Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby cheerleader » Tue Dec 16, 2008 7:42 am

« Moderator's Note: This is the original thread that began the discussion of CCSVI here at ThisIsMS. Its status was changed to "sticky" to make it easy to find for people to get a historical perspective on the development of the discussion here. There are also several good references cited which may or may not be available in the other threads. NHE »
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Dignan recently posted the link to Dr. Paolo Zamboni's abstract on Chronic Cerebrospinal Venous Insufficiency (CCSVI). I asked him to post in the general, but he suggested I go ahead and break it down, since the vascular connection to MS has become my holy grail... Dr. Zamboni is a vascular doctor at the University of Ferrara in Italy. In his studies, he came upon a unique situation to MS patients, a reflux of their brain/spinal blood. His team initiated a new study, based on his previous observations, just published December online Dec. 5th by JNNP.

http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

« http://www.ncbi.nlm.nih.gov/pmc/article ... 4-0392.pdf »

The breakdown: 65 clinically defined MS patients and 235 controls (including healthy patients and those with other neurological disorders), blindly underwent a combined transcranial and extracranial Color-Doppler high-resolution examination (TCCS-ECD) aimed at detecting at least two of five parameters of anomalous venous outflow, blood flowing up and down the same vessel. (venous insufficiency seen by the eye are varicose veins on the legs.)

Subsequently, venography demonstrated in CDMS, and not in controls, the presence of multiple severe extracranial stenosis, affecting the principal cerebrospinal venous segments; it configures a picture of chronic cerebrospinal venous insufficiency (CCSVI)


Zamboni's team found that in 100% of the patients with MS, and in 0% of the controls, something was blocking the blood vessels near the brain and/or spine (the jugular vein and the azygous vein), creating a reflux situation. They could see this in color on the doppler. Reflux is when blood cannot pass by an obstruction. This distends blood vessels, and allows for leakage. This reflux happened in MS patients, not the controls, no matter what position they were on the tilt board.

We also found a highly significant difference in the distribution of the clinical courses among the CCSVI patterns (p<0.0001, chi-squared test) (Table III). Particularly, the location of venous obstruction seems to be a key element influencing the clinical course of the disease.

Zamboni's team found that the majority people with RRMS had blockage in the extra and intracranial area, and that those with PPMS had blockage in veins along the spinal column.

In this study we described the association between MS and the altered modality of venous return determined by extracranial multiple venous strictures. In our controls, venography quite resembled the normal imaging of extracranial cerebrospinal veins. 25 The hampered cerebrospinal venous drainage in patients with MS determines a complex haemodynamic picture defined as CCSVI.


CCSVI, Chronic Cerebrospinal Venous Insufficiency, appeared only in patients with MS. None of the other neurologically diseased patients had this pattern.

Regarding the causative role of CCSVI in MS, our review of the literature revealed descriptions of associations between the extracranial venous obstructive malformations herein described and disabling clinical pictures defined as myelopathies, without a precise neurological diagnosis to date.27-28


In our study the reflux occurred in any body position without the need to elicit it by a forced movement, suggesting that it is not an expression of valvular incompetence but rather of a stenosing lesion that cannot be crossed with postural or respiratory mechanisms, thereby becoming a long-lasting reverse flow.


Zamboni does not define these blockages, or posit what these "venous obstructions" are, but they are in the blood vessels, and they are hampering the correct flow of blood in people with MS.

The following observation was a revelation....

However, if vessel abnormalities were due to an inflammatory-autoimmune disease, they would be less frequent in patients treated with
immunomodulating/immunosuppressant agents. On the contrary, our analysis in the RR-SP group did not demonstrate an increased number of extracranial venous stenosing lesions in untreated as compared to treated patients.


Immune modulating therapy did nothing to change vessel lesions or reflux bloodflow. huh.

I'm not going to editorialize. I'd like to ask other people to read the abstract, look at the pics, and read his other studies.

http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Zamboni and his team have stumbled upon something, and it appears a new light is shining on MS research.
This has brought me renewed hope, and I thank Dignan for digging it up and sharing it with us.
Discuss,
AC
Last edited by cheerleader on Tue Apr 28, 2009 2:22 pm, edited 6 times in total.
Husband dx RRMS 3/07
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http://ccsviinms.blogspot.com
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Postby gibbledygook » Tue Dec 16, 2008 9:27 am

