New Wheelchair Kamikaze Post on the Current State of CCSVI

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

Postby MrSuccess » Tue Jun 15, 2010 10:29 pm

Marc - I am very pleased to read that you are being so well looked after by all those top medical doctors. They must be amazing to be around.

I have tried my best to read all the information you have provided here at TIMS and your blog. I say tried my best as you are a bit ''wordy'' and that challenges me . :wink: There is a fair-good chance I might skip over some useful information you provide ..... :roll:

There is no doubt you are one of the better posts to read here at TIMS.

But that said ..... I do not agree with some of your opinions.

I do not agree with you ... that some people with blocked veins are healthy. I won't repeat myself on that subject here .....you can read my concerns about this on my other posts.

One other thing ..... we all are more-or-less cut out like cookies .... with our anatomy being .... more-or-less .... all the same.

When something differs ...... such as CCSVI ..... it's time to correct the difference before problems arise .....such as MS. :idea: :idea: :idea:





...put your head on my chest ...'cause I'm ...




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Postby Billmeik » Tue Jun 15, 2010 10:32 pm

btw the standard anecdote on how many healthy people have lesions is 5%.
Since ms is .01% that means that 98% of people with lesions DONt have ms. This number is higher in a population over 50 years old.

So why is buffalo's control goup for ccsvi 25%. Hmm well 5% could be these benign msers, family members push it up, but like a lot of their numbers dunno.

In poland the ultrasound and mri didnt show much onme, but the venography showed a lot. Its all about venography to me these days..

course that might make the control number even higher...
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Postby marcstck » Wed Jun 16, 2010 12:32 am

cheerleader wrote:When someone is diagnosed with liver disease, the veins are checked. If the hepatic vein is blocked, and there are signs of collaterals and inefficient drainage, the diagnosis is Budd Chiari. In organ failure, the venous system is routinely checked. Blood flow is considered an important assessment.

Hearing Dr. BB Lee in Bologna was a mind-opening experience. Here stood an eminent researcher and physician stating that we had no idea how slowed extracranial venous drainage of the brain affected gray matter. There were simply no studies. And this astounded him. But if we looked to Budd-Chiari, we could see how a lifetime of slowed perfusion could damage the organ beyond repair. And there are no brain transplants.

Marc, I'm sure there are people with blocked hepatic veins whose collaterals are just fine, and they go to their graves with mildly impaired livers. I'm sure there are migrainers who have some venous issues and may show a bright spot on MRI...but this does not mean that venous drainage impairment can be tolerated by everyone . I'm sure the doctors can remove jugular veins in cancer patients, and they can show you another person who has the exact same blockage as you, Marc. But they are not you.

There may very well be some crazy, Rube Goldbergesque process in MS...venous stenosis + EBV infection + blood pressure changes + insufficient vitamin D + a bit of bad luck/genes and you get MS. Who knows? But the fact that venous anomalies are showing up in MS patients and confounding vascular doctors and IRs should give us pause. And if patients want to have their veins opened, they should be allowed to be seen and treated by vascular doctors, just as Budd Chiari patients are. Because the brain is damaged and the veins draining that organ are not working properly.

And I don't see your essay as anything more than your usual thought-provoking and articulate writing, Marc.
cheer


cheer, I think we're in agreement on just about everything regarding CCSVI. You may be a less skeptical than I, but it's not as if I'm a doubter. It's really just a matter of degree.

I too believe that patients should be able to address any venous abnormalities found within them. Unfortunately, in order to do that, most now have to fly out of the country to visit physicians in far off lands. That presents problems if they suffer restenosis or some other problem at some point after their procedure. I know you have said that Jeff has had to have at least one "tuneup", and if that tuneup required flying all the way back to Poland or Bulgaria, it wouldn't be such an easy proposition. Even without episodes of restenosis, follow-up care is vital, and I hope that all patients seeking treatment in far from home understand this.

As I stated in my essay, the experience of the doctor doing the procedure is also of critical importance. This isn't a procedure that doctors become instantly proficient at.

