80% it's true revisited

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

Postby Billmeik » Mon May 10, 2010 6:57 am

Dont mind about these numbers. Just try to have a plebography done.



but it's important that people talk about buffalo as 80%. Like that guy in georgetown who says 'only half of ms patients have ccsvi' as if it's the accepted truth.

The accepted truth is 80%

100 zamboni
95 simka
80 buffalo

etc.
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Postby costumenastional » Mon May 10, 2010 7:10 am

the way i see it it s 99% but then again, who am i to tell?
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Postby sbr487 » Mon May 10, 2010 7:16 am

Billmeik wrote:
Dont mind about these numbers. Just try to have a plebography done.



but it's important that people talk about buffalo as 80%. Like that guy in georgetown who says 'only half of ms patients have ccsvi' as if it's the accepted truth.

The accepted truth is 80%

100 zamboni
95 simka
80 buffalo

etc.


The irony is that the guys who were laughing when Buffalo study was going on are conveniently using these to their advantage ...
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Postby scorpion » Mon May 10, 2010 7:41 am

I admit I am poor with numbers so please help me figure this out. There were 289 people tested for CCSVI right? If I am correct 162 had CCSVI and 97 did not while 30 people were questionable. IF you throw the borderline group out you have about 60% of people being definite for CCSVI, right? So 6 out of 10 people with MS were DEFINITLY shown to have CCSVI. Once again my arguement is that IF CCSVI were the cause of MS, the number should have been around 95%. The study shows me one of two things. 1. Although it seems unlikely, the investagators did not use the most precise form of measuring CCSVI, a plebography(?). Prior to the Buffalo results being released it seemed everyone was satisfied with the doppler but now it seems that the only true way to test fot CCSVI is a plebography. 2. CCSVI is caused by damage from MS, which is an immune disorder. Than the question becomes what benefit, if any, comes from having your veins opened up?
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Postby Sotiris » Mon May 10, 2010 7:45 am

Acc. to BNAC results, 80% holds only for secondary progressive patients and not for all pwMS. However, we do not need to put so much credit to these numbers, since the diagnostic procedure was not so good as the one of Zamboni.
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Postby Rokkit » Mon May 10, 2010 8:17 am

Sotiris wrote:Acc. to BNAC results, 80% holds only for secondary progressive patients and not for all pwMS. However, we do not need to put so much credit to these numbers, since the diagnostic procedure was not so good as the one of Zamboni.

I've been wondering if this is why the BNAC study hasn't been published yet.
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Postby Trish317 » Mon May 10, 2010 8:27 am

Eighty percent is a HUGE number. Any rationally thinking person would translate that to 100% of MS patients needing testing.
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Postby frodo » Mon May 10, 2010 9:51 am

scorpion wrote:I admit I am poor with numbers so please help me figure this out. There were 289 people tested for CCSVI right? If I am correct 162 had CCSVI and 97 did not while 30 people were questionable. IF you throw the borderline group out you have about 60% of people being definite for CCSVI, right? So 6 out of 10 people with MS were DEFINITLY shown to have CCSVI. Once again my arguement is that IF CCSVI were the cause of MS, the number should have been around 95%. The study shows me one of two things. 1. Although it seems unlikely, the investagators did not use the most precise form of measuring CCSVI, a plebography(?). Prior to the Buffalo results being released it seemed everyone was satisfied with the doppler but now it seems that the only true way to test fot CCSVI is a plebography. 2. CCSVI is caused by damage from MS, which is an immune disorder. Than the question becomes what benefit, if any, comes from having your veins opened up?

Even if you were right and CCSVI is a product of some kind of autoimmunity, you should't have a reflux back in your brain. Nobody knows for sure which effect such a reflux will produce, but it is not the way blood should flow. Not knowing the effects of such a condition, I would try to fix it as soon as possible. The only thing we know for sure that has no adverse consequences is normal blood flow.
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Postby sbr487 » Mon May 10, 2010 10:07 am

scorpion wrote:2. CCSVI is caused by damage from MS, which is an immune disorder. Than the question becomes what benefit, if any, comes from having your veins opened up?


Open up the veins and measure the lesion changes. If the lesions remain the same or reduce (in size or number), its good enough. Common sense says that restenosis cases should not seen as failures of CCSVI but method of treating it. The question now remains, how would we see its effectiveness if certain % do not benefit from it, which I think will be the case. I think this is nothing new in medicine.

