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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

i was wandering what causes the stenosis in the first place

Postby lulu » Thu Jul 23, 2009 5:31 pm

i was wandering what causes the stenosis in the first place. does anyone know?
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Postby patientx » Thu Jul 23, 2009 5:33 pm

cheerleader wrote:
LR1234 wrote:So were the 25% relapses associated only with restenosis?

Yup..all restenosis patients had relapses. Hopefully, the stents will keep the veins open and prevent relapse.
cheer


Small point (or maybe not), but I think he is saying the all patients that relapsed had restenosis, not that all who experienced restenosis had relapses.

"All patients with restenosis corresponded to those who manifested relapses in the year subsequent to the endovascular treatment. Symptomatic and asymptomatic restenosies were again treated with balloon dilatation."


The second sentence seems to imply that some who had re-stenosis were asymptomatic (i.e. not experiencing symptoms of a relapse). But the important point is that relapse was strongly associated with re-stenosis.

I'm also having trouble following his numbers. He reports that a total of 75 patients were treated, but later in the article he writes that the azygous procedure was performed in 38 out of 77 cases. A little further, he writes,

"internal jugular vein stenosies were present in 94 of 144 patients."


Where did the extra patients come from?
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Postby Lyon » Thu Jul 23, 2009 5:42 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:09 pm, edited 2 times in total.
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Re: i was wandering what causes the stenosis in the first pl

Postby cheerleader » Thu Jul 23, 2009 6:31 pm

lulu wrote:i was wandering what causes the stenosis in the first place. does anyone know?


Dr. Dake and Dr. Zamboni posit that it's a congenital malformation which worsens with age, relapses and inflammation. Still not certain.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Thu Jul 23, 2009 7:26 pm

If most of the people had RR wouldn't they have improved anyway? I guess what does not make sense to me is why you would do the procedure on a number of people having an acute exacerbation and then state they were feeling better 1 to 6 months after the procedure. That is what RR means!! Also I wonder why they did not mention any differences in the utcome between the people with a progressive form of the disease and RR form.? There was also NO OBJECTIVE measure of EDSS score. Why didn't they give the participants a neuro exam to determine if they actually had improvements in their EDSS score as they do with most new therapies that claim to improve functioning(Campath, Revimmune,etc.) Finally what do they mean there were no MRIs' performed. You are telling me they could not give ONE of the participants who claimed to improve an MRI?? ??????? None of the participants neuros ordered a MRI after a severe exacerbation??? Was there anyone who experienced a relapse after the procedure but had no blockage?? Ok guys, feedback please. Please do not hesitate to point out any data I may have misread!!! Thanks.
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Postby daniel » Thu Jul 23, 2009 7:39 pm

scorpion wrote:...snip...
I guess what does not make sense to me is why you would do the procedure on a number of people having an acute exacerbation and then state they were feeling better 1 to 6 months after the procedure. That is what RR means!!
...snip...


The data actually stated that symptoms dissipated anywhere from 4 hours to 4 days. That is a huge difference from the 8+weeks it takes steroids to allow my attacks to subside.

Edit: this is in regards to acute relapses/attacks.
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Postby cheerleader » Thu Jul 23, 2009 7:53 pm

They did do neurological exams and RRMS patients showed improvement. They used the MSFC scale, rather than EDSS...this scale is recognized internationally, and was developed by the National MS Society Task force as a more reliable measure of disability.


TO ADDRESS THE poor reli- ability and insensitivity to
change over t i me of t he available multiple sclero- s i s ( MS ) c l i n i c a l r a t i n g scales, including the Kurtzke Expanded
Disability Status Scale (EDSS),1 the Na- tional MS Society’s Clinical Assessment Task Force (NMSS Task Force) devel- o p e d t h e MS F u n c t i o n a l Co mp o s i t e (MSFC).2-5 The MSFC includes quantita-
t i v e t e s t s of l e g f unc t i on/ a mbul a t i on (Timed 25-Foot Walk [T25FW]), arm function (9-Hole Peg Test [9HPT]), and cognitive function (Paced Auditory Se- rial Addition Test [PASAT])the initial version of the MSFC.

http://archneur.ama-assn.org/cgi/reprint/58/6/961.pdf
Last edited by cheerleader on Thu Jul 23, 2009 7:58 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Thu Jul 23, 2009 7:56 pm

Ok, thanks for clarifying!!
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Postby chrishasms » Thu Jul 23, 2009 9:12 pm

123
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Postby marcstck » Thu Jul 23, 2009 9:22 pm

The results reported in this paper are indeed impressive, but the lack of objective testing means that this paper will be completely disregarded in the greater neurologic community.

In dealing with my own neurologist (a lead researcher here in NYC) and the research specialists at the NIH, I've come to see that observational studies hold very little water with these folks. As others have pointed out, it would have been easy enough to do some standard neurologic testing, such as a timed 25 foot walk, the "peg in hole" exercise, or even some evoked response measurements that could quantify the gains seen. The paper talks about testing regarding upper and lower limb mobility, but doesn't specify which tests were used, or state specifically where gains were seen. MRI evidence would be mandatory before any research organization in this country would take this paper seriously.

In some ways, putting out information in the form that this paper takes, with its huge holes in objective functionality testing data, and complete lack of imaging support, could do more harm than good to the greater cause of advancing CCSVI as a legitimate theory worthy of the attention of the neurologic mainstream. It does not cast Dr. Zamboni in the best light from a research standards point of view.

