Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Mon Dec 29, 2008 3:19 pm

Cheer,
I am really glad you are on this. Wow, the possibilities are interesting aren't they? Thanks for doing all this. You and Dignan have really brought this material out for us and I am really grateful

I have my packet about ready to go to the printers: I can just email it and they'll send the finished packet back to me--I happen to be moving too so amidst boxes I type on my computer.... Well, timeliness is not my thing I guess, I have that still healing broken arm too. If this thread information was not going on in my life right now I would not be feeling very lucky, but the hopefulness I feel from this is great! I feel positively blessed.

I used:
Zamboni 2008 Chronic Cerebral Venous insuff.....
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Zamboni 2008 Doppler Haemodynamics..
http://www.bentham.org/cnr/openaccessar ... /006AG.pdf

Zamboni 2007 Intracranial venous haemodynamics..
http://www.ms-info.net/Intracranial_Ven ... erosis.pdf

C. Chung 2008 review Jugular Venous Reflux
http://health.elsevier.com/ajws_archive ... 3A4703.pdf

Zamboni 2006 The Big Idea (I bought this one)

Schelling
http://www.ms-info.net/ms_040504.pdf

Abstracts to support the overall idea that Dignan posted on this thread earlier:
7 tesla...
Raised venous pressure...
Hypothetical Molecular mechanisms...

All of this is about 220 pages, 125 of that is the Schelling paper, a substantial committment on the part of the vascular/surgeon reader.
Anything I missed?
marie
EDIT: I added links to the abstracts available free on the net. The one I purchased is available for $15 USD. The abstracts Dignan had posted right in this thread. I copied and pasted those into a word document , saved it in a file, and made a copy of that as an adjunct to add weight to the idea.
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Postby cheerleader » Mon Dec 29, 2008 4:15 pm

Marie-
That packet looks perfect. This is a good example of what people can print out for their vascular doctors, if they want to have the doppler non-invasive screening done. I've been e-mailing the articles Marie lists to the doc we're consulting with, and he is sending them along to his vascular dept. colleagues.

University vascular depts. may be a good place for people to ask for this screening, since these doctors are up on the diagnostic tools and research, and are used to thinking outside the box.

I'm so glad you are feeling hopeful and energized, Marie. Sorry for the difficulties with your broken arm...heal quickly! Better days ahead.
Happy New Year
AC :D
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DIM » Tue Dec 30, 2008 2:01 am

Don't call me lazy :oops: but as you have posted various versions of each researche, could someone post the links to the above so everyone could print them and send to his doctor?

I am going to visit our neurologists (Dr Karousis - if he isn't at Israel - and Dr Mylonas, both known from their publications) and ask for the doppler scan, sorry if I am getting boring but is anything else that should ask from them as my English don't help me understand every single paragraph from Zamboni's researches?
Thanks!
Dim
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Postby CureOrBust » Tue Dec 30, 2008 3:48 am

My GP was back in his office today and called me regarding setting up my tests. He had spoken with his contact that performed ultra-sounds in a nearby clinic. The radiologist (or whatever) told him that "yes he can perform these tests, but they are available in the hospital and not on an outpatient basis". ie he could not do them in his clinic. :evil:

Luckily, yesterday I was looking for a fall-back in case he wasn't open till mid January or something, and also to check if I could get the tests without a Dr referral. I came across a group of related vascular clinics (Sydney Vascular Laboratory, Sydney Endovascular Specialists, Vascular Associates Camperdown, Camperdown Vascular Laboratory). I tried calling them, but they were closed for the Holidays till 5th of January. I Looked at the first ones website, and it looked to me they could do the job. I downloaded their "request" form, and my GP filled it in, and checked the "Other" box for requested tests, and attached the page with the list of the five in Zamboni's latest paper (with the full details).
1. Reflux in the IJVs and/or VVs in sitting and supine posture;
2. Reflux in the DCVs;
3. High resolution B-mode evidence of IJV stenoses;
4. Flow not Doppler detectable in the IJVs and/or VVs;
5. Reverted postural control of the main cerebral venous outflow
pathways.
i.e Page 8, which is titled with "Study of cerebrospinal venous drainage".

I will also take in the "Doppler Haemodynamics of Cerebral Venous Return" pdf by Menegatti and Zamboni. in case they wish for further clarity.