Opening up veins has to become the primary method of treating MS cases. Its not for doctors (especially the neuros) to decide, its for them to inform, objectively. Its for patients to decide ...
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Postby Billmeik » Mon May 10, 2010 10:12 am

o 6 out of 10 people with MS were DEFINITLY shown to have CCSVI



Only if you include clinically isolated syndrome as part of your definition of people with ms.

If you leave them out it's 80%. That should be the standard number used.


I am however, fascinated by the other model where ms causes ccsvi. If all ccsvi is is a build up of scar tissue beind washed down the blood stream from the brain, is there a model to show that scar cells from the brain could become scar cells in veins?

If this model was fleshed out and proven ther would be a legititmate scholarly debate and not just hysterical noise from neuros.
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Postby Sotiris » Mon May 10, 2010 10:59 am

Billmeik wrote:Only if you include clinically isolated syndrome as part of your definition of people with ms.

If you leave them out it's 80%. That should be the standard number used.
[...]
The official BNAC statistical data are as follows:
Image
Note1: 1 person was not eligible for statistical analysis.
Note2: All categories in blue were considered MS.
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Postby Billmeik » Mon May 10, 2010 2:11 pm

huh so zamboni is wrong. huh.

their definition of ms doesn't include cis.


bummer.
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Postby Johnson » Mon May 10, 2010 2:20 pm

costumenastional wrote:...

shit... how come everybody feels better xcept me... :(


Hey Costume National, kind of missed your procedure - it happened very suddenly, I think. I am very sorry that you are not feeling better. Is it perhaps due to your EDSS? I read repeatedly that Simka admonishes people to give it three months, so hopefully, something will switch for you soon. We are still here, and still with you. I know that doesn't make you feel any better physically though.

Hang in there.
My name is not really Johnson. MSed up since 1993
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Postby Billmeik » Mon May 10, 2010 2:41 pm

but as to the assertion that ms causes ccsvi hmmmmm.
Putnam would totally disprove that if it was true. If putnam is replicated.
cause and effect would be proven.

Still

progression wouldnt be explained. Progression happens. It kind of fits with a model of scar tissue build up over time...


Juries still out.

There are precedents where fixing ccsvi would still help.
A blocked exhaust on a car makes the engine stop. Fixing is allow the engine to run again.

Lets say none of the finding hypoxic damage and iron is true. What's going on is autoimmune. In a world where there was no feedback at all coming up the pipe and local pressure was exactly the same,there would still be slight engine strain. Getting worse until the exhaust is totally blocked and the engine stops. Resistance.
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Postby costumenastional » Mon May 10, 2010 10:44 pm

Johnson wrote:
costumenastional wrote:...

shit... how come everybody feels better xcept me... :(


Hey Costume National, kind of missed your procedure - it happened very suddenly, I think. I am very sorry that you are not feeling better. Is it perhaps due to your EDSS? I read repeatedly that Simka admonishes people to give it three months, so hopefully, something will switch for you soon. We are still here, and still with you. I know that doesn't make you feel any better physically though.

Hang in there.


Thanks friend, i know... and i am still here, with you.
My edss is 2. Well, actually in Greece i was 0,5 due to my left eye optic neuritis but in Sofia they told me i am a 2 cause i have scotoma in that eye, whatever that is. Then again, is there really a neuro to tell me how i feel?

I can function very good actually. But appart from numbness in my hands, tinitus and eye problems my most severe issue is my cog fog, dizzyness, lack of energy and lack of alertness feeling you know? My balance is not perfect either. Anyway, there is no change in there. And it is frustrating cause i could use a bit more energy.

To be honest my left eyelead does not drop anymore like it used to 3 weeks pre op and my wrists feel normal. I had this weak wrists feeling pre op which made me think i am loosing my hands. I think it s gone.
Can i say that these are happening because of the procedure? Who knows? I really need for something more drastic to take place to tell you all that it is working for me.

There is no doubt in my mind that CCSVI causes Multiple Sclerosis. I ve seen too much not to believe so.

The problem in my case might be that it took me 7 years of vein malfunction working slowly and silently to get me where i am. Maybe it ll take more that a week for my poisoned brain to come around. I ll try to make sure that my veins remain open, i ll stay away of bullshit drugs and i ll be around to tell you how it goes.
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