Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby CureOrBust » Mon Feb 09, 2009 5:58 pm

cheerleader wrote:The "healthy" controls contained folks w/other neurological disease...they were lumped together under the heading healthy, instead of split out like the first study. Maybe that explains the 24 "healthy" control patients found w/venous issues. I think it's more about semantics than math.
Actually the 187 "healthy" controls in the first study, is made up of = 60 age matched + 82 older + 45 OND's. So the 187 I quote includes the OND's. So, they both don't exclude OND's. And the OND's had 0 in the first trial anyway.

There is only one way, I'm going to have to purchase the article.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Advertisement

Postby mrhodes40 » Mon Feb 09, 2009 7:59 pm

Cur-o
I knew it! I couldn't be enlightening you with anything I said, your too cagey Cur-0. I turned the page to 17 to see what the last post was and I was going to post that we need to read the whole citation to find out.

Sometimes the selection criteria are different from study to study, there must be some thing here along those lines. Good detective work, and you are right about the peculiarity. I look forward to your reading of the whole paper and how you see the difference accounted! :wink:

On another plane, it is not so odd to imagine that some people who are in the 'healthy' group, if it is large enough, will fail, after all there should be some people who are pre diagnoisis of all kinds of things, vascular issues in particular are kind of "silent". Hypertension is not called the silent killer for nothing............
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby CureOrBust » Mon Feb 09, 2009 9:11 pm

mrhodes40 wrote:On another plane, it is not so odd to imagine that some people who are in the 'healthy' group, if it is large enough, will fail
Yeah, that's what I was thinking. The numbers on the 08 study appear "too clean". I would expect that you would get some abnormality or human error messing the results up, but they recorded none in the first trial. The second trials results appear more organic.

On my first read of the new publication, that was the first thing I wanted to understand. If you remember their table of the five tests that were performed (I think table III in the 08 study), the equivalent in the new study has 21 of the failures (for non-MS) happening on test number five (and single failures out of 177 on two other tests). So worst case, its test number 5 that is not as selective as the others (if this theory is on the right path at all). But they still have p<0.0001

And also, the ultrasound technicians and the physicians interpreting the results, were blinded.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby cheerleader » Mon Feb 09, 2009 10:02 pm

More from the second Zamboni study,( the Sept. version is available in toto- it was modified with specific numbers and resubmitted- available for purchase) Cure's right, the first study numbers were surprisingly "clean" if the following is true...

It has been reported that 33% of healthy individuals showed unilateral or bilateral IJVs valve incompetence. However, reflux
recorded in accordance to this condition of measurement is
strongly associated with transient global amnesia, in 68%
of cases, with significantly higher prevalence as compared
to controls (Sander and Sander, 2005; Schreiber et al.,
2005).


Doppler Haemodynamics of Cerebral Venous Return
http://www.bentham.org/cnr/openaccessar ... /006AG.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby mrhodes40 » Tue Feb 10, 2009 11:34 am

I bought a copy of the newest Zamboni paper "The Value of doppler haemodynamics in the assessment of MS" and the entire thing appears that it would be invaluable for the technicians wanting to assess the MS patient using Zamboni's parameters. It explains in depth how they do the tests.

Make purchase here



I copied that paper and also the 2008 paper "Doppler Haemodynamics..." found
here

my hope is that this combination of papers offered to the sonographer and the doctors will make it easy for them to see "if" they are doing what Zamboni did and also to see if if I have what Zamboni saw.

This may be important because according to the '08 Zamboni "Doppler Heamo..." paper
TCCS-ECD is noninvasive, repeatable, costeffective
and permits to investigate the cerebral venous outflow in its dependence upon changes in posture and the
alternating pressure gradients of the thoracic pump. Several authors reported normal parameters concerning related
aspects of cerebral venous return. However, there is no ECD-TCCS standardization of what can be considered a normal
venous return.
The authors have summarized the current knowledge of the Doppler haemodynamics of the cerebrovenous
system and propose a list of reproducible clinical parameters for its sonographic evaluation. In future, the development of
this diagnostic technique could be of singular interest in iron-related inflammatory and neurodegenerative disorders like
multiple sclerosis.