These labs appear to have the latest machines from Philips :) Maybe the other guy didn't have the "latest" in his office. :?

so the place i will try to get it done at is Sydney Vascular Laboratory

Which has their request form at Request Form

You can browse their site, it has some more info about the general testing they do; with images. Without to much you will find yourself at one of the other related web sites.

So, hopefully on Monday the 5th, I will have an appointment (not too distant in the future), or a much better idea on who or how to get these tests done. Watch 8O this space, I will keep you all informed how I go one way or the other.
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Postby chrishasms » Tue Dec 30, 2008 9:11 am

I have my appt with my GP on Fri the 12th. I already have a feeling I know the vascular guy I will be going to and he's good.

Thank you Cheerleader. I agree with you Cheer. Let's get any blockages out of there before I get nuked this time. Then no more back flow.

My great uncle actually at one time had to have surgery on his legs and neck to clean his veins out. He ended up dying from something when he was darn near 80, but strangely enough, he died from something that for the last 2 years he had days when he could move and days he couldn't and we know he didn't have a stroke.

HMMMMMMMMMM...late life MS???
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Postby chrishasms » Tue Dec 30, 2008 9:23 am

So let me see if I get this straight...you want me to fly you there, serve you coffee in the plane, wait while you have your meeting, then fly you back?

Just kidding...remember those commercials lol??

So there shouldn't be any blood in any cerebral fluid but in folks with MS there is. But if we take care of these blocks, it will prevent the back flow? Without the back flow then, in theory, no more blood in the BBB stops attacks from happening??

I hate MS it makes it hard for me to read those darn articles. 2 months ago no issues.
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Postby cheerleader » Tue Dec 30, 2008 10:30 am

DIM wrote:Don't call me lazy :oops: but as you have posted various versions of each researche, could someone post the links to the above so everyone could print them and send to his doctor?


Dim, you aren't lazy...this is difficult stuff, and it's in English-
Print these out for you doctor- These are Dr. Zamboni's studies

Zamboni 2008 Chronic Cerebral Venous insuff.....
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Zamboni 2008 Doppler Haemodynamics..
http://www.bentham.org/cnr/openaccessar ... /006AG.pdf

Zamboni 2007 Intracranial venous haemodynamics..
http://www.msinfo.net/Intracranial_Veno ... erosis.pdf

Dr. Zamboni is a specialist in venous hemodynamics and doppler technology. He e-mailed me this morning, and said he is a bit afraid that neurologists will try to discredit him by saying his scans are not reproduceable. He realizes they have alot to lose by admitting that MS begins as a vascular disease. He is working furiously to have a surgical protocol in place in one year, called the Liberation procedure. It is available only to Italians, at first, due to strict govt. regulations. He believes his surgical protocol is better than drugs currently available. After completing these surgeries on MS patients, he will publish the results. He is also developing a training course for vascular technicians around the globe, thru the non-profit Hilarescere Foundation. For obvious reasons, he is a bit protective and proprietary. He doesn't want the naysayers speaking up without the complete story.

I think Cure's approach is the correct one...what we're doing is finding a vascular dept. open to reading and replicating Zamboni's work. This is a relatively new field. Don't expect your neuros to jump up and down in support of this. It goes against everything they've been taught, and at its root, medicine is a business.
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 Dec 30, 2008 10:31 am

Hi Chris
this is not a first glance kind of thing. Read the pepers, let it jell, then go over it again. It becomes more clear the more you go over it. Do the whole thread a couple of times and read the papers.

In the regimens section Cheer has posted an endothelial regimen and the last few pages of that have more of this information in it also.

The Schelling paper outlines the entire history of MS pathology in almost boring detail, but he carefully builds he case for venous issues being causitive in MS and documents how the medical literature has described these venous problems over and over again.

Then Zamboni comes along and shows these venous issues exist in living MS patients... in two large studies. All of the MS patients showed at least 2 out of 5 possible venous problems that are not in normal people. Some other people had one issue, but only MS patients has 2 or more and ALL of them had it, where no other people had that, including people with other neurological diseases and other people with other vascular diseases, who you might expect to have some abnormalities.

What does it mean to us with MS? I do not know, but I hope it means that immunosuppression is over for us and that this is like a venous ulcer in the leg that happens to be in the brain...something bad but potentially fixable to a degree. The papers that talk about iron in the brain support that idea.