Thanks for the comments about my writing, and kudos to you for continuing to lead the charge...
Last edited by marcstck on Wed Jun 16, 2010 12:48 am, edited 1 time in total.
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Postby marcstck » Wed Jun 16, 2010 12:40 am

MrSuccess wrote:Marc - I am very pleased to read that you are being so well looked after by all those top medical doctors. They must be amazing to be around.

I have tried my best to read all the information you have provided here at TIMS and your blog. I say tried my best as you are a bit ''wordy'' and that challenges me . :wink: There is a fair-good chance I might skip over some useful information you provide ..... :roll:

There is no doubt you are one of the better posts to read here at TIMS.

But that said ..... I do not agree with some of your opinions.

I do not agree with you ... that some people with blocked veins are healthy. I won't repeat myself on that subject here .....you can read my concerns about this on my other posts.

One other thing ..... we all are more-or-less cut out like cookies .... with our anatomy being .... more-or-less .... all the same.

When something differs ...... such as CCSVI ..... it's time to correct the difference before problems arise .....such as MS. :idea: :idea: :idea:





...put your head on my chest ...'cause I'm ...




Mr. Success


Success, I have been fortunate to be treated by some of the best in the business, but believe me, I wish their attentions weren't necessary. The fact that the NIH has taken a prolonged interest in my case is wonderful, but also terrible. I'm sure you can understand what I mean.

I'll certainly cop to the charge of being "wordy". I think that's partially due to the fact that I use voice recognition software to "write", since I barely have use of my right arm and hand, and it's easy to get wordy when simply speaking into the computer records all of your utterances.

I am happy that you don't agree with some of my opinions, as a healthy give and take can often lead to opinions evolving, or even (gasp) changing.

I'd never ask or expect for everybody to agree, but we should all be civil with each other. Although this is a virtual community, the folks populating it are real people.
Last edited by marcstck on Wed Jun 16, 2010 11:18 am, edited 1 time in total.
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Postby marcstck » Wed Jun 16, 2010 12:44 am

Billmeik wrote:btw the standard anecdote on how many healthy people have lesions is 5%.
Since ms is .01% that means that 98% of people with lesions DONt have ms. This number is higher in a population over 50 years old.

So why is buffalo's control goup for ccsvi 25%. Hmm well 5% could be these benign msers, family members push it up, but like a lot of their numbers dunno.

In poland the ultrasound and mri didnt show much onme, but the venography showed a lot. Its all about venography to me these days..

course that might make the control number even higher...


bill, I hope you're doing well in Poland. When are you scheduled to return?

After examining the buffalo numbers, I agree with you that there's something wonky going on with them. Dr. Z. has pretty much come out and said that their imaging techniques do need refinement. BTW, did you know that Dr. Z. is a neurologist? I just learned that the other day, I assumed wrongly that he was a vascular specialist.

I also agree that catheter venogram is the only truly reliable method of judging the state of the CNS venous system, at least for now. Lots of patients are reporting that their noninvasive imaging results are dramatically different than the results seen when the catheter makes its way through their veins...
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Postby MrSuccess » Wed Jun 16, 2010 8:26 am

Marc - we all learn from one another. Dr. Zivadov's research partner Dr. G-W , in Buffalo .... is also a well respected Neurologist . Correct me if my information is wrong.

That may possibly be the reason why their study did not / could not involve going inside the vascular system to confirm or refute the theory proposed by Dr. Zamboni . That and funding.

When researchers are allowed to use all of Dr. Zamboni's investigative procedures .... Dr. Zamboni's numbers and findings ring true.

How is it possible to confirm or deny the Zamboni research otherwise ?

The list of those who have actually gone inside the vascular system to explore and repair CCSVI is small but growing.

It is these wonderous people we should look to and value their research numbers and reports. I include both Drs. Z & G-W in Buffalo.






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Postby fernando » Wed Jun 16, 2010 10:58 am

Thank Marc for your take on this.

Maybe I'm absolutely wrong, but knowing that the Zamboni testing is difficult to learn (as Dr. Sclafani said) and despite being trained by Dr. Z (or his team )could it be possible that Buffalo's results are skewed(at least in part) because operator's skill?

What was really investigated? ccsvi prevalence or how much skilled an echo doppler technician should be?
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Postby MS_mama » Wed Jun 16, 2010 11:27 am

marcstck wrote: Even without episodes of restenosis, follow-up care is vital, and I hope that all patients seeking treatment in far from home understand this.


as I have now learned, a lot of vascular doctors/IRs won't touch you if you have an off-label procedure such as CCSVI done. If something goes wrong while you are in their care, they don't want to deal with it. I just talked to a cardiologist who is working on finding some local follow-up dr's for me and she said it would be challenging finding one to take on a pt who had this type of procedure done.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby magoo » Wed Jun 16, 2010 12:29 pm

fernando wrote:Maybe I'm absolutely wrong, but knowing that the Zamboni testing is difficult to learn (as Dr. Sclafani said) and despite being trained by Dr. Z (or his team )could it be possible that Buffalo's results are skewed(at least in part) because operator's skill?

What was really investigated? ccsvi prevalence or how much skilled an echo doppler technician should be?


I love this, so true!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Mandatory Kuhn's quote

Postby fernando » Wed Jun 16, 2010 12:44 pm

Sorry to reiterate, but I think it is appropriate.

When enough significant anomalies have accrued against a current paradigm, the scientific discipline is thrown into a state of crisis, according to Kuhn. During this crisis, new ideas, perhaps ones previously discarded, are tried. Eventually a new paradigm is formed, which gains its own new followers, and an intellectual "battle" takes place between the followers of the new paradigm and the hold-outs of the old paradigm. Again, for early 20th century physics, the transition between the Maxwellian electromagnetic worldview and the Einsteinian Relativistic worldview was neither instantaneous nor calm, and instead involved a protracted set of "attacks," both with empirical data as well as rhetorical or philosophical arguments, by both sides, with the Einsteinian theory winning out in the long-run. Again, the weighing of evidence and importance of new data was fit through the human sieve: some scientists found the simplicity of Einstein's equations to be most compelling, while some found them more complicated than the notion of Maxwell's aether which they banished. Some found Eddington's photographs of light bending around the sun to be compelling, some questioned their accuracy and meaning. Sometimes the convincing force is just time itself and the human toll it takes, Kuhn said, using a quote from Max Planck: "a new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."


http://en.wikipedia.org/wiki/Paradigm_shift
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Postby concerned » Wed Jun 16, 2010 3:28 pm

Exactly why people shouldn't complain about people attacking CCSVI. If it makes any sense, it should survive... that's science.
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Postby fernando » Wed Jun 16, 2010 3:33 pm

Concerned,

Are you saying that we all have to wait the opposing neuros to die? :lol:
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Postby Cece » Wed Jun 16, 2010 3:40 pm

I actually agree with concerned...in science things need to be duplicable. I do not want politics getting in the way of the science, however, and I think we've seen some of that.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby fernando » Wed Jun 16, 2010 3:55 pm

Cece,

From my point of view, Science, as every human endeavor, is... well, human, with its flaws and virtues. Politics has everything to do with Science at least with human Science. Whenever I think otherwise I re-read the quote from Max Planck:

“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it”
Max Planck quotes (German theoretical Physicist who originated quantum theory, 1858-1947)
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Postby concerned » Wed Jun 16, 2010 4:10 pm

fernando wrote:Concerned,

Are you saying that we all have to wait the opposing neuros to die? :lol:


Either them, or the internet cult of the humble plumber, one of the two!!! 8) 8) 8)
(I don't really think there's a fight between neurologists and vascular surgeons and their fans. that was just a joke.)



(actually i meant that is the way we humans approach science, it's normal and it has it's advantages.)
Last edited by concerned on Thu Jun 17, 2010 8:36 am, edited 1 time in total.
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