Based on that abstract summary of the paper, you can see that the goal is to outline how they are looking at these people when they do the studies on them, and get their way of assessing the findings to be reproducible by others and accepted as standard by the medical community.

But it could also mean that if others do the studies right now without reading this material and without understanding how the authors decided what was 'failure' of an exam and what was not, they may find the results are not consistent with Zamboni's at all, in other words say it is "normal" when in fact you were exactly as Zamboni says MSers are with regards to the doppler studies.

I am getting my tests March 13. I am excited to see what is there as the guys doing my test are very interested in what we are doing. Apparently, according to the receptionist, there is a real buzz in the office about it and discussion at the lunch table.

OTOH what can or would be done about the findings is competely up in the air right now...............we'll be talking about that later....... :?
Last edited by mrhodes40 on Tue Feb 10, 2009 1:56 pm, edited 1 time in total.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Tue Feb 10, 2009 12:33 pm

mrhodes40 wrote:
ok someone educate me why does that URL thing not work the way I thought it might?


Try this, Marie....
[url=http://www .... the rest is fine

Glad you got the paper and are creating lunchroom buzz :)
AC
Last edited by cheerleader on Tue Feb 10, 2009 2:29 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby mrhodes40 » Tue Feb 10, 2009 1:58 pm

Thanks Cheer! It works now.........links all good. I had a space in it, that messes it up totally. :roll:
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby CureOrBust » Wed Feb 11, 2009 12:03 am

I dropped last years article off at another neuro today, who said he would read it (he read the abstract while I was there). He hadn't heard of Zamboni, but saw the publications they were in, and commented that they were respected journals.

This guy is heading the Campath trials here in Australia. If this turns out to be a dud, I'm going to be a little embarrassed :oops:
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby CureOrBust » Mon Feb 16, 2009 2:09 am

OK, today I had the tests done on me.

I did not duplicate Zamboni's result of "detection ≥2 parameters in the same subject". I did however have one.

My neurologist reviewed the results of the doppler scans (performed by a sonographer), and informed me I had a reflux in my Jugular valve(s). I would guess that means I had a detection of item 1 (of the 5 tests).

Before I was examined, I asked the neurologist "do you expect a failure on any of these exams", and he said no. Also, I have gone over the numbers in the two studies, and the only participants in the trial that failed on the first exam, were CDMS. It was also the highest failure rate amongst the MS candidates; 46 of 65 in Study 1 and 76 of 109 in the second, while 0 of the controls failed this exam in either study. However, I only failed on the one exam.

My neurologist is putting the results together, and is interested to hear what / if Zamboni responds to me regarding my results.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby Cojack » Mon Feb 16, 2009 7:35 am

what's CD MS? :)
User avatar
Cojack
Family Member
 
Posts: 63
Joined: Tue Nov 11, 2008 3:00 pm

Postby jimmylegs » Mon Feb 16, 2009 8:13 am

'circulation deficient'... characteristically depressing...
or wait maybe clinically diagnosed ;)
jimmylegs
Volunteer Moderator
 
Posts: 9104
Joined: Sat Mar 11, 2006 3:00 pm

Postby mrhodes40 » Mon Feb 16, 2009 9:47 am

CDMS=clinically definite MS as it was defined in the paper. People who qualified as having MS by the Macdonald Criteria

Studies often have acronyms for their cohorts specifically for their papers so they can avoid repeating themselves ad infinitum. If you've read the Zamboni papers then he refers repeatedly to these CDMS patients.......
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Mon Feb 16, 2009 10:31 am

Cure...
Thanks for being the first guinea pig. Congrats, I think? Now you will not seem foolish to your neuro- and you may be on the way to some healing.

