Wheelchair Kamikaze-Revised Thoughts on CCSVI

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

Wheelchair Kamikaze-Revised Thoughts on CCSVI

Postby marcstck » Mon Jun 21, 2010 8:26 pm

Last week, I posted an article on my Wheelchair Kamikaze blog about my current thoughts on the state of CCSVI. That post elicited a large amount of intriguing responses, some of which have led me to revise my opinions regarding the importance of treatment studies.

Today, I put up a post detailing my revised thinking. Here's the link:

http://www.wheelchairkamikaze.com/2010/ ... state.html
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Postby JCB » Mon Jun 21, 2010 8:37 pm

Marc,

Another great post. Let's get to it.

Jim
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Postby HappyPoet » Mon Jun 21, 2010 8:44 pm

.
Excellent!
.
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Postby blossom » Mon Jun 21, 2010 9:30 pm

the wheelchair kamikaze out did himself again. just love your posts.
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Postby LR1234 » Tue Jun 22, 2010 3:47 am

Great post Marc!

I don't understand why a patient who has been liberated can't be rechecked by their neuro (without telling them they have had the procedure) and see if their EDSS score has changed or if any positive changes have happened.

In the UK and worldwide there must be thousands of patients documented in terms of physical ability, lesion load by their neuros.

If those patients have chosen to go privately and be treated for CCSVI can't it be set up that they are re-assessed? (even by their own neuro who does not know which of his patients have been treated)

Wouldn't this be like a trial a blinded before and after evaluation??

I wish someone would collate all the before and after reports from the unsuspecting neuros:)
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Postby Algis » Tue Jun 22, 2010 4:21 am

Just a wild thought here (again): wouldn't be that they are also scared of a 'mass' move request for exams that cannot be fulfilled?

If 200,000 MS'ers rush to ask for a thorough check up of their venous system; it might well create a huge jam in the waiting rooms...
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Postby Billmeik » Tue Jun 22, 2010 5:42 am

Third, if CCSVI does indeed prove to be a major piece of the MS puzzle, we need to refine the techniques and technology of the liberation procedure. Currently, many patients experience improvements soon after undergoing the procedure, only to see those improvements dissipate when their newly opened veins close up again. This phenomenon itself would suggest that CCSVI at least plays a role in the MS disease process, and also indicates that much learning needs to be done about the best practices, procedures, and equipment to be used when undertaking the liberation procedure. Virtually all of the medical equipment currently used in the treatment of CCSVI was developed primarily for use in arteries, which are vastly different in an anatomical sense to veins. Vein specific equipment, especially stents, needs to be developed if the liberation procedure does prove to be a major player in the treatment of Multiple Sclerosis.



ya nice
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Postby BooBear » Tue Jun 22, 2010 5:51 am

Great post, Marc! Spot on!
Three veins angioplastied.  One renewed life.  
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Postby ozarkcanoer » Tue Jun 22, 2010 8:24 am

Even thought I have participated (and paid) for an imaging study at BNAC and was found to have CCSVI, I completely agree with Marc that the treatment studies are the way to go. I have no where to go now that I have been found to have CCSVI. I don't want to go out of the USA and the treatment options are limited. I have tried to get treatment locally but because a stent would be required I am out of luck. So for me the testing at BNAC is sort of an anti-climax. I hope there are more publications soon from the few doctors who are treating CCSVI in MS patients.

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Postby JennP » Tue Jun 22, 2010 8:45 am

Algis wrote:Just a wild thought here (again): wouldn't be that they are also scared of a 'mass' move request for exams that cannot be fulfilled?

If 200,000 MS'ers rush to ask for a thorough check up of their venous system; it might well create a huge jam in the waiting rooms...


I think that if they approved the treatment now they wouldn't have a mass move for testing and treatment. I think there are quite a few out there who would want to take the wait and see approach (not me but...). If they wait until after all the studies are complete and all the results in to offer the treatment watch out! It will be a mad dash to the interventional radiologists or vascular surgeons!
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Postby joge » Tue Jun 22, 2010 10:47 am

Applause from The Netherlands !!

I posted your post on our (all Dutch) website: www.ccsvi.nl www.ccsvi.nl/forum

8)
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