New Blog Post-CCSVI: Separating Fact from Fiction

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

Postby whyRwehere » Tue Dec 01, 2009 11:09 pm

I think you misunderstood Marie. She is not complaining that healing is coming too slowly. She only said, that people at the beginning of the disease should wait until the procedures are refined, where people like her who are more advanced have nothing to lose.
Anyhow, could you ever shorten your posts...I can't read them all the way through.
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Postby MS_mama » Wed Dec 02, 2009 8:41 am

marcstck wrote:
Actually, statistically speaking, there are enough subjects in the Zamboni studies to make a 100% contention questionable. The figure thrown about regarding MS misdiagnosis is 5% to 10%, and that's using the McDonald criteria. That would be enough to throw off Zamboni's numbers.


I guess it depends who you talk to--one MS researcher described the likelihood of a typical MRI with lesions as being MS 99% of the time. Or as my neurologist said, "If we hear hoof beats, it's probably not a zebra." I think as they come up with more and more defining characteristics of the disease (e.g. the nature of lesion locations, b-cell involvement, gray matter atrophy) plus MRIs, MS as a disease is becoming more and more defined as a distinct disease vs. just a "diagnosis of exclusion" only. At least this is what the doctors I have talked to have portrayed it as. I realize that doctors frequently disagree though. 8)
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby MamaGirl » Wed Dec 02, 2009 10:50 am

mrhodes40 wrote:May I say that I believe that if your MS is not progressing in such a way that you are losing the battle, you should really step back.

And I do not mean you are afraid of MS progression, we all are afraid of it, I mean you are really losing the battle and you are getting to the point that assistive devices are needed and nothing else is available or helping.

It takes some real bravery and honesty to take a hard look at your situation and admit that on the whole you are really OK on a day to day basis when you know that you have MS, but many MSers give in to the terror and are blind to today and the fact they can still walk and whatever. They catastrophize every little tingle and twinge--I was like that BIG TIME. I thought every ticklish foot was a relapse. 6 YEARS went by before I realized I was doing fine. I missed a lot wandering around in a high state of terror :cry:

This type of person will jump at this surgery eyes closed and should not do so...they are not making the best judgment.

I envy you who can wait so very, very much, the optimal surgery is some years away.

That having been said, my stents are in and I had complications including nerve damage BUT MY SPASMS ARE GONE. I am a lot better I'd say simply for that.

It is a worthwhile trade to me. I am grateful that people with no options or useless options with dangerous side effect (ie novantrone or tysabri for the person who has no inflammation) have something to try at this point and such a person's risk vs reward analysis it totally different than a person who is essentially still very functional.

All that having been said we ALL need to press for treatment to go forward for everyone early enough they can preserve the most possible function.
BRAVO, BRAVO, BRAVO!!! You have stated such an important issue... how are you functioning with your MS TODAY??? The risks involved will always be measured in "if its worth the risk" and in myself, I can say "not yet". I can say, it is okay to wait a little longer for this to become more perfected...not perfect perhaps, but more perfected. I am suffering alot with symptoms but I can still walk even if assistance with a cane is sometimes needed. "But I most certainly take my hat off to all the "pioneers" and am so so happy that there is a hope now, a light, not just for those who are more disabled but for those nonetheless struggling with MS and venous symptoms. What an incredible era we are living in.. perhaps this is the era that will stop MS from touching any more of our family members!!!
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Postby bibliotekaren » Wed Dec 02, 2009 1:02 pm

CureIous wrote:
zap wrote:My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.

Zactly.

I'll just bite my tongue on the rest of what I wanted to say.

Yep, bed-ridden doesn't trump brain-ridden.

Marc, as always, a thoughtful post.
Last edited by bibliotekaren on Wed Dec 02, 2009 2:48 pm, edited 1 time in total.
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Postby mrhodes40 » Wed Dec 02, 2009 1:09 pm

I think you misunderstood Marie. She is not complaining that healing is coming too slowly. She only said, that people at the beginning of the disease should wait until the procedures are refined, where people like her who are more advanced have nothing to lose.
Anyhow, could you ever shorten your posts...I can't read them all the way through.


That is all I meant. Radeck's ending up with open heart surgery is not what anyone wants for a person..

It is also true that the best approach is not known yet. Dr Dake uses stents and has no dopplers such as those used by Zamboni or Simka. Dr Zamboni uses stents only very rarely and in his new paper details that some types of stenoses were repaired with 100% success-no restenosis at all in 18 months. Obviously having no foreign object in your vein if it is not needed is the better choice--if you can get it.

Since this is new and still being developed these details are being worked out as it goes. People only can know what they know at any given point in time.

This week, I know that Rad had a terrible complication, I didn't know that before.

This week, I know that Dr Zamboni had some certain types of stenosis that NEVER needed a second repair and did not need a stent. All I knew before was that stents could be placed to keep the vein open.

We have to accept the dynamic nature of this at this point, and that individual players in this, including the researchers and information shared on this site, are still in a state of learning. No matter how badly we want it now, the only thing available now is the best someone can do, and that may not be "right".

