Other options

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

Other options

Postby NHE » Sun Jun 07, 2009 9:13 pm

I'm curious what other options there are to stent insertion. In effect, we know that Dr. Michael Dake at Stanford is inserting stents to correct the CCSVI stenoses. We also know that Dr. Zamboni is using a different surgical procedure that does not require stents. However, do we know exactly what Dr. Zamboni is doing surgically? Is it a one time fix? Does it require continual use of blood thinners, e.g., Plavix, comparable to the stent insertion procedure?

Thanks, NHE
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Postby Arcee » Mon Jun 08, 2009 4:47 am

NHE, really good question. I asked a similar one awhile back, talking about there being a continuum from stents to Zamboni's cleaning