I don't doubt the results Dr. Zamboni is reporting, I only wish he'd followed a more standard scientific protocol in his reporting. The connection between relapses and stenosis appears to be compelling, but still, it is only observational, and will be regarded as little more than anecdotal evidence. The mutable nature of RRMS makes counting relapses a very poor standard for measuring outcomes.

Hopefully, Dr. Zamboni will release further information that will reveal some of the objective standards that were used in his scoring of patient's disability status. If CCSVI is "the" answer, positive results from progressive patients would be quite compelling as proof of theory...
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Postby cheerleader » Thu Jul 23, 2009 10:14 pm

Dr. Zamboni used the MSFC scale, which was created by the National MS Society Task Force and uses z-measurements...I included a paper which explains the system above, if you are not familiar with it. It is a thorough methodology and also includes cognitive function and fatigue, something sorely lacking in the EDSS scale (and the reason Jeff's EDSS was so low, but his mental disability was so high.) These tests are administered by technicians and neurologists, and this paper was written in conjunction with neurologists from the University of Bologna (Salvi, Menegatti) It is much more than anecdotal evidence, it is documented research. See chart #4 for improvements in RRMS patients. They are quite impressive.

Counting relapses is what all of the CRABS use. They hang their hats on reduction of relapses by 30%... this is reduction of relapses by 4 times. More than that, relapses were halted by opening up stenosied veins, which were found in EVERY SINGLE MS patient. In all of my research, I've never found another protocol, other than steroids, which has stopped a relapse so quickly. Of course this is observational...18 individuals had an exacerbation, they are admitted to the hospital, where Dr. Zamboni opens up closed veins. And then the exacerbation remits within a period of 4 hours to 4 days.

I do wish there were MRI reports, Marc...no idea why not, expect as Bob mentioned...maybe cost? I'm hoping for more info to come.
On Sept. 8th, many more papers will be presented in Bologna. I'm especially looking forward to Dr. Dake's.
cheer
Last edited by cheerleader on Thu Jul 23, 2009 10:25 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Thu Jul 23, 2009 10:22 pm

chrishasms wrote:Joan I don't know why you can't take some kudos and just say, "It feels really good."

Ha! I'll say this, Chris...It feels really good to see my husband hanging with our son, playing outside in the summer heat, feeling social, conversing with friends, staying up late to watch a movie and not falling asleep...that part feels really good. But that's not enough for me...or else I wouldn't still be on here. It ain't over. Lots more work to do.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby marcstck » Thu Jul 23, 2009 11:31 pm

Cheer, don't get me wrong, I would be thrilled if Zamboni was right. I am, though, disappointed in the quality of the material put forth in this latest paper.

The paper claims improvements in MSFC scale scores, but does not back this up with any hard statistical evidence. What were the improvements in the 25 foot timed walk? What were the precise numbers that they used to define each patients initial score, and there subsequent improvement?

The lack of MRI evidence is appalling. I realize that MRI technology is expensive, but these people are not doing research in the jungles of Cambodia. Certainly they must have had the ability to image at least some of their test subjects. As you say, hopefully more info will be forthcoming.

It's true that the CRAB drugs do use relapse rates as outcome measures, but this is precisely why they are so distrusted by so many patients. The reported improvement in relapse rates for the CRAB drugs are on par with what would be expected from the placebo effect, and the drugs would not be in such widespread use it where it not for their ability to reduce enhancing lesions (although that's another controversial outcome marker).

As reported, the cause-and-effect relationship seen by Zamboni in this paper does seem extremely significant. Still, we have not seen these kinds of results duplicated by any other group, nor have these papers been subject to peer review as of yet. It remains to be seen if they stand up to strict scientific scrutiny.

We saw much the same thing when the Vanderbilt University group first started reporting that they'd identified chlamydia pneumonia as one of the primary causal agents of multiple sclerosis. According to their papers, they found hard evidence of active CNS chlamydia pneumonia infections in the vast majority of MS patients they studied. This research generated a tremendous amount of excitement and histrionics. Unfortunately, over time, no other group was able to replicate these findings, and thus the chlamydia pneumonia theory remains on the fringe of MS thought, and has been largely dismissed as a failed theory. Of course, it still has some very vocal proponents, and the theory may yet have some validity, but it simply did not stand up to the rigors of scientific scrutiny. Again, I would be thrilled if it did. I'd love to be able to cure my MS through the use of antibiotics (which, incidentally, I tried, to no avail)...

I'm hoping that the CCSVI theory does not suffer the same fate. I would absolutely love for it to be correct, just as I'll be enthralled if my CT venography scans do turn up some significant blockage in my own jugular or azygous veins.

We are all hoping and praying for a cure...
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Postby Ernst » Fri Jul 24, 2009 2:55 am

I understand what Marck means, but I take this as preminilary results. I'm sure there will be more data, with more precise accuracy and measured results. To me, this was VERY GOOD thing to read, especially the vein stenosis and relapse connection. Lets see what next autumn and winter will come. I still think that this is the beginning of long journey.. and now the road is right one.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Blunketts_dog » Fri Jul 24, 2009 4:21 am

Although exciting, as a scientific peer review paper it is fairly poor. I wonder if this is just a short document to back up his Charing Cross presentation for the people who were there - i.e. not really intended for the wider scientific community. Are there plans to release further papers to coincide with the September conference? They certainly seem to be gearing up for a sudden bout of interest.

The lack of MRI is also strange. Wasn't Wobbly having MRI follow ups? - I suspect the paper about the liberation group will be a lot more rigorous.

The connection between relapse and 're-stenosis' is amazing - it would be interesting to test island girl for stenosis if she has another relapse. Does Dr D have any plans to follow her up in the future?
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