Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Sun Apr 26, 2009 12:12 pm

why? it's one specialty out of many, not the top one and it takes longer to be a vascular doc. That's my point I'm sorry if it seems like anything else :oops: .

I am sure not a doctor!
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Postby Lyon » Sun Apr 26, 2009 12:25 pm

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Postby mrhodes40 » Sun Apr 26, 2009 12:53 pm

MS symptoms are neurological and historically it's only been sensible to take those symptoms to neurologists.

absolutely yes I agree. It could be argued that the vascular community should have taken this up in the '80's when Dr Schelling produced his work, but it is only recently that dopplers etc have evolved to the level they are today.

I also want to acknowledge that there has been an immense amount of research done by the neurological community into the causes of MS as they were understood at that phase in time. This is a new idea and new work. IT is just unfortunate that it is so 180 from where we have been with regards to MS causation becuase it poses all kinds of "political" issues. I am trying to be helpful by making the case that everyone haring off to the neurologist to see if this is something to look at is not going to be helpful but potentially harmful to the work overall. I'm gettng all grass roots here you see?

I had not seen that paper I feel it supports the work. What did you get from it?
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Postby peekaboo » Sun Apr 26, 2009 1:44 pm

wow i leave thisisms for 1/2 a day and all the talking going on...proves this is a HOT topic.

.ok glass 1/2 full...Greeed is good pharma top exec's are all about $$$ profits ets. mayve the little people working in the labs think that they are working for a cause. (most businesses are this way capitalism? ) dont' get me wrong I am not communist or socialist... CCVI is too simple an answer...I could have had a V8.....

glass 1/2 full...doesn't marc talk to a neurovascular guy? nice to know that there is such a segmented field. cure-o bust went to a cerbralvascular guy...I have been asking myself what we could do to help bring this information out from hiding. expose the works to fields of interst..to the public all inclusive..how can we market zamboni work and supporting docs public? (heay just use the msrhodes thread) we could write letters to various publications etc. is this a delusion of grandeur? this is news worthy...a unique approach to the mysteries of MS.

I am desparate...and
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Postby mrhodes40 » Sun Apr 26, 2009 2:33 pm

what we could do to help bring this information out from hiding


It is not a therapy yet. It is research in works so I am not sure it is hiding.

My effort consisted of writing it all up and asking for permission to come get checked, then paying for dopplers out of pocket (you're all welcome :wink: ) so that my local professor of vascular surgery could get a chance to see if this showed up on me with the hopes if it did he might do a study or wrote me up as a case study.

He's still thinking what to do next.
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Postby Lyon » Sun Apr 26, 2009 2:46 pm

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Postby peekaboo » Sun Apr 26, 2009 2:49 pm

Bad choice of words..instead of hiding let me say to bring about greater awareness of zamboni's work. especially if neuros the ones we go to as speicalist in ms... don't/wont have a clue and vascular guys don't think of ms so why would they particularly know about this? its a catch 22 ....
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Postby mrhodes40 » Sun Apr 26, 2009 5:23 pm

Ok Bob, Thnks fr thinking of it! I appreciate it very much! :D
It is in with the stuff we were talking somewhere back 15 pages or more ago with the decreased perfusion in the MS brain.

They demonstrated lower levels of deoxyhemoglobin which means the brain was not being able to remove as much 02 as it should from the hemoglobin as it goes by in the circulation, but overall they showed that deoxyhemoglobin can be used as a contrast agent with MRI in the technique. Generally it is thought that the inflammation of the vessels slows the perfusion down but this ccsvi model has more of a "backup" angle to it instead to acount for that

It might be possible to show that something like the "Liberation 100" were using oxygen better after treatment? I wonder. So do the liberation proceudre then do these scan studies to see if it made a difference in 02 utilisation. tht might show a difference much more rapidly than some other checks a person might do, like waiting to see if lesions got smaller. That might take years or never happen, but maybe the oxygen utilisation would change more quickly than that.

The name of the paper is
Ge, Y et al "Diminished Visibility of Cerebral Venous Vasculature in Multiple Sclerosis by Susceptibility Weighted Imaging at 3.0 tesla". Journal of magnetic resonance imaging 29:1190-1194 (2009)

Yes PKboo It's a weird situation. Your hand must be wonky like mine! Heya sista!

But even though we go to neuro's there is no good reason for them to be aware of it yet because there is no treatment yet. Like they could refer us to get dopplers but if they did the doppler guy and the neuro would then be stuck what do they do with this iformation? There's no approved treatment yet.

There MIGHT be a way for an aggressive patient to work around that--let's say Cheer--who got a doctor who already agrees that he will treat, --AHEM! -- vasculr headaches. I am pressing my guy to do something but so far he is still cogitating, and I actually think that's what most people would get if they tried to get someone to do dopplers.

So making doctors more aware is not going to help us YET!

But one year from now Dr Zamboni will release the results of the Liberation procedure. if it works well this conversation will be different because with 100 patients (even insurance covered revimmune has fewer than that many documented treated patients) so the size of that study works greatly in our favor. Additionally it will be proven to everyone that all of those patients HAD a stenosis...because they did surgery on these said stenoses. So all of a sudden the end of questions about "do MS patients have stenoses" the answer to that will be yes, at least some of them do, and then we can individually make the case that we want dopplers and venograms.

my dopplers BTW were only $505. About the same cost as ONE WEEK of copaxone.
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Postby Lyon » Sun Apr 26, 2009 5:33 pm

..
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Postby mrhodes40 » Sun Apr 26, 2009 5:53 pm

I did not summarize the paper well Bob that is the quickie un helpful version. :oops: You'd be able to read it I just summarized it--badly-- so you could see if you want to read it yourself.

The idea for the study is that they can use the deoxyhemoglobin that is already in the blood naturally as a sort of an intrinsic contrast agent with this special technique. It makes it possible to see deoxygenated blood more clearly than oxygenated-------------ergo the veins show up more plainly than the arteries. But in MS patients it was not showing up at all well, demonstrating that we are NOT using the oxygen as well as we should, the "signature" of the veins looked more like arteries...like there was more oxygen in there than there should be.

I hope that's better..........
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Postby Lyon » Sun Apr 26, 2009 6:01 pm

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Postby mrhodes40 » Sun Apr 26, 2009 6:12 pm

Well OK but we'll party on together every one of us. :D

I do want to add that "WE" didn't discover anything, Dr Zamboni did. Dr Simka has thrown in with the idea. Thank God for them, we're really just groupies!! :lol: :lol:
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Postby Lyon » Sun Apr 26, 2009 6:26 pm

..
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hot

Postby wobbly » Mon Apr 27, 2009 11:47 am

it is 82 right now/ doing some yard work- went 2 work out earlier/ the liberation has helped tremendous/ just wanted u guys 2 no / this is the real deal/ STAY STRONG ALL :) :) :) :)
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Postby peekaboo » Mon Apr 27, 2009 12:07 pm

WOW wobbly

Please give us the details...who what where when & how?
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