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I truly question these testers. Too many folks who were tested with MRV, or Doppler and deemed Not to have CCSVI have been later found ( at another center or via venogram) to indeed have it. I don't believe everyone does but it seems that the majority do.

The only true way to know you do not have it is to have a venogram if you have symptoms of CCSVI

Yes, now that I have gone through this process, I agree. I am only one person, but my doppler only showed one "possible" problem. I went for the venogram, and sure enough, CCSVI in left IJV and azygous.

I have the pictures to prove it. It's not a question of whether there was something wrong with my veins, it's there for me, and anyone else who sees the pictures (I have not posted them yet because I am only a week out but I intend to). Now that I have actually gone through this process, these studies seem a little like someone saying someone doesn't have a flat tire because the on-board computer says they don't. Are you going to believe the computer or the fact that your tire is deflated?

Just sayin.

civickiller wrote:

scorpion wrote: or "they" need to be trained on why what they think they see is not CCSVI...

i was kinda confused by that. so your saying IR's think theyre not seeing ccsvi but they really are?

No I mean they think they are seeing it but they are really not. This is JUST a guess, but I bet if you take three different IR's and have them look at the same patient all three will come to different conclusions. Just out of curiosity I think it would be neat to have a poll of people, who have been seen by two different docotors/IRs to be evaluated for CCSVI, state if the findings did differ based on who the investigator was and if so by how little or how great(if at all).

A comparative intent-to-treat study would do the job nicely, scorpion.

So much research to be done!

Cathyb, loving the analogy of the flat tire. And congrats, hope you are feeling well.

It has been mentioned in this forum and in peer-reviewed papers that "finding the CCSVI" is operator-dependent. For instance, it is difficult to get a Doppler ultrasound signal through bone, but Dr. Zamboni's paper says that the task is eased by the probe placement directly opposite to the expected direction of blood flow, which is not usually possible. In fact, it is always possible to get a nil reading (no flow at all) by placing the probe directly at right angles to the flow. Normally, the signal is best at at least 135 degrees, or under 45.

Anyway why is anybody talking about or publishing a lot of puny little under-powered kitchen-table experiments with all heat and no light? The only thing I've seen thrown into question is the sense in going on and on.

The Lyme disease stuff is interesting. I despair that we will ever get ahead of any bacterium while water supplies and food supplies are full of antibiotics, and use of them in cattle is out of control, let alone misuse of them by people.

"Depends on what you look at, obviously,
But even more it depends on the way that you see."
-Child of The Wind, Bruce Cockburn

Anyway why is anybody talking about or publishing a lot of puny little under-powered kitchen-table experiments with all heat and no light?

They must be easy to fund and conduct?
In comparison, Dr. Dake's RCT, while fully funded, has been held up by whatever it is (uncooperative Stanford neurologists, who you would think would want it proven or disproven already, for the sake of their patients?) that is holding it up.

I don't think that is the case at all with Stanford. Go to their website and read their public advisory. It was written painstakingly as to not offend anyone.

The university is protecting its reputation by gaining a better understanding of what is supposed to be accomplished, what ccsvi really is or isn't , and whether the surgeries have benefitted those who have already had them. This caution also protects people from bad decisions and warns them of unnecessary complications down the road.

An RCT for the surgeries is still unethical at this point. Especially since no two doctors can find the same test results, and the same criteria for ccsvi is found in healthy people who do not need surgeries. The statement from Stanford is easy enough to read.

I don't think ethics is in anybody's way. I went through a two-year RCT on placebo to test a drug that didn't work. I had to be off all DMDs for 1 year before and all the time I was on it (it was not a pill). I continued my disease progression for all that time (as well as all the time up to my procedure). People die regularly in cosmetic surgeries, for which there has never been or ever will be any studies. The same is true for a multitude of procedures, surgical and otherwise.

The reason for caution is protection of livelihoods and revenue streams, not reputations. If they are covering their behinds, it's because of negative publicity, generated by people who don't want the trial to happen.