mind. I'm thoroughly confused. I used to KNOW that I'm sick of an incurable disease. Now I don't know a thing, I just know that I have more stuff that hurt me and prevent me from being able to do the simplest things.
I would agree that it was the placebo most powerful that fooled us. I even had a placebo from my exploratory angio, but I am aware of it only now.
And the setting and the resetting of the parameters in mind...soo, soooo pathetic, devastating and bncjsbi. I think you know what I mean.

[concerned]

proceeding incrementally is good way to work on problems. Making intuitive leaps and using science to test them is another way. Just have faith in the guess until it is proven right or wrong, not steamrolled.

This might be a subtle example, but I feel it illustrates the religious attitude being discussed in this thread quite well.

[Asher]

Dear Dr scalfani, I would be obliged. I'll put an answer together. Kind regards and Thanks for your commitment.

[Cece]

proceeding incrementally is good way to work on problems. Making intuitive leaps and using science to test them is another way. Just have faith in the guess until it is proven right or wrong, not steamrolled.

This might be a subtle example, but I feel it illustrates the religious attitude being discussed in this thread quite well.

We had our share of Christmas Miracle threads recently too.

[CureIous]

This thread will get buried sooner or later, the reason that one is stickied is because everyone agreed it was important.

Here is what Asher wants to discuss:

I am however pointing to the 'religious' rather than fact based language that characterizes the CCSVI debate.

I haven't noticed much religious language personally. But I might not be the one to ask.

Good grief, I think it's a GREAT idea to relocate this (discussion) to the existing PERMANENT IN YOUR FACE RIGHT THERE FOR THE CLICKING thread, don't think anyone said "delete this one" or "don't post on this". Talk about an overreaction, this gets brought up every single time someone posts their negative experience and the atmosphere created as far as "just don't even think about replying with any possibilities or you are in denial and a religious zealot" is a real turn off, who wants to get their brains beat in just trying to help someone? I had my own suggestions but no way am going to post on here, what's the point, God bless and hope for the best and keep it at that.

Anyone can post to any thread anywhere any time so what's the problem? I think it's a great suggestion, or we can just let this thread go down to page 27 where no one talks about it, and I do think we should be talking about it, a lot.


And for the record, some of us don't *NEED* CCSVI to be true out of some last desperate grasp or anything like that, as it relates to me, all that talk is irrelevant at this point in time, no reason to be here at all quite frankly, no reason to defend CCSVI either, I could NOT mention CCSVI for the rest of my natural life and just enjoy what I have, presuming the next year is as great as the last of course, but as for today, still doing great and not apologizing for it, but some of us want to stay in the fray and help where we can however we can out of a sense of responsibility to our fellow MS sufferers. For those of us that have been here since the start or thereabouts, we've seen ALL the timelines in sequence as far as how things have played out, and in this world, context is everything.

That means some of us KNOW that there is much we don't know, even now, but the knowledge base is growing. How much talk of valves was there a year and a half ago? Very very little. It was all about stenosis and nothing but. Sure, there was stuff in there from Zamboni about valves etc but it had nowhere near the prominence nor discussion that we lob back and forth now. Simka was talking about lower issues affecting upstream flow (and consequently stenosis upstream) before it was even being discussed in the US. Hello fluid dynamics. This is great though, for some it will mean treating the down low will affect the up high.

But, we are still lacking worldwide in trained US techs that can color trans cranial doppler us on a consistent basis. Dopplers are great but just like venograms, too many variables in interpretation, operator skill and the like.

I'd be happy to post up my ultrasound pre-op, from a very experienced tech who did mostly neck flow US's day in and day out, THOUSANDS of them. If that particular yardstick was what measured my pathology pre-op, and subsuquently the improvements post op, they would have concluded that not only did I NOT have anything wrong with the flow in my jugs, but neither did the treatment do anything to improve it.

University level highly experienced sonographer with wand failed to even find a TRACE of what you see in my video. And that, is okay, I expected her to find nothing pre-op, when she said "looks clean, I see nothing wrong here", I just smiled and wished her a nice day...

Nothing like a fresh set of eyes with the proper tools.

[EJC]

Of course we are all assuming that every centre perfoming this procedure are equally capable, all looking for the same thing and all treating in the same way, which of course they aren't.

There are an infinite number of patients with an infinite number of stages of MS, attending an ever increasing number of centres offering procedures that vary in sublte ways.

So straight away you have thousands of possible variables of what may or may not work.

Of course this wonderful invention of the internet makes it much easier for patients to communicate and compare notes. Over a period of years I belive it will become apparent that certain centres are producing better results than others. Studies will then concentrate on what they are doing right and what's being done wrong elsewhere.

