simple CCSVI

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

simple CCSVI

Postby Cece » Sun Oct 09, 2011 7:33 am

An image published here http://www.ocregister.com/articles/pati ... l?graphics credited to Synergy Health Concepts

Image

The image is simple enough. CCSVI is simple enough. We haven't been discussing CCSVI itself much lately, perhaps we've all discussed it thoroughly? The "Before" image is not how these veins are supposed to work.
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Re: simple CCSVI

Postby HappyPoet » Sun Oct 09, 2011 9:14 am

Cece, this image is on the Synergy website: CCSVI infographic

EDIT #1: What Dr. Arata says on the image about the renal and iliac veins not being part of the equation doesn't seem right to me -- I'm glad mine were checked.

EDIT #2: Cece copied the graphic--that I couldn't properly copy--to a post below and addressed my comment. Thanks, Cece!
Last edited by HappyPoet on Mon Oct 10, 2011 3:33 pm, edited 2 times in total.
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Re: simple CCSVI

Postby David1949 » Sun Oct 09, 2011 8:30 pm

Cece the drawing in the upper right corner of your post shows a jugular valve which is inverted, pointing upward rather than downward. Their solution is to ballon the valve until it breaks. That keeps the valve from restricting flow out of the brain but it also destroys its ability to stop reverse flow. Now I know some folks don't have valves and they seem to get along ok. But in my opinion, God (or nature if you prefer) doesn't give us a lot of stuff we don't need. I'm betting that those valves serve a useful purpose. So the thing I've frequently wondered is if the valve could be inverted back to its normal position. I am not a Doctor but I am an engineer. The construction of the valve looks to me like it might be able to do that. I envision the valve being somewhat like the rubber thimbles that secretaries sometimes use so they can flip through pages of paper. Those thimbles can be easiy turned inside out. Then imagine the thimble with slits on the sides so the sides can separate and allow flow. That's how I see the valve.

This also causes me to wonder if a valve could start off being normal and then become inverted, perhaps by a pressure surge below the valve. A pressure surge might simply overpower the valve and turn it inside out just like the thimble. A pressure surge could come about from a blow to the chest. The shoulder harness of an automotive seatbelt crosses the area of the chest where it might also cause such a blow during a vehicle crash.
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Re: simple CCSVI

Postby drsclafani » Sun Oct 09, 2011 8:42 pm

Cece wrote:An image published here http://www.ocregister.com/articles/pati ... l?graphics credited to Synergy Health Concepts

Image

The image is simple enough. CCSVI is simple enough. We haven't been discussing CCSVI itself much lately, perhaps we've all discussed it thoroughly? The "Before" image is not how these veins are supposed to work.


Cece and David
While there are cases where the valve is upside down, this is not the common scenario or appearance. More commonly the valve leaflets are elongated and appear to be fused in a funnel shape, narrowing progressively as they go from top to bottom. Other abnormalities look nothing like this, including the hypoplastic segments, duplications, membranes, septum and occlusions.

The illustration is rather simplistic and it does not really reflect what is present.
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Synergy gets simple CCSVI wrong

Postby MarkW » Mon Oct 10, 2011 12:49 am

An informative post Cece - Synergy get simple CCSVI wrong is my understanding. Have they studied Prof Zamboni ?
I will use this thread as a warning to pwMS looking for treatment. My message is simple:
Go to an interventionlist who diagnoses using Venograms and Intravascular Ultrasound (IVUS), then no flying for 20 days.
Many pwMS are using their life savings to get diagnosis and treatment for CCSVI syndrome. I want to make sure they choose the best possible care as they cannot afford a second go.
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: simple CCSVI

Postby David1949 » Mon Oct 10, 2011 9:04 am

drsclafani wrote:Cece and David
While there are cases where the valve is upside down, this is not the common scenario or appearance. More commonly the valve leaflets are elongated and appear to be fused in a funnel shape, narrowing progressively as they go from top to bottom. Other abnormalities look nothing like this, including the hypoplastic segments, duplications, membranes, septum and occlusions.

The illustration is rather simplistic and it does not really reflect what is present.


Dr. S I didn't mean to imply that the inverted valve is the only case or even the most common case. But for some people it is the case. As you point out there seems to be a multitude of abnormalities that can be present. Maybe each one requires a unique fix.
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Re: simple CCSVI

Postby 1eye » Mon Oct 10, 2011 9:51 am

You might want to tell them not to point to arteries and call them veins. Valve inversion sounds like it could be a good explanation if CCSVI is traumatic rather than genetic, and perhaps partly explain genetic susceptibility and age-related progression. Too much adds up for it not to be in the equation somewhere.
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Re: simple CCSVI

Postby 1eye » Mon Oct 10, 2011 9:56 am

The illustration is rather simplistic and it does not really reflect what is present.
Yes it can be dangerous to over-simplify, and the artists are not surgeons. Quality control helps, but as someone said, don't shoot the messenger (or blame the doctors).
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Re: simple CCSVI

Postby 1eye » Mon Oct 10, 2011 10:14 am

David1949 wrote:Cece the drawing in the upper right corner of your post shows a jugular valve which is inverted, pointing upward rather than downward.

...a valve could start off being normal and then become inverted, perhaps by a pressure surge below the valve.


