This Is MS Multiple Sclerosis Knowledge & Support Community

..

I'm too tired to post a reply tonight, but should't this thread be under the CCSVI topic??

Researchers found improvement with treatment on some clinical outcome measures after the intervention, particularly for the relapsing-remitting patients. In this group, 27% were relapse-free before surgery and 50% were so after treatment. That means that 17.5 of the 65 people were relapse free for 18 months before the surgey and 32.5 of the 65 people for 18 months after the surgery. No benefit was reported for people with primary progressive ms or people with spms. Those are the results. Now the problems I see with the study:

1.Tthe MRI results used different techniques, different protocols, and different study intervals.
2. It was an "unblinded" study.
3. the number of people in the study is a small number.
4. The people in the study remained on their MS medications making it possible the lack of ms progression in the "50%" was not related to the procedure itself.

I agree with you Lyon that more research is warranted. The good thing is, with other studies under way testing the validity of Zamboni's results, we in the MS community will soon know if there is anything to CCSVI or not.

You are right Shye this probably should be in the CCSVI forum. No problem here if it is bumped there.

Thank you both for your posts, it's healthy an necessary to be asking questions like this.

Many will give storys of improvement after recieving the liberation procedure, and many more will report positive findings of stenosis after being tested, but the problem with this, from the scientific perspective, is just what Lyon has stated about Zamboni's researchers finding exactly the results they're looking for:

Due to the type of study, not only is it suspect that Zamboni found the numbers of MSers with occlusion he claims but his numbers regarding the people not having MS are especially suspect because a negative finding is what the researcher wants and is so easy for a researcher wanting that result to to accept that negative result without further investigation.

And if the bais of an unblinded researcher would have the potential to produce favorable results, the potential of an unblinded patient to give favorable results when they desparately want to be cured, would be that much stronger.

I am very hopeful for the prospects of CCVIS being a great breakthrough for MS, as much of it does seem to make sense, more than most MS theories do. We just need to remember what makes sense doesn't always turn out to be the answer every time, and this is why we must continue to keep our minds open.

..

My dear God... how many times must we say that CCSVI should be treated regardless of ms...
Even phlebologists categorized it as a medical condition...

Our minds should always be open to whatever we encounter. Our hopes on the other hand cannot be controlled. I have deep reservations about CCSVI, but I still have high hopes. Is this contradictory ? Of course !! Am I caught in the enthusiasm ? You betcha !! Everyone has their own eureka moment. I am counting on the Buffalo results to be positive. That will be my eureka moment. If they are not then it has been fun and distracting from my MS to be involved in some small way. I have an appointment with an interventional radiologist next Monday, February 8. I have contributed whatever $$$ I can to the research. By the way, it is speculation that often leads to the major scientific discovers, NOT careful procedures and scientific papers. Enough said. It is the careful procedures and scientific papers that add the "weight" to ideas.

ozarkcanoer

I am afraid that you are absolutely right...

ozarkcanoer wrote:
It is the careful procedures and scientific papers that add the "weight" to ideas.

ozarkcanoer

I am afraid that you are absolutely right...

I think you guys are wrong (actually) in regards to this post topic.

CCSVI is a condition all its own irregardless of MS that SHOULD BE TREATED as it is found. YES, it may have a high correlation to MS ... and may actually be the cause of MS. But it is, for all intents and purposes right now separate.

If it wasn't being linked to MS (and touted as the Liberation Procedure) it WOULD BE TREATED as it is found, Doctors can't deny people treatment for a condition like this (do no harm). Now that someone claims it can do X and Y for people with MS is where it's getting held up.

There shouldn't have to be trials to treat an actual condition. Maybe to test if stents should be used vs. balloons ... but that's about it.

The tests should have little to do with MS. IF MS is stabilized by having CCSVI corrected, great. If not ... OK well at least your veins are flowing properly in a critical area to the body now.

i tried that approach with my doc and the first response was that there would be far sicker ppl than i needing access to whatever resources are available for testing etc.. i'll have to keep at it just to see if i can possibly get a test and find out what if anything is going on with my veins.

jimmylegs... What a cruel thing for your doctor to say, to judge you as not "sick enough" for testing and or a procedure. Who has the power to say someone is not sick enough !!! Now that makes me angry !!!

ozarkcanoer

it's no biggie oz, thanks though i will bring the idea up again next time i am there and see if i get a different answer.

I don't believe a Doctor would refuse to have you tested in anyway that would convince you / make you feel better about "any" condition.

The one who do that "does not deserve" the appellation of Medical Doctor; probably deny his oath and possibly could be sued if you prove him wrong...