kc
Family Member
Posted: Wed Feb 10, 2010 10:05 am Post subject: Only 55% for buffalo study?
I thought that Zamboni got close to 100% of people with ms who had stenosed veins.
While I realize that this is satistically significant I am disapointed.
kc
happy_canuck
Family Elder
Posted: Wed Feb 10, 2010 10:07 am
kc,
Those are Buffalo's results (UB not UBC). Confusing...
The press release for Buffalo is here:
http://www.buffalo.edu/news/10937
zap
Family Elder
Posted: Wed Feb 10, 2010 10:16 am
Personally, I suspect we will find that there are many ways that reflux can occur - not all will be static, constant, obvious - some may depend on posture, transient changes in blood pressure, vasodilation, etc ... the first things discovered will be the obvious cases - missing veins, total obstructions, etc, but I am pretty sure we will see more subtle mechanisms of damage as well, in time ...
Algis
Family Elder
Posted: Wed Feb 10, 2010 10:16 am Post subject:
It is only after CTEVD and it started in April; probably when CCSVI was nothing more than a rumor. Further 10% are on the limit...
So wait for MRI/MRV and more analysis. It still a more than half of MS peeps A pretty good average...
sbr487
Family Member
Posted: Wed Feb 10, 2010 10:17 am
Quote:
I thought that Zamboni got close to 100% of people with ms who had stenosed veins.
While I realize that this is satistically significant I am disapointed.
This is true. But when compared to the fact that:
1) not every MS person has same symptom
2) not every person's LP is +ve
3) etc etc
Yet these people go through the same treatment routine. So when compared to that, the above study is better. It shows a clear pattern.
The other thing is that the study might not be completely accurate or efficient. So there is always a room for improvement.
I hope in next few weeks, Dr. Z gets a chance to see why the numbers are low?
kc
Family Member
Posted: Wed Feb 10, 2010 10:29 am
Ok guys Thanks I feel better about this now. I was just shocked as I expected much higher %s.
I just posted a topic regarding getting this out to local news media. The more coverage the better.
Sorry for being a wet blanket. Lets fight now for ccsvi.
kc
cheerleader
Family Elder
Posted: Wed Feb 10, 2010 10:30 am
Dr. Zamboni did not include CIS- clinically isolated patients. He only used CDMS- clinically defined MS patients. Buffalo used CIS and children. These are prelim numbers, showing a strong association in a large group, but not as high as Dr. Z's. smaller, more CDMS group. Even without 100%, Dr. Zivadinov is encouraging more testing, research and even possible treatment....so there's something strong enough for Buffalo to recommend more. Not the 95% association that Dr. Haacke's cohorts were showing with MRV in Hamilton, and not as high as expected, but the research continues.
cheer
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS
zap
Family Elder
Posted: Wed Feb 10, 2010 10:32 am Post subject:
Also, gotta say - while I, too, am a bit disappointed in the numbers, they are still vastly more promising than ANY of the numbers I've seen come from the CRABs treatments!
costumenastional
Family Elder
Posted: Wed Feb 10, 2010 10:32 am
55% doesnt sound like 95% at all...
also, this article is totally a downer comparing with the news letter Zivadinov published just a few days ago.
i am dissapointed.
sonia52
Family Member
Posted: Wed Feb 10, 2010 10:33 am
What about the 22 % - 25 % of healthy controls diagnosed with CCSVI because they met two criteria??? They'll have MS in a couple of years??? Or we can have CCSVI without having MS? It would be interesting to know why...
LR1234
Family Elder
Posted: Wed Feb 10, 2010 10:36 am
25% of controls had issues too. I am also dissapointed with the findings. i was also hoping for more obvious differences between controls and MS patients. Oh well, lets hope that more research shows more differences between controls and MS patients...maybe other veins are affected that have not yet been tested.
Algis
Family Elder
Posted: Wed Feb 10, 2010 10:36 am Post subject:
Azygous vein wasn't checked either
costumenastional
Family Elder
Posted: Wed Feb 10, 2010 10:37 am
I was really waiting for Buffalo to make CCSVI a sure thing. Now, with a 55 percentage i am afraid of negative critics more than ever...
kc
Family Member
Posted: Wed Feb 10, 2010 10:37 am Post subject:
Cheer leader,
Thank you for clarifying this. My adrenaline is pumping so hard right now (probably thru a stenosed jugular) that I just saw the numbers and did not fully absorb all of the lingo.
Once again cheers to cheerleader.
kc
costumenastional
Family Elder
Posted: Wed Feb 10, 2010 10:47 am
We should also note that a little less than half of patients DIN NOT have stenosis!!!!!!!
This is BAD news whatsoever. It clearly means that these people are not sick because of vascular problems.
One more time, this is not what i expected after i read the news letter the other time. And i know this goes for all of us.
As far as the CIS or definite MS thing, i dont see why it is important at all.
We all know very well what CIS means. That it wont stay like that for ever.