But bottom line is that it is hard to believe this has been ignored for so long and it is such a big kind of obvious thing.

Like why spend decades wondering in the medical literature why the BBB is open when the blood vessels are known to be all damaged and stretched in the area where lesions are?

why has that been ignored? Schelling proposes it is because the early giants of neurology were focused on arteries and totally ignored veins, creating a culture where that was what was done, as if veins were not significant for some reason.

Well tell that to a person with hemmorhoids, vericose veins or venous ulcers! Tell them that these are not really problems because it is, after all, only in the venous system.

The least we can expect from awareness and discussion of this venous issue is a decent explanation of how or why this anomaly occurs in what is supposedly an "autoimmune" disease.

Yet if this is the truth about all MS patients then most of what we know about MS makes sense....with out the immune system being faulty at all.
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Postby chrishasms » Tue Dec 30, 2008 10:37 am

It would make sense why us HiCy'ers are experiencing recovery when we have no blood aka anemic and what not. If there is nothing bad to cross the BBB how could we get worse?

Wow

Wowowowowowowowowowowowowow. It just doesn't makes sense, that it makes sense, MS could be so simple.

I can't close my mouth since I have seen this. I'm just dumbfounded.
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Postby mrhodes40 » Tue Dec 30, 2008 12:35 pm

Yeah me too.

It may not be the whole enchilada, like perhaps once the BBB has been open like that other things are needed to clean up. Cheer points out that chelators can perhaps leech out the iron that seeped in, I have wondered if abx are needed to kill the germs that likely crossed over. B cells take ebv everywhere they go, does that need cleanup now that they've gone over? Antivirals?

Potentially this is still pretty complicated, if it is as one paper suggested like a venous stasis ulcer but in the brain it is not likely going to be an easy "get a stent it's all over" kind of thing. Or maybe it will be. :D I am excited to hear what Dr Zamboni reported at the cx symposium at Charing Cross in April.

Another thing though, I can see how stem cells, not with chemo just the kind people get in a bolus, might help. With the altered dynamics like that I bet they get right in to the damaged area....
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Postby mrhodes40 » Tue Dec 30, 2008 12:59 pm

said he is a bit afraid that neurologists will try to discredit him by saying his scans are not reproduceable. He realizes they have alot to lose by admitting that MS begins as a vascular disease. He is working furiously to have a surgical protocol in place in one year, called the Liberation procedure. It is available only to Italians, at first, due to strict govt. regulations. He believes his surgical protocol is better than drugs currently available. After completing these surgeries on MS patients, he will publish the results


I do not blame him a bit! Not one bit!

I can just imagine it would be possible for someone with a lot to lose....lets call it Tivagen.... to fund studies by people showing how these vascular studies are normal in people with MS. Tivagen could even do the study themselves and just pay a MS researcher to "co-sign" it, this is a common practice.

This would result in a lot of hemming and hawing, a lot of "Maybe...but lets study it more..." Even a few more years of doubt would be tremendously beneficial-- uh, to the bottom line of Tivagen I mean.

The downside in what Cheer wrote is that it suggests it might be kind of difficult to see the abnormality, or it seems to take a certain kind of training to be good at detecting it. It sounds like it is possible to mistake a abnormality for being a normal finding.

This will be the risk of running off assuming every vascular guy could just do this tomorrow; some will get falsely "normal" results and what do you do with that? I guess if that's what you get from your doppler study you go ahead and wait for Zamboni and request evaluation again from one of his "certified Liberation technicians" when they are out there available.

I've sort of been picturing this in my mind's eye as a gross abnormality, but perhaps it is often much more subtle. OTOH, did you see those twisted tortuous veins at the bottom of the Zamboni study?? below the references. Holy cow, I keep thinking of one of those things in my body...

...It makes me want treatment tomorrow
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Postby Lyon » Tue Dec 30, 2008 2:49 pm

..
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Postby CureOrBust » Tue Dec 30, 2008 9:33 pm

cheerleader wrote:Dr. Zamboni is a specialist in venous hemodynamics and doppler technology. He e-mailed me this morning, and said he is a bit afraid that neurologists will try to discredit him by saying his scans are not reproduceable.
And thats one of the reasons I did not go through my neurologist. As for the "reproducibility" of his results, that's what science is all about. Published articles are reviewed for one reason to ensure the results should be reproducible. All i can hear in the back of my head is "COLD FUSION". Many made claim to achieving it, but none were reproducible. And it is still out of reach of science.

The tests listed in his paper, he said himself, are simple enough. When I researched into finding someone locally, I kept stumbling across familiar terms and procedures I had read in his paper. I think those in the vascular field specifically will follow his tests fairly easily. But I shall see for myself, and discuss it with them. The machine the lab I am going for actually performs a lot of the readings automatically, and it appears simply to be aimed at a specific location (which is listed clearly in the papers). Even if they fail, I will organise another consult to understand all the possibilities of why. But I will not be making or taking "excuses".

I do not expect them to read/agree with Zamboni's work, all I expect of them is to duplicate the tests, and let the cards fall where they may. Remember, I am NOT going to a neurologists, but to vascular specialists, if anything its in their interest, in a way. If I duplicate Zamboni's results, I will be having an interesting conversation with my neurologist.

Also, I will be going to what appears to be a large, well funded, clinic which is closely linked to one of the largest and respected hospitals in the largest city of Australia, with a consulting team which appeared to be involved heavily with research, publishing papers and furthering their field. They may even know Zamboni, or he may know one of them. I have personally experienced this with my neurologist who has worked around the world and his consulting rooms are shared with prineas and barret, I think. Those in their respective fields have often crossed paths previously.

mrhodes40 wrote:...why the BBB is open when the blood vessels are known to be all damaged and stretched in the area where lesions are?
Could you direct me to this please? I thought it was accepted the lesions are near the arteries/veins, but I cant remember reading that they were specifically stretched at that point?

mrhodes40 wrote:The least we can expect from awareness and discussion of this venous issue is a decent explanation of how or why this anomaly occurs in what is supposedly an "autoimmune" disease.
If it is repeatable, then I couldn't agree more.

mrhodes40 wrote:It may not be the whole enchilada, ...
Yes, one step at a time. And hopefully this one will be one forward, and not two back...

mrhodes40 wrote:I do not blame him a bit! Not one bit!
Sorry to sound all hippy like, but I do. Get the information out, and let the world sort itself out. If he had found the cure for cancer, it is not the sort of thing you keep a secret of. Human kind first. :oops: hippy... hippy... hippy...

mrhodes40 wrote:The downside in what Cheer wrote is that it suggests it might be kind of difficult to see the abnormality, or it seems to take a certain kind of training to be good at detecting it. It sounds like it is possible to mistake a abnormality for being a normal finding.
All i hear are "cold fusion" excuses. Science is science, and part of that is reproducibility. Make the information public. OK, out comes the hippy again.

mrhodes40 wrote:did you see those twisted tortuous veins at the bottom of the Zamboni study
I am certain he provided the worst looking photos. In the paper he talks of the reflux involving a backward flow > 0.5s. Which on reading other web sites for other conditions such as varicose veins, and medically it appears to be a standard accepted criteria.

mrhodes40 wrote:...It makes me want treatment tomorrow
I know how you feel, however, right now I want the diagnostic tests YESTERDAY!

Just to be clear, if my team fail to duplicate the results, I will not think Zamboni's work as being totally discredited. However, if they duplicate it...
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Venocentric lesions

Postby lyndacarol » Wed Dec 31, 2008 6:54 am

Cure--You responded to Marie with
Could you direct me to this please? I thought it was accepted the lesions are near the arteries/veins, but I cant remember reading that they were specifically stretched at that point?

I can't remember the source right now (I have read this in several places.)--one might have been T. Jock Murray's book--; IT HAS BEEN KNOWN AND ACCEPTED FOR A LONG TIME THAT THERE IS A DAMAGED BLOOD VESSEL AT THE CENTER OF MS LESIONS; lesions are venocentric.

And even fairly recently, this was considered here:http://www.thisisms.com/ftopict-2411.html
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Postby Artifishual » Wed Dec 31, 2008 8:20 am

I have been watching this thread for awhile now and just looked at my Dr.'s profile and come to find out he is a vascular neurologist. Might be time to give him a call. Great thread guys can't wait to hear what this leads to.



Specialties: Neurology, Vascular Neurology
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