One point Rad made repeatedly is that Zamboni gets result with balloons when Dr Dake does not see anything balloon-able. Dr Dake uses venogram in surgery just like Zamboni, is there something he misses? I do not know, but more importantly and to the point Dr Dake doesn't know exactly why it is that way either. He does look to try to see what Zamboni sees (ie many azygos issues), but until this conundrum is resolved we do not know if treatment will work the way it does in Italy when it is done in California. OR maybe it will work just as well, I don't know.

With regards to my comment on newly diagnosed people, they will be the ones who can benefit most when it is a safe and certain procedure, but they have the most to lose now perhaps. It was just a thought to encourage newbies to take a little pause...now that we know what we know at this point in time.
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 radeck » Wed Dec 02, 2009 3:11 pm

Marie, all relevant information from the new Zamboni paper were known to everybody since the Bologna conference in early Sep, and we got the detailed numbers when the abstract of the paper appeared in threads on this forum several weeks ago. The 53% patency of jugular veins and 97% patency of azygos veins in Zamboni's patients versus 0% for both in Dake were known to us and all the researchers involved for some time.

Concerning the new data point of what happened to me, it could either be that the chance of this happening is acceptably low, say 1/Million, in which case the fact that it happened in the first 50 patients is surprising, or that the risk is as high as 1/50, meaning intuition in foreseeing it was lacking.
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Postby mrhodes40 » Wed Dec 02, 2009 4:06 pm

The 53% patency of jugular veins and 97% patency of azygos veins in Zamboni's patients versus 0% for both in Dake were known to us and all the researchers involved for some time.


You misread. These patency numbers are how often the vein stayed open AFTER liberation treatment not how often he saw these abnormalities. And Dr Dake has found several people with azygos problems not "0%". Holly had an azygos repair I remember for certain.

From the Dec '08 paper , how often he saw the abnormalities:

In particular, the azygous vein in the MS group was affected in 86% of cases.
Most cases involved membranous obstruction of the junction with the superior
vena cava, twisting, or, less frequently, septum and atresia as can be seen in
the x-rays in Figure 2a; in 12 cases the azygous system presented stenoses
at several points up to even atresia of the lumbar plexuses (18%) (Fig. 2c).
As for the jugular veins, they were found to be stenosed unilaterally or
bilaterally in 59/65 patients (91%). The stenoses were frequently annulus and
septum, followed by atresia; no twisting was observed (Fig. 2b).


These are the same people who got liberation.
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 radeck » Wed Dec 02, 2009 4:46 pm

Marie, you misread my post, so your response is out of context. Dake has little success treating what he calls stenosis with balloon dilation, in that the treated areas recollapse immediately. The problems Zamboni treats on the other hand stay open for a while: 18 months in half of his patients in case of the jugular veins, and in almost all of his patients in the azygous vein. The Zamboni numbers have been known for months.
Last edited by radeck on Sat Jan 16, 2010 6:07 pm, edited 1 time in total.
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Postby Johnson » Wed Dec 02, 2009 7:34 pm

radeck wrote:Marie, you misread my post, so your response is out of context. Dake has 0% patency in treating jugular and azygos veins with balloon dilation. They recollapse on the operating table while Zamboni's stay open for 18 months in the majority of his patients. And this
has been well known for months.


This is very interesting, and leads me to wonder about the population of the US in comparison with that of Italy vis-a-vis vascular health in general. It is well known (at least to me), that Southern Europeans enjoy better cardiovascular health than Americans do - largely because of diet and lifestyle differences. Could it be that Italians have healthier veins, and that is why they experienced a greater patency? The differences seems too absolute, and dramatic, though. Perhaps it is a combination of that and medical cultural differences. Perhaps it is more ephemeral than that, even.
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Postby mrhodes40 » Wed Dec 02, 2009 7:53 pm

I'm sorry Rad :oops:

You are absolutely right on that.
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 radeck » Wed Dec 02, 2009 8:20 pm

Johnson, I have a theory for the difference, it's definitely not demography, and one of the researchers I've spoken to has found evidence for it, but it may be a bit premature to mention.
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Postby MS_mama » Wed Dec 02, 2009 9:31 pm

radeck wrote:Johnson, I have a theory for the difference, it's definitely not demography, and one of the researchers I've spoken to has found evidence for it, but it may be a bit premature to mention.


you're gonna leave us hanging? :wink:
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby whyRwehere » Thu Dec 03, 2009 1:58 am

yah, radeck, inquiring minds want to know.
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Postby LR1234 » Thu Dec 03, 2009 2:47 am

Did Zamboni only attempt to treat people that knew could be fixed by ballooning? So basically all the high up stenosis patients were not included in the study??? Dr D is treating everyone.

So maybe it has nothing to do with patency but location??
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Postby swibe » Thu Dec 03, 2009 6:00 am

venous insufficiency is more common among women (think varicose veins), so this could explain the gender difference in MS and make the CCSVI association/cause of MS consistent.
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