I think that this is absolutely the right path especially given my good response to salvia which reduces blood stickiness and helps blood flow by dilating the vessels and reducing the highly elevated levels of that potent vasoconstrictor, endothelin 1 (massively overexpressed in MS patients). I think that the vast majority of the problem is in the vasculature which is overconstricted and thus prevents normal blood flow. :lol:
Well done Dignan for finding this.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Tue Dec 16, 2008 11:20 am

In view of the given facts we must ask ourselves whether the MS patient's shameless exploitation for an as senseless as profitable drug experimentation, grounded in an illogical MS "definition" and "identification", does not form an ethical issue. Dr. F.A. Schelling


Sharon sent me a recent paper by Dr. F.A. Schelling...the Austrian doctor who is the grandfather of the venous reflux theory of MS. I had mentioned him in another thread, regarding my vascular studies. Obviously, Schelling is thrilled to have the doppler results confirm his observations.

Dr. Schelling has a fascinating web site, where you can down load his paper on the history of the study of MS lesions
http://www.ms-info.net/ms_040504.pdf

Dr. Schelling's history...

The story began in 1973, at the University of Innsbruck, when F. Alfons Schelling, M.D. began investigations into the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger". And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.


I refer everyone to:
http://www.ms-info.net/evo/msmanu/984.htm

thanks, Sharon!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Tue Dec 16, 2008 6:08 pm

I e-mailed Dr. Schelling, thanking him for his unflagging commitment to MS patients. I have already received a very kind response:

I actually visited Prof Zamboni in December 2007 upon his ultrasonic demonstration of veno-venous reflux into severely affected MS brains.
Upon recently reading the paper which you kindly linked onto I really hope we will soon learn to cure “Dawson finger MS” and to soberly come to terms with The remaining MS forms.
It were wonderful if we could celebrate this together, here in the westernmost part of Austria or also in old quaint Ferrara.


Please, will others read the Zamboni research and comment? I really don't want this thread to slip away...
AC
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Alicia » Tue Dec 16, 2008 9:41 pm

Hello,

I am not sure if this info helps anyone or not but recently I started taking a daily dose of asprin and have noticed a significant difference on how I feel compared to before I took it. My fatigue and lightheadedness have all but dissapeared. I have read that asprin has helped some people with MS reduce their fatigue but I haven't heard about it helping other symptoms. Has anyone else ever taken asprin and had it help with MS symptoms?

Alicia
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Postby CureOrBust » Wed Dec 17, 2008 4:34 am

My neuro accepted a copy of it yesterday after glancing over the abstract, and said he would look at it. This is the first time he has taken an article from me.

My GP took it home with great interest; he was impressed with their confidence intervals on their findings.

I asked for the ultrasound (ie non invasive test) and he was MORE than willing. He said he has very good relations with the radiologist (or whatever) and will discuss this paper with him/her and get back to me within the week.
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Postby Wonderfulworld » Wed Dec 17, 2008 7:21 am

Cure that's great your neuro is open to reading the study.

I think it's a major breakthrough in research but hoping that it won't be sidelined because of current research projects that have a lot of share money riding on them.

Just one thing struck me. If MS dies down so well in trimester 3 of pregnancy, I wonder how this venous insufficiency works....I mean, pregnancy is when varicose veins proliferate in a lot of women, yet that's also when MS is least active in women too. Just a question....
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Postby cheerleader » Wed Dec 17, 2008 8:29 am

Everyone- be like Cure-
1. Print out the abstract and bring it to your neuro/GP
2. Ask for the non-invasive ultrasound of your jugular and azygous veins. Pay for it, if you have to.
3. Find out if you have blockage in your spinal/brain blood vessels creating a reverse blood flow.

100% of the MS patients Zamboni tested had venous insufficiency (something blocking the blood vessels) in their brain or spine. The controls did not.

I think this is beyond my ken...and needs more than aspirin or enzymes.
AC
Last edited by cheerleader on Wed Dec 24, 2008 11:39 am, edited 1 time in total.
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http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Dec 17, 2008 10:07 am

ww, zinc drops during the course of pregnancy and i think it's because the endocrine system is hogging it all.
if the zinc is taken for childbearing purposes other systems are likely deprived.
we do know vit d3 activity changes dramatically to produce 1,25(OH)2vitd3 at the end of pregnancy and that this is protective against relapse... but meanwhile the zinc is dropping... postpartum the anti-inflammatory 1,25 level drops, and chances of relapse increase.. just thinking out loud..
what are the effects of zinc deficiency? zinc works on DNA, immune function, insulin 'stuff', ovaries and testes, liver function
AND zinc is statistically lower in ms patients. moreso in female ms patients.
did you know that when you supplement with zinc, the liver can clean the blood so that it has less ammonia and MORE UREA? i am going to have to look into exactly what that would mean in terms of uric acid.
it's quite interesting that MS patients have both low zinc and low levels of the powerful antioxidant uric acid. what if one can help fix the other?
that just made me think too, some ppl get a relapse when they get a cold, right? and zinc is good for immune function/colds. and ppl also have on average the lowest uric acid when they are having a relapse. does zinc level, the immune system being affected, getting a cold, inability of the liver to process ammonia, low uric acid, and relapse all fit together?
i am starting to look at how zinc affects liver metabolism of toxins to keep the blood clean and not caustic on blood vessels but it's early stages nothing concrete or bolstered with abstracts yet. i'm just throwing it out there i have not spent the usual time to read up on this stuff or back up what i'm saying (other than where i've backed up the various aspects of this post in earlier posts over the last couple years!)
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Postby Wonderfulworld » Wed Dec 17, 2008 1:49 pm

Interesting jimmylegs.
Felt that zinc boosted the immune system too much and I've avoided it for years, apart from in diet or multi-vit.
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Postby Hub » Wed Dec 17, 2008 2:30 pm

This is a fascinating thread. I'm looking forward to reading the research by Zamboni.

If blockage of blood vessels in the brain/spine is a big problem in MS, as Zamboni's research seems to suggest, maybe the mechanism by which LDN works (assuming it does work, as anecdotal evidence suggests it might) is that naltrexone increases angiogenesis (i.e., the development of new blood vessels).

Here's a link to one abstract about naltrexone's affect on blood vessels:

http://cat.inist.fr/?aModele=afficheN&cpsidt=13567004

I haven't done too much research yet on the connection between LDN and angiogenesis, but it does seem to be a fruitful area of inquiry.
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Postby Hub » Wed Dec 17, 2008 2:48 pm

Sorry for the double-post, but I also want to link an interesting abstract about the association between angiogenesis and inflammation:

http://rheumatology.oxfordjournals.org/ ... act/44/1/7
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Postby mrhodes40 » Wed Dec 17, 2008 5:07 pm

Cheer, Fascinating!
Thank God. Finally something that shows 100% of something in MSers and 0% in others. Something verfiable and repeatable. This is what is EXPECTED when we get to the REAL cause of MS, and it has been conspicuously absent in other research related to MS.

Cur-o, I can't wait to see the results!! I will be checking to see what the scoop was with bated breath.......

Most MSers have lesions in perivascular areas, might there be blood extravasation merely from back pressure? And might that extravasation itself be the key? it ties in the idea of iron being present in the lesion area.

And the fact of standard therapy treated vs non treated people showing no difference is significant in that with time all of the standard therapies seem to fall short and people eventually progress in spite of good inflammatory control.
(I am the poster child for that personally).

In the case this theory is correct, what might be happening is the the extravasations take place per usual but the body is not able to respond with inflammation because of the standard therapy.

Voila! no standby damage from the inflammatory cells in the delicate brain tissue. People do seem to do a little bit better, but the iron and other extravasated blood componenets that do not belong there are still there, and will cause damage of their own....eventully

But why might the blood vessels be damaged like that so that this reflux happens?

maybe this is a likely answer; we only need look at the heart for other vessels that have plaques that result in problems, weakening, thickening, hardening, blowouts and extravasation. Atherosclserosis, plaques and weakened blood vessels............

.....which may very well be caused by the germ Chlamydia pneumoniae.

http://www.cdc.gov/ncidod/eid/vol7no5/oconnor.htm

One of the main arguments for the idea that MS might be germ related is the fact that CPn specifically causes blood vessel problems and plaques occur next to vessels.

Evidence that Chlamydia pneumoniae has a causal association with Multiple Sclerosis: a brief review.

C pneumoniae is known to patchily parasitize the cells which line small blood-vessels, causing episodes of vasculitis. This is a local inflammatory process characterised by tiny punctures in the vessel walls and leakage of blood-components into the surrounding tissue space. It can be visualized directly in the retinal veins, where the vessels appear to be coated with a thin greyish sheath. This sheath is comprised of T lymphocytes. A very similar pathology takes place in the brain in early MS. The association between sheathing of retinal veins and MS was first made in 1944. The anatomical distribution of lesions within the brain in MS is often centred on small veins; elongated plaques may follow the sinuous curves of the vessels they surround. [Esiri MM, ed. Oppenheimer's Diagnostic Neuropathology, 2nd edition, 1996 Blackwell: 256-9.]

From here
http://www.davidwheldon.co.uk/ms-treatment1.html

Now I am totally in the camp that the CPn germ theory of MS causation is an unproven theory, I'm not here to pretend this paper you posted proves anything about CPn, nor am I here to downplay the incredible blood 'reflux' findings, but I find the association too interesting to not comment on.

Thanks for posting this paper, I am very interested in this work.

marie
Last edited by mrhodes40 on Wed Dec 17, 2008 8:40 pm, edited 2 times in total.
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Postby cheerleader » Wed Dec 17, 2008 5:48 pm

mrhodes40 wrote:Cheer, Fascinating!
Thank God. Finally something that shows 100% of something in MSers and 0% in others. Something verfiable and repeatable. This is what is EXPECTED when we get to the REAL cause of MS, and it has been conspicuously absent in other research related to MS.

Amen.

Most MSers have lesions in perivascular areas, might there be blood extravasation merely from pressure? And might that extravasation itself be the key? it ties in the idea of iron being present in the lesion area.

Dr. Schelling wrote about these lesions and his observations of venous abnormalities over thirty years ago. I mention him and his web site above. Read his paper on the venous abnormality effects on MS lesions. brilliant! The Zamboni study mentioned that pressure was not a major contributing issue...it was blockage and reflux.

One of the main arguments for the idea that MS might be germ related is the fact that CPn specifically causes blood vessel problems and plaques occur next to vessels.

Thanks, Marie...I wondered if this discovery might implicate cpn. Appreciate those links. The next step is to see if Cure and my husband and others have similar venous reflux and vein blockages detected by doppler. We'll see a vascular specialist after the new year. I wonder what causes those stenosing lesions...thrombin, coagulation issues, bacteria, genetics? Is there something in MSers blood which has heretofore not been identified? And if those lesions are removed, correct blood flow is restored, will MS be healed?
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Wed Dec 17, 2008 5:50 pm

Wonderfulworld wrote:Cure that's great your neuro is open to reading the study.
I have beaten him (and especially my GP) down with sooooo many CRAZY, hair-brained, half baked ideas over the years, he is now probably a pushover for something backed by clinical research. :) or he just took it to get me out of the room... :( we will see if he reads it.


Wonderfulworld wrote:Just one thing struck me. If MS dies down so well in trimester 3 of pregnancy, I wonder how this venous insufficiency works....

cheerleader wrote:...and needs more than aspirin or enzymes.

jimmylegs wrote:zinc drops during the course of pregnancy and i think it's because the endocrine system is hogging it all.

Hub wrote:If blockage of blood vessels in the brain/spine is a big problem in MS, as Zamboni's research seems to suggest, maybe the mechanism by which LDN works (assuming it does work, as anecdotal evidence suggests it might) is that naltrexone increases angiogenesis (i.e., the development of new blood vessels)

I think we all need to be careful not to "throw the baby out with the bath water". I could be very wrong, and probably am, but at this early stage, i think if it is duplicated etc etc etc then this is just one piece of the puzzle. The general "belief" I think? most people have is that MS is a condition with multiple factors combining. For example, one chain of thought is that there is a genetic pre-disposition AND an infection such as EBV and/or CPn. Could this BE a physical presentation of the genetic pre-disposition? I don't know, but its an interesting thought. Could having this, followed by an infection start the domino of the MS disease process? waaaay to early to say, but interesting to ponder, and definitely requires proof or refute by the rest of the medical community.


mrhodes40 wrote:Thank God. Finally something that shows 100% of something in MSers and 0% in others.
from another thread also discussing this paper.http://www.thisisms.com/ftopicp-49088.html#49088

CureOrBust wrote:
cheerleader wrote:None of the controls (healthy people AND people with other neurological diseases) had venous reflux. It is UNIQUE to MS.
Again, I think I may of lead partially to this misconception :oops: however, on my second read, I noticed that the people who were previously identified as having some issue:
Zamboni's study wrote:...48 controls not affected by neurological diseases (Tab. Ib), but scheduled for venography (HAV-C) for other pathologies:...

In table II, 7 of the controls failed on test 4, and 25 of the controls failed on test 5. However, only the 48 controls previously scheduled for a HAV-C had the HAV-C, so it is clear that it was only these previously identified as having something wrong with their flow, failed any of the non-invasive tests; apart from ALL the MS patients. Have I read it right?
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