This Is MS Multiple Sclerosis Community: Knowledge & Support

This is from the Facebook ccsvi page. The doc at Columbia is doing neuro-psych testing before and six weeks after the procedure. It is part of his IRB application. I think this is another way to look at this, maybe it will be considered more valid than QOL improvements?

I doubt that this will provide any valuable data, especially with such a high restenosis rate. By 6 weeks any number of the liberated patients could have potentially restenosed and lost any of their neuropsych improvements.

Is there any test that we can use to see if the liberation procedure works? Every time a study is released it is immediately discredited for one reason or another sometimes before the results are even released. It has been repeated on here that sometimes it can take up to six months to see improvements but now we are saying there will be no improvements after six weeks because most patients will have restenosed??

I think even if some have restenosed that quickly (or had missed CCSVI issues to begin with), many of them won't have restenosed. Zamboni put it at eight months that restenosis was most likely.

edited to correct myself: it's at eight months that restenosis peaks

Thanks for clarifying Cece. I cant speak for the rest of the "skeptics" but this is the kind of testing I have been waiting for since Zamboni released his initial results. Although we do not have details of the study it sounds like it will be objective. Thanks for the heads up.

I think this a great idea. If one looks at the usual suspects associated with cognitive impairment:

• focus, maintain and divide attention
• learn and remember information
• plan, carry out and monitor one’s activities
• think, reason and solve problems
• understand and use language
• recognise objects, assemble things and judge distances

they are capable of objective measurement by a neuropsychologist. If better blood flow improves brain function, then perhaps this is where we should be looking first before disability. Show improvement in these areas and you're off to the races. Heck, if liberation treatment shows promise in these areas even for healthy controls with venous malformations (assuming they exist in significant numbers) then buy stock in liberation treatment centers.

It's quick, too. This would be no two year study to measure improvements in MS; this is a six-week assessment to measure improvements in cognitive functioning due to CCSVI.

A list of possible neuropsych tests:
http://www.brainsource.com/nptests.htm

I think I may have started to see improvements on my PASAT (which I had every three months for 3 years on the MBP8298 trial) even at my 1 month retest. It was weird: for a short time I seemed to be able to follow the numbers being read, and answer right away without getting confused by my own voice or the next number coming up... not expecting this at all...

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Is there any test that we can use to see if the liberation procedure works? Every time a study is released it is immediately discredited for one reason or another sometimes before the results are even released. It has been repeated on here that sometimes it can take up to six months to see improvements but now we are saying there will be no improvements after six weeks because most patients will have restenosed??[/quote

"We" aren't saying anything. I'm saying that unless you verify that the test subjects continue to have open veins then the study is kinda pointless. And yes, it can take 6 months to see results, but that's assuming the person didn't restenose. Let's say for example the results show that half the people did not show any improvement. Are we just to assume that these people restenosed? The study just doesn't seem very well thought out.

Hubbard's fMRI study seemed much more accurate as it tests the day after the liberation... there is far less chance of restenosis.

These would be very significant results. If a control group of nontreated patients had no difference in their scores from initial test to six weeks later, and in a treated group half of them had measureable improvements in their scores, that would be evidence in CCSVI treatment's favor.

You're right, so are there controls in this study?

I would hope so, ikulo.

But probably not. Hmmm.

Hmmm. Zamboni already did the before/after Study. But perhaps it's useful to some extend if it's replicated.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

But there are a lot of other measures besides the ones Dr. Zamboni did. Like I have heard, there is oxygenation with some form of MRI. There is cognition. The trials seen so far have ways to measure if the procedure succeeded (like DUS), but no measurement of the 'MS' symptoms. We have patient reports, which I think are very important, but my opinion don't carry much weight. We need to somehow measure if there are any concrete improvements. I would think EDSS and QoL would count, but there should be more quantitative measures of things like heat-sensitivity, dizziness, numbness, blindness, etc. These have not been quantitatively measured before and the money supply for measuring these is slim, but they would present a better picture of efficacy. I guess that's one of the reasons Prof. Haacke was suggesting piggy-backing on an annual MRI (some people don't get these, as we know only too well what they will look like). If we find out only some 'MS' symptoms are affected, then we can get into a "symptom war" and see how things shake out.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience