Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Fri Apr 03, 2009 10:18 am

Mark-I am exactly the same can't regulate my body temp at all. I too am very captured by the idea of CCSVI.

If nothing else it is up to the autommne MS apologists to explain why MSers have reflux and how that develops....DOWNSTREAM from the brain. How can inflammation in the brain reach ahead of the brain through the circulation and cause a stenosis? It defies logic.

You could argue that the inflammed areas in the brain are so inflammed and the lesions so scarred that it stops circulation from getting through well and the blood backs up from there.....but that is BACKWARDS from what is happening. that would be blood backing up on the other side of the brain in relation to circulation, as in the blood can't get IN. It is friday. Dr Z talks Monday......

Thanks for thinking of us over here Ken. :D

The paper you linked is a detailed procedure for a lab test in which they took endothelium (blood vessel membrane) and grew it in very controlled conditions in the lab. They then subjected it to hypoxia, low oxygen, conditions for 48 hours. After that they tallied the upregulation and adhesion of some stuff noting that NFkB ( an immune factor that body uses in stress of any kind like germs or injury)was very much "grabbed up" (increased affinity) by the endothelial cells after this treatment.

I am far less versed in endothelium than Cheer as it is her focus, but it is worth noting that hypoxia of 48 hours is a problem you might see after a stroke or something like that because the artery has been blocked off in that situation and oxygen is not getting IN. In the CCSVI model the blood is not getting OUT on the venous side, which results in a backup.

It still seems plausible that there would be some impact on oxygenation because if it is true that the veins are backed up, then it stands to reason the arteries may have a hard time delivering the 02, and in fact the perfusion studies on MS brains, discussed on this thread about 10 pages ago, show that there is decreased perfusoin in MS brains and slower mean transit time. But I am not sure that frank hypoxia for 48 hours is at all similar to what would be happening in this model if it is correct.

Frankly if Dr Zamboni's material is proven, there will be vast amounts of study along these lines. It will open a whole new field of research because once you have had this event of plugged up veins and this backup, the area, including the endothelium and BBB, has been permanently changed. research such as this showing what happens after some traumatic event to the endothelium and the consequences of such a thing will be important.

It is not going to be 'get the vein fixed and go on your merry way never to think of it again.' There are going to be all kinds of things that need to be addressed. My personal interest is that germs like CPn that have been shown in so many studies to be in MS brains are probably there as an aftermath of this kind of change to the endothelium in the area of the MS lesions. Others will rightly point out that ebv is there often as well, and that the injured lesion are well known to be full of all kinds of immune factors.

assuming the Z model is proven, How will the endothelium be healed after the vein is repaired? Is it permanently damaged or not? CAN the brain lesion behind it be healed at all? Will such healing be complete or partial? Will the ebv and CPn, mycoplasma, or other things that may have gotten in while the endothelium (BBB) was damaged and open set up shop and simmer in the brain? How about the inflammatory cells that got in, will they be compartmentalized behind the BBB and simmer in there? Is there any autoimmunity after the fact caused by the aggressive effort of the body to deal with the junk that got into the brain and heal it? Every bit of this will need to be looked at.

(FOr the positive I will offer that polio usually healed quite well. Some were unfortunate, but most had a lot of healing. Many stroke survivors also heal a great deal of repair and healing even into old age.)

I think that some people find this theory naive because they have not considered the wider implications of what it would really mean if MS is caused by this venous problem. It is still going to be very complex, the MS lesions themselves are well studied and very full of junk that does not belong there. This is not going to change that completely simply by fixing the vein. I know for certain that Dr Zamboni's team sees it as complicated and that they are very aware of the fact that other things are likely involved.

But if this is right what it does mean is that a cure can never be had simply with pharmaceuticals and all of the research to date is missing the target. that is why it is s critically important that it be thoroughly invstigated immediately.
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Postby notasperfectasyou » Fri Apr 03, 2009 11:17 am

Thank you Marie. I'm really glad you're championing this. If you don't mind I'll leave stuff here for you and Cheer from time to time. I'm very focused on Apoptsis right now, but when I find things to share - I try to share them. I'm trying to understand how unique CPn's ability to prevent apoptosis is. Have you by chance implicated LPS in CCVI? Ken
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Postby skydog » Fri Apr 03, 2009 11:43 am

I am hopeful we are at the turning point in thinking of what truly needs to be done in terms of healing. I feel that by staying active and healthy that it puts me way ahead of the game. Never gone very far into the drug treatment end and still have all systems working. I feel that a two prong approach is what is in the future. Kick out the bugs treat the circulatory system. Get to the root of the problem with the right combo of diet exercise and supplements. Wouldn't it be nice Baby aspirin, garlic and strong cellular communication from Positive thought. Adios ms Keep posting the good stuff you guys. Learning lots… Stay positive we will prevail. Mark
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Postby mrhodes40 » Fri Apr 03, 2009 4:06 pm

I am grateful to Dr Zamboni and the entire team at Ferrara. They are the Champions! Thank goodness they are looking at this.

I am also dying to see the research done by Dr Anonymous and his team who are replicating the Z work, I cannot wait until this replicating work comes out and is published. I do know that they started a cohort and are having success. But for obvious reasons people do not come out and blab what they are doing before it is done. But I am grateful to know it is on its way.

.... Cheer's husby is getting doppplers AND venograms on April--27? if remember the day right. AND venograms, notice that part: it's a big deal because venograms have a little risk to them, and her doctor is a BIG BIG venous guy, a very prestigious well published researcher. 8) He is really gung ho; enough to do venograms on the first visit. Her report is going to be very important.

If everyone mentioned on this thread, including the professor of vascular surgery I contacted, did a paper of some kind we'd have a lot more information in a few months. I guess my interest is in the grass roots kind of angle. I'd like to think that the more people that can get interested the more possiblity there is for pushing this to the fore sooner.

If this is a result of MS somehow then we need to know that and the MS autoimmune theory will have to account for this venous anomaly. It may need treatment just as a side effect of autoimmune MS in that case.... :?
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Postby mrhodes40 » Mon Apr 06, 2009 3:16 pm

A friend sent me this one FOUND HERE

Chronic venous insufficiency - a potential trigger for localized scleroderma.Ludwig RJ, Werner RJ, Winker W, Boehncke WH, Wolter M, Kaufmann R.
Department of Dermatology, Klinikum der Johann Wolfgang Goethe Universität, Theodor-Stern-Kai 7, Frankfurt am Main, Germany. r.ludwig@em.uni-frankfurt.de

Localized scleroderma is a cutaneous disease that is characterized by an initial inflammatory response, followed by sclerosis of the skin. The cause of localized scleroderma has not yet been determined. Seifarth et al. reported two cases of localized scleroderma at sites of chronic venous insufficiency. We document here three more patients in whom localized scleroderma was located at insufficient veins. Treatment of underlying chronic venous insufficiency (CVI) leads to a substantial clinical improvement of scleroderma at the site of insufficient veins, but not elsewhere. Experimental data support the concept of chronic venous insufficiency creating a microenvironment, which may lead to localized scleroderma. Local hypoxaemia, which is present in CVI, induces the release of endothelium-derived cytokines, such as IL-1. Subsequently, expression of endothelial adhesion molecules and consequently leucocyte extravasation are induced. Infiltrating leucocytes secrete a number of inflammatory mediators, including transforming growth factor beta, which is a potent stimulus for collagen synthesis. Therefore, it may well be that CVI is a potential trigger factor for localized scleroderma. In addition, localized scleroderma may only develop if a certain amount of trigger factors are present - and resolves if one or more of the contributing factors (i.e. CVI) can be treated


SO here is an "autoimmune" disease triggered by chronic venous insufficiency. And hugely relieved by relieving the venous issue.

Notice that they speculate that it may resolve if the CVI can be treated...and that in the five patients seen in the case study repair did work to alleviate the "autoimmune " disease in those areas affected by CVI........ :D :D

Today, Monday April 6, Dr Zamboni spoke on the liberation procedure in Charing Cross. As soon as someone gets ahold of the slides and presentation online we'll all enjoy seeing if it appears that he has been able to have any success by alleviating MS by relieving venous insufficiency with treatment.

Let's hope his repairs are as well shown toalleviate the problem!
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Postby mrhodes40 » Mon Apr 06, 2009 4:34 pm

Here's the description of scleroderma from Fred Hutchison
Scleroderma (systemic sclerosis): Fast Facts

--Scleroderma is a chronic autoimmune disease, in which the body’s immune system mistakenly targets healthy cells for destruction.
--The hallmark feature of scleroderma is hardening of the skin.
--Scleroderma can range from a localized disease that primarily affects the skin to a more serious illness, known as systemic sclerosis, that causes damage to multiple parts of the body, including the joints, digestive tract, lungs and kidneys.
--Like many other autoimmune diseases, scleroderma occurs much more frequently in women than men, with about four times as many women as men developing the disease.
--Although the cause of scleroderma is unknown, genetic and environmental factors are thought to play a role in the disease. Scleroderma does not often run in families, but there may be certain gene variants that increase likelihood of the disease.


Sound familiar?

The study one post above is very strong support for the Zamboni model.

If another so called autoimmune disease can be triggered locally by the changes in the endothelium brought about by CVI causing sclerosis in the tissue, is it really so hard to imagine that it could happen in the brain, reflux happening caused by CCSVI then sclerosis of the brain?
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Postby Lyon » Mon Apr 06, 2009 4:43 pm

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Last edited by Lyon on Sat Nov 26, 2011 12:49 pm, edited 1 time in total.
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Postby cheerleader » Tue Apr 07, 2009 12:58 pm

Dr. Zamboni gave his presentation at Charing Cross, and here's an interview from the symposium.

Paolo Zamboni, University of Ferrara, Italy, presented the rationale and preliminary results of an endovascular treatment for multiple sclerosis on the third day of the CX Symposium.

Zamboni explained that, though multiple sclerosis is an inflammatory neurodegenerative disease of the central nervous system of unknown origin - widely considered to be autoimmune in nature - it is strongly associated with chronic cerebrospinal venous insufficiency.

This link was supported by Zamboni’s recent study of 65 patients affected by clinically defined multiple sclerosis, along with 235 "healthy" control subjects. Though this study left open the question as to whether venous stenoses are the cause or product of multiple sclerosis.

"I cannot answer this at the moment," Zamboni told CX Daily News. "The interesting thing, though, is that when you can treat the stenosis, you have, in time, an improvement in those patients. Especially in the first phase."

Zamboni’s current, ongoing study is exploring the effects of endovascular treatment for stenosed jugular and azygous veins in a cohort of 100 multiple sclerosis patients, with follow-up to one year.


"I think that this is really promising," he said. "I have good cooperation with the neurologists in my country. And I think that this could be promising if neurologists and vascular people work back to back on this."


link

Glad to hear Zamboni is seeing improvements in the patients he's treated with endovascular surgery. Also glad to see he is doing a continuing study with 100 patients over the next year. Looks like he'll be working with the neurology community (and not going "rogue") which will help his research and bodes well for future collaboration with vascular doctor and neuros, if his research is replicated.

Good news,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Apr 07, 2009 1:01 pm

Bob said
if it makes you uncomfortable....


I can only say :P

Isn't it an exciting interview?

100 patients, this is no whimpy study he's doing to see if endovascular repairs help, once again, the results will be significant.

Dr Zamboni's actual presentation is going to be linkable supposedly with slides and the whole thing. I've asked for the link from the coordinator of the symposium so we can post it.....
I cannot wait!
marie
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Postby peekaboo » Tue Apr 07, 2009 2:11 pm

Hi guys -

Do "they" perform vein repair when obsrtuctions occur similar to arteries? whether one had ms or not? what are the obstructions? fat, platelets/ collapsed veins, NO? My last blood work a month ago all came within the normal ranges. Cholersterol, bood counts etc. Doc says I a very healthy excluding the MS

Cheer - what are venograms and what are the risks? we hope you & hubby have a successful appt. later this mo.

Holly
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Postby cheerleader » Tue Apr 07, 2009 2:43 pm

Hi Holly-
A venogram is kind of like an MRI with contrast-

A venogram is an X-ray test that takes pictures of blood flow through the veins in a certain area of the body.

During a venogram, a special dye (contrast material) is put into your veins so they can be seen clearly on an X-ray picture. A venogram looks at the condition of your veins and the valves in your veins.

A venogram can show the veins in your legs, pelvis, or arm; the veins leading to the heart; or the veins leaving your kidneys. Venography also may be done to find a blood clot (deep vein thrombosis, or DVT). Blood clots in the deep veins can be serious because the clot or part of it can break off and move through the blood vessels. A clot that blocks an artery in your lung (pulmonary embolus) can be life-threatening.


http://www.webmd.com/a-to-z-guides/venogram

The risks would be an allergic reaction to the contrast material, damaging a vein, or developing a clot. Patients are given a blood thinner after treatment. I'll be stopping Jeff's blood thinning proteolytic enzymes and aspirin therapy, to prevent excessive bleeding. Jeff had an issue with clearing the gadolinium thru his system after MRIs, so we'll make sure to give him lots of fluids when he's done.

Jeff is scheduled for MRIs of head, neck and chest, complete dopplers of jugular and azygos veins and venograms (if needed). It will be a long day (for him!) Thanks for your good wishes-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Apr 07, 2009 2:57 pm

Hi PKB
The exact Liberation procedure is proprietary as of yet, but it is some kind of endovascular repairs. Usually this entails them threading a catheter up from your groin area or something like that and then doing what needs to be done at the site with the tiny tools in the catheter tip.

These have some risk because there can be clots and obviously it would be possible they'd need to do a whole open surgery of some kind if there was a complication, but usually such procedres are relatively safe and relatively easy for the patient.

These would likely be similar to arterial repair.

I have not heard what they obstructions actually are. They may be something like the plaques you see in atherosclerosis which have CPn, a germ, in them, or theymight be congenital things. I hope Dr Zamboni says something about that side of it in his paper.

As cheer posted, A venogram is where they inject dye into the vein and it shows up then on what is essentially and x-ray machine. They can watch the dye go in and also see the exact outline of the vein.

At the end of this paper, BELOW the references, are Zamboni's venograms.
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

You can see what the trouble is. It is not debatable that these people have a problem. What is debateable is wheter it caused MS, complicates MS and whether repair will help MS at all.

Looks like it might be helping people to do repair according to Zamboni's comments in the interview above

Still experimental, but fun to watch develop.
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Postby mrhodes40 » Wed Apr 08, 2009 5:26 am

Bummer news:

I got an email from the coordinator of the cxsymposium and they are posting the slides and the presentation in 6 weeks :cry:


.....and for a fee :x
I do not mind paying for it as the symposium is taking the effort to assemble the presentation into an online download, but many TIMS members will prefer not to pay for something so early in its experimentation phase-less chance to talk about it! darn!

However the fact that in Zamboni's interview he says it helps to do venous repairs bodes well for the information in the actual presentation. Perhaps he will reveal MRI information or repeat dopplers on treated people, or perhaps he will just present the hypothesis and review his three studies already published which we have discussed extensively on this thread already. It'll be fun to see....eventually

But oh man: 6 weeks! I was hoping to share that presentation with my vascular doctor right away, so he can have more to think about. :(
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Postby CureOrBust » Wed Apr 08, 2009 5:47 am

It also appears to have gone quiet in regard to the centre in the US? or is it really just an "outpost" for his centre in italy?
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Postby cheerleader » Wed Apr 08, 2009 5:57 am

CureOrBust wrote:It also appears to have gone quiet in regard to the centre in the US? or is it really just an "outpost" for his centre in italy?


Hi, Cure. The Jacobs Neurological Institute at State University at Buffalo was never set up to be a "center" (at least not yet) but they did send four of their MS patients to Ferrara to have the Liberation technique endovascular surgery last year. Zamboni will be writing about their cases in the next year, as well as the other 100 patients he will treat.

The wheels of medical research continue to turn (but slower than most would like including me!) But this is not going away-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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