review of the facts-

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

review of the facts-

Postby cheerleader » Thu Aug 13, 2009 2:59 pm

Think it's time to review what we know (fact), and what we don't know (conjecture)-

*CCSVI has been found in 100% of the CDMS patients Dr. Zamboni has tested. He has reported this in a peer reviewed paper. It is only related to MS patients. No other neurological diseases had it. Repeat: CCSVI is only found in MS patients. It is related to MS. SUNY Buffalo was interested in his research, and are doing an independent 1000 person blinded study on CCSVI right now.
*Dr. Simka found CCSVI in 9 patients. He is writing up his research.
*Dr. Dake has seen in it 30 or so patients. He will be writing up his research and is beginning a clinical trial.
*Dr. Zamboni used a balloon procedure to open the stenosied veins of 18 CDMS patients in the midst of relapse, and there was a return of function in all patients, without use of steroid, in 4 hours to 4 days. He presented his findings at the Charing Cross Vascular Symposium.
*We have anecdotal reports of improvement in many of the patients who received stenting. Most of these patients were below a 2 EDSS, and had relief from cognitive and heat intolerance issues. Some of the more advanced patients treated by Dr. Dake have also seen improvements.

My husband Jeff was a 1.5, dx for 2 years. He had two occluded jugular veins which are now opened with stents. He went boating with his Dad yesterday and chopped firewood for 2 hours in 90 deg. temps. We watched a movie, and watched the meteor show until midnight. He's outside now, chopping more wood. I've been reticent to report how well he is doing, but it's fact. He couldn't have done this last summer. Yes, he is early in the disease...and I do not have a crystal ball. Which leads me to-

What we do not know:
How Zamboni's more progressed Liberation 100 patients are faring, with only a balloon intervention.

and the future for all the treated patients....

Folks, it's too soon to make sweeping pronouncements. No one (certainly none of the doctors) has claimed that opening veins and removing reflux will cure everyone's symptoms. We have a hunch it will stop progression of the disease, and remit some symptoms in some people. Some doctors think CCSVI might be causative of MS, and is a congenital disease. Beyond that, it is WAY too soon.

I look forward to reporting back the facts from Bologna next month. Until then, all else is conjecture.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zap » Thu Aug 13, 2009 3:03 pm

thanks cheer!
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Postby mrhodes40 » Thu Aug 13, 2009 4:15 pm

Well you beat me to this point which I was getting ready to address as well, and I agree with everything as written!

I would add a gentle modification that Dr Zamboni did 3 peer reviewed studies and papers on reflux in MS with 100% finding in all of them all with good numbers of patients totaling about 750 (controls and MSers)
If the liberation 100 people are included it gets to be 850 about half were MSers but the blinded people could tell who was who by looking at the scan.

These were twice blinded. The person doing the doppler scan did not know the diagnosis and the second person reading the scan later did not know this either. typically in studies like this the records are referred to by an impersonal number so no one knows who and what they are looking at.

Given that there were small replications, but with again extremely strong concordance, showing stenosis is associated, it is OK to say it is associated, because that is pretty sure at this point.

Dr Dake does not have 100% but no one really expected that in an open call with no inclusion criteria.

and
We have a hunch it will stop progression of the disease, and remit some symptoms in some people.


A reasonable hunch, a degree of clinical suspicion, based on physiology and physical findings if a patient has stenosis...but not assurance.

Some doctors think CCSVI might be causative of MS, and is a congenital disease

These kinds of questions will spark a LOT of new research. I for one am really jazzed about the new direction that research is taking here. It can ONLY be good.

At the minimum it may explain why we have such poor success with autoimmune approaches----------assuming that there was some kind of dual issue with autoimmunity and CCSVI as co conspiritors in the MS disease.

my personal bias on that last point (that it is both) is 'probably not' but the research will tell the tale eventually.


marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Thu Aug 13, 2009 4:43 pm

Thanks for the further points and numbers, Marie. I get nervous when I see postings with proclamations about "only anecdotal results." These are peer reviewed papers, with hundreds of MS patients and controls involved. Anecdotal means something is heresay, or not based in fact...and that's just not true about CCSVI in MS. I can't believe that Harvard, Stanford, Georgetown, Stonybrook and Jacobs would be attending an international conference to report heresay.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: review of the facts-

Postby patientx » Thu Aug 13, 2009 5:55 pm

cheerleader wrote:Think it's time to review what we know (fact), and what we don't know (conjecture)-

*CCSVI has been found in 100% of the CDMS patients Dr. Zamboni has tested. He has reported this in a peer reviewed paper. It is only related to MS patients. No other neurological diseases had it. Repeat: CCSVI is only found in MS patients. It is related to MS. SUNY Buffalo was interested in his research, and are doing an independent 1000 person blinded study on CCSVI right now.
*Dr. Simka found CCSVI in 9 patients. He is writing up his research.
*Dr. Dake has seen in it 30 or so patients. He will be writing up his research and is beginning a clinical trial.
*Dr. Zamboni used a balloon procedure to open the stenosied veins of 18 CDMS patients in the midst of relapse, and there was a return of function in all patients, without use of steroid, in 4 hours to 4 days. He presented his findings at the Charing Cross Vascular Symposium.