The thing is, right now, no one actually knows who's going to do this right ans who isn't. So it's all a bit of a stab in the dark.

We made our decision on which centre to use based on the fact they were the only one offering treatment in the UK. We didn't want to travel abroad.

Others chose the centre that charges least, others on recommendation.

Before we even start compiling statistics how do we even know who's got the right idea?

[CCSVIhusband]

Of course we are all assuming that every centre perfoming this procedure are equally capable, all looking for the same thing and all treating in the same way, which of course they aren't.

There are an infinite number of patients with an infinite number of stages of MS, attending an ever increasing number of centres offering procedures that vary in sublte ways.

So straight away you have thousands of possible variables of what may or may not work.

Of course this wonderful invention of the internet makes it much easier for patients to communicate and compare notes. Over a period of years I belive it will become apparent that certain centres are producing better results than others. Studies will then concentrate on what they are doing right and what's being done wrong elsewhere.

The thing is, right now, no one actually knows who's going to do this right ans who isn't. So it's all a bit of a stab in the dark.

We made our decision on which centre to use based on the fact they were the only one offering treatment in the UK. We didn't want to travel abroad.

Others chose the centre that charges least, others on recommendation.

Before we even start compiling statistics how do we even know who's got the right idea?

From personal experience, I'll second what EJC says about skill level of doctors being VERY important.

My wife had her first procedure done at a world class hospital by a world class doctor. (one of the best in the US - one you haven't even seen liberations happening at).

She had her second by a different doctor - because we suspected there were some things missed in the first procedure - not necessarily re-stenosis, just missed. Sure enough. We were right.

The 2nd doctor found exactly what has been being found by the leading CCSVI doctors in the world and employed the latest techniques - things that weren't known 3 months ago let alone 6 months or a year ago. (best part is he's creating a guidebook to show ALL doctors interested in CCSVI what's what, so this kind of stuff isn't missed - this way each doctor coming on board doesn't have to "re-invent the wheel" when starting up CCSVI).

My wife's first doctor was a world class doctor - make no mistake about it, you don't become a chief at a hospital like that without being ... he was just not as experienced with CCSVI.

He saw what the 2nd doctor saw and noted it, but just didn't treat it because he didn't know exactly what he was looking at (though he did treat other parts of CCSVI that the 2nd doctor agreed and would have treated).

That's why, as Dr. Sclafani says, everyone first needs to get on the same page before randomized controlled double blind trials happen ... otherwise things will be missed and the trials will set CCSVI back. (of course maybe that's what the skeptics WANT and why they are pushing so hard for randomized controlled double blind trials now).

After seeing a first procedure - which was successful, and a 2nd procedure - which was successful, by two WORLD CLASS doctors and the things the first did, and the things the 2nd did (who had MUCH more CCSVI knowledge) and knew before he even went into the veins he would find ... you can see.

The knowledge base is growing. There are experts, and there are those who are learning (though as you can see, even Dr. Sclafani is still learning).

Don't give up Asher ... or others. Don't get discouraged ... this IS going to pan out ... it's just going to take a little longer than most would like. Doctors don't risk careers for things they truly don't believe and see ... a lot of doctors are going into CCSVI for a reason (they see it and make the connections MEDICALLY between x and y (x being CCSVI, y being "MS" lesions"), and those doctors are A LOT smarter than most people on this board).

[scorpion]

Ok so everyone wants a skeptic thread so we do not ruin the "tone" of the forum and now if you saw no improvements you are relegated to the "Pklittle" thread??? That means the only new threads that will appear on here are ones where the liberation procedure was perceived to have worked and threads that discuss why CCSVI is the real deal?

yes, i agree with scorpion's opinion but not his "drama" about conspiracy. It is right that asher hold on to his thread; the man has earned it.

You have got to be joking.

[patientx]

There are an infinite number of patients with an infinite number of stages of MS, attending an ever increasing number of centres offering procedures that vary in sublte ways.

So straight away you have thousands of possible variables of what may or may not work....
The thing is, right now, no one actually knows who's going to do this right ans who isn't. So it's all a bit of a stab in the dark.

And yet Dr. Zamboni, in no uncertain terms, found cerebro venous insufficiency in 100% of the patients he examined, looking at only 3 veins; that ultrasound was 100% sensitive for detecting CCSVI; that all of the patients he treated saw improvements, at least until they re-stenosed. So, there doesn't seem there need to be any variables, and it's not really a stab in the dark - just do what Zamboni did.