Does this mean you may have the internal vein scan? Since you "failed" the first round...will you have more testing or is this based on Zamboni's response? Did you get any cool color printouts of your venous return?
Really appreciate your go out and get'em attitude-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby mrhodes40 » Mon Feb 16, 2009 10:39 am

Cur-o wht a fab thing to find when I got up today!
Congratulations!

Before I was examined, I asked the neurologist "do you expect a failure on any of these exams", and he said no---also---I did not duplicate Zamboni's result of "detection ≥2 parameters in the same subject". I did however have one

I am really interested in your result. It does seem the test you failed is the one failed most often by CDMS in the trial. It will be interesting to see what Zamboni says and if he gives your doc some feedback on some technical angle that shows he sees a "failure" where these guys called it good or something. But wow! Even though it was only one, it seems to me that it supports Zamboni's work, especially since your neuro said he expected no problem there.

But here's what I have been thinking--(I'm going in for tests Mar 13, so think about it a lot, esp at 3 am for some reason :lol: ):

The dopplers studies are to assess venous reflux. Venous reflux is not a normal condition, no matter whether one or more is there. But it is kind of like getting an MRI, you know? On one hand its almost like "the MRI is abnormal, so what does THAT mean?" It takes further interpretation by your neuro and decision about what it means clinically in terms of your physiology and available treatments in order to really have any value. What does it mean we need to do that there was reflux on doppler?

According to Zamboni it means there is a stricture that should be released, and the hope, totally unproven at this point, is that the release of that stricture and then the alleviation of the reflux will result in better outcomes for MS, so the question is;

IS anyone talking along those lines to you at all? :? Are you scheduled for venography to see the vein itself and look at the structure to try to pinpoint the exact blockage? OTOH, They said reflux at the jugular valve so does that mean they are saying it *is* a jugular valve issue and they could fix it there? Like no venography is needed?

Inquiring minds want to know :lol:
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby CureOrBust » Mon Feb 16, 2009 8:58 pm

cheerleader wrote:Now you will not seem foolish to your neuro
At least not completely wacko 8O

I spoke to one of my neuro's today (who is heading the campath trial in aus) and told him of my result on the doppler. He wasn't overly excited by it. Last time I saw him, I left him a copy of Zamboni's first paper. He told me he has shown it to a number of neurologist colleagues, and one of the responses was "how did this get published?" :lol: This neurologist said that he honestly does not see how these issues could physiologically explain the damage seen in MS; but he obviously has not totally ignored it since he has shown it around.

cheerleader wrote:and you may be on the way to some healing.
At this stage, I am not doing anything specifically in regards to my reflux. yet. So no specific/direct healing from these results.

cheerleader wrote:Does this mean you may have the internal vein scan? Since you "failed" the first round...will you have more testing or is this based on Zamboni's response?
Being the whimp that I am, NO I will not be scheduling myself for any invasive tests. My vascular neurologist (specialises in stroke) did not appear too concerned with the identified reflux. He commented that the reflux was not causing any measurable flow issues in the deep cerebral veins.

cheerleader wrote: Did you get any cool color printouts of your venous return?
I will be sent my results in the coming days. I don't think I will get the colour pictures, however, I did see them on the screen of the doppler machine.

mrhodes40 wrote:According to Zamboni it means there is a stricture that should be released
My guy explicitly said he saw no restrictions, and that my jugular valve was of normal shape and size. I think it is simply a failure of the valve, in not allowing blood to flow in the wrong direction. This is also how I read Zamboni's papers.

mrhodes40 wrote:IS anyone talking along those lines to you at all?
No. He didn't seem too concerned when It comes down to it. I'll see what he writes on my report.

mrhodes40 wrote:Are you scheduled for venography to see the vein itself and look at the structure to try to pinpoint the exact blockage?
ahhh... I'm not banging on their doors to be pumped up with radioactive dye. :wink:

mrhodes40 wrote:They said reflux at the jugular valve so does that mean they are saying it *is* a jugular valve issue and they could fix it there? Like no venography is needed?
It is purely a jugular valve issue, and no one has specifically raised the idea of any interventional treatment. When my guy sends me my report, I will be asking some more questions.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service