You left out a few facts. In his paper on the angio procedure, Dr. Zamboni provided no criteria for defining a relapse. So, no one knows if these patients were, in fact in the midst of an actual relapse. He provided no raw data, so there was no way of verifying the statistical analysis. And he did no MRIs, before or after the procedure.

And, this is just my impression, but it seems that JNI is anything but interested in this research.
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Postby CureOrBust » Thu Aug 13, 2009 7:56 pm

mrhodes40 wrote:Dr Dake does not have 100% but no one really expected that in an open call with no inclusion criteria.
One thing I note about this one, Dr Dake's "criteria" are very different to Dr Zamboni's.

If I understand it correctly, Dr Dake's "criteria" is "if a vein would considerably benefit from stenting", while Dr Zamboni's criteria is the two failures on his doppler tests.
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Postby Jamie » Thu Aug 13, 2009 8:04 pm

That was not the full paper though was it?

Isn't the full study yet to be published?

I really don't give a shit. Our lives are 100% better and that's good enough for me.
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Postby scorpion » Thu Aug 13, 2009 8:39 pm

I guess you find the facts that support your position. I know one fact is that Dr. Dake is getting some money from his "occlusions". Sorry for being such a skeptic....
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Postby Rokkit » Fri Aug 14, 2009 7:04 am

I'm sure Dr Dake was struggling to pay his bills before this opportunity to take advantage of a bunch of overzealous MS patients came along. I'm also sure he was happily willing to ignore the massive liability that would come from administering treatment he knew wasn't needed.

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Postby robbie » Fri Aug 14, 2009 7:21 am

i hope were all here in 5 years, there will be some crow to eat by one side or the other..
Had ms for over 19 years now.
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Postby patientx » Fri Aug 14, 2009 9:10 am

Jamie wrote:That was not the full paper though was it?

Isn't the full study yet to be published?

I really don't give a shit. Our lives are 100% better and that's good enough for me.


Well, that's fine for you. But for those trying to get other docs interested, it's a bit tough when the published papers are so flimsy.
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Postby cheerleader » Fri Aug 14, 2009 10:16 am

patientx wrote:
Well, that's fine for you. But for those trying to get other docs interested, it's a bit tough when the published papers are so flimsy.


More facts, less conjecture-

One paper was all it took for a wife from California to get a premiere endovascular surgeon interested. One paper. He did not think it was flimsy. He thought it was astounding.
http://jnnp.bmj.com/cgi/content/short/80/4/392

Here are some other doctors who were also interested (some from JNI!):
I'll let you folks google their names for yourselves.
Dr. Patricia Coyle
Dr. Gary Cutter
Dr. Alessandra Ferlini
Dr. Claude Franceschi
Dr. Eliot Frohman
Dr. Giulio Gabbiani
Dr. Roberto Galeotti
Dr. E. Mark Haacke
Dr. Byung-Boong Lee
Dr. Francesco Mascoli
Dr. Fabrizio Salvi
Dr. Marian Simka
Dr. Mauro Ursino
Dr. Bianca Weinstock-Guttman
Dr. Robert Zivadinov
-and the list grows everyday.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby patientx » Fri Aug 14, 2009 11:00 am

removed
Last edited by patientx on Fri Aug 14, 2009 1:02 pm, edited 1 time in total.
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Postby Loobie » Fri Aug 14, 2009 11:13 am

Dude,
You're just being sarcastic now. That's the point when debate seeces and emotions flare and people start arguing without their heads. You've provided some fungent arguments throughout this, why the change of tone to smart ass?
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Postby cheerleader » Fri Aug 14, 2009 11:45 am

Fact:
Patientx goes on other websites and posts about CCSVI

by patientx, Jul 29, 2009 05:38PM
That's a valid argument about CCSVI being caused by the MS, instead of the other way around, and has been raised by neurologists. However, the damage done by MS is either in the brain or spinal cord. The stenosis seen in MS patients is usually downstream from this damage, in the jugular veins or the azygous. And the stenosis or strictures are almost mechanical in nature. So, to me (and others), it's hard to imagine how the disease process in the CNS could be causing the CCSVI.

Also, it's acknowledged (even by neuros), that a compromise of the blood-brain barrier is part of the pathogenesis of MS. To my knowledge, this hasn't really been explained. CCSVI could offer one explanation.

Not that I'm a salesman for the CCSVI theory; just thought I'd offer some explanations...

link to medhelp.org

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Katje:

I don't know if Marc has it on his blog, but you can find plenty of info about CCSVI (as well as about Revimmune) at http://www.thisisms.com.
Pam:
That's amazing you were asked to participate in this study at Buffalo General. I tried volunteering and got no response from them.

link to MSWorld.org

Thanks for spreading the word, Patientx!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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