This sounds right to me: the art does have the valve upside-down, and should be fixed but it does a lot, if it is left in as a possible abnormal vein example, to explain how simple shapes can explain reflux, even when gravity and heart pressure are normally enough to drive the blood downward. The downward pressure is little more than gravity provides (even less when lying down), and the reflux might be little more than a splash. Over time, splashes add up.
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Re: simple CCSVI

Postby Cece » Mon Oct 10, 2011 12:07 pm

I didn't even catch the inverted valve. Although that could have been better drawn, it still conveyed the notion that the vein is blocked.

David, I can't quite picture a valve inverting like that, if it wasn't already that way from birth. Even if it did, once the flow normalized, there would be pressure pushing it forward back the right way. It's still an interesting thought. I have heard here at least one anecdotal report from someone who had been told she had inverted valves. One of the more interesting images I have seen was of a valve that was "sideways" (neither normal nor inverted but sideways on the vein).

HappyPoet, I'm giving your image a try, since you have it bigger now but blurry.
Image

I agree with what it says about the vertebral veins being too small to treat.
For both the renal vein and the "May Thurner location" aka iliac vein, it says, "No direct drainage of blood flow from the spine or brain occurs in this area." I would say it is correct that there is no direct drainage. The renal vein does not drain the brain nor the spine. The iliac vein does not drain the brain or the spine. No one is arguing that it does. The significance of the renal and iliac veins is that, when blocked, the flow that would normally have gone through these veins is instead diverted to a vein that DOES drain the brain or spine, which is to say, the azygous vein.

However I do think the graphic is very clear, and it is in keeping with what has been previously presented of Dr. Arata's ideas on CCSVI. When first learning about CCSVI, I didn't know where my azygous vein was. Nor did I know that in many cases the problem area would turn out to be at the base of the jugulars, at the bottom of the neck, a surprising distance from the brain itself.
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Re: simple CCSVI

Postby HappyPoet » Mon Oct 10, 2011 3:26 pm

Cece, thanks for fixing the graphic! I will never use a photo-hosting site again, lol.

Thank you, also, for clearing up for me the reason why DrS does venoplasty on those veins when indicated. One reason I tried to copy the graphic to my post is because of the three figures at the bottom of the graphic which appear in my blurry graphic but not in your clear graphic:

3 - Number of veins treated: Left jugular, right jugular, Azygos vein.
< 6 min. - Length of radiation exposure during the CCSVI procedure.
< 0.5% - CCSVI patients who have neurologic complications after treatment.
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Re: simple CCSVI

Postby 1eye » Mon Oct 10, 2011 3:31 pm

This bigger illustration seems to have the same problem. From the look of this art, it may be a common thing for people to think jugular veins look the same as leg veins, and don't realize blood reflux, and flow, are in opposite directions from what they are in leg veins. (That makes me think: the developing body is lying down: maybe a jugular is easier to develop wrong.) I would worry if I thought doctors make the same assumption. I think maybe some attempt to "blow through" an inverted valve could be tried before ballooning, but I'm no expert, and don't want to be.
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Re: simple CCSVI

Postby Cece » Mon Oct 10, 2011 5:15 pm

The azygous vein looks like it's correct.
I checked back on the website to see the extra information on the graphic that HappyPoet mentioned. I notice that Synergy is also claiming to be "The Leader in CCSVI."
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Re: simple CCSVI

Postby HappyPoet » Mon Oct 10, 2011 7:50 pm

I read somewhere that inverted IJV valves are very rare.

1eye, great post!

Cece, I saw that claim of Synergy's -- seems highly unethical to me because it's not possible to accurately measure who is "the leader." I wonder by what criteria they would say they base that claim on and how they got the supporting data... maybe they used the criteria, "How many procedures an IR can do in eight hours." Well, since Synergy does not use IVUS, they save at least 30 minutes per procedure. Also, not investigating the renal and iliac veins saves them even more time during each procedure. Did I miss anything else Synergy is not doing?
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Re: simple CCSVI

Postby 1eye » Tue Oct 11, 2011 5:37 am

I was wondering about that 6 minutes. I thought: "The procedure is an hour or more, isn't it?" Then I realized: this is the time the shutter is open on a camera, in comparison to a direct, continuous, focused beam exposure, which might be used to kill tissue, say, in a cancer operation. Since there is no way to protect the surrounding tissue in these cancer operations (unless you were to open up a patient and surround the tumour with a lead shield, in which case you might just as easily cut it out), the beam must be highly focused and not really directly comparable to a photographic exposure.

Probably the manufacturers' literature states it that way, and in cases like lung screening that might be reassuring. The fact is fluoroscopes and x-ray machines are designed not to harm tissue, and the exposure is small in comparison. It may be misleading to most people to even discuss it, so that's why units of radiation exposure are usually estimated equivalents, not just time: to keep them more accurate in terms of cell damage. I think Dr. Sclafani used the right unit when he discussed it.

Maybe doctors and attendants do not wear lead aprons in these procedures, since the risk is really cumulative over numbers of procedures and they would be too uncomfortable and restricting. Maybe only if they stand or have hands in the beam, is there any direct exposure. I'd rather be safe than sorry, and I don't think they are paid to be heroic. It may only be important to protect younger reproductive organs and babies. I just don't know any of these answers. If the doctor isn't worried, I'm too sick to care, personally, and whatever exposure there is, must be much greater on them than an individual patient, unless they are carefully shielded, because of the accumulation. I trust they will protect themselves. Even cancer patients recover from direct radiation on tumours, or we would not be doing it. "MS" kills, unless a bus or something gets you first. I know someone who was run over by a cab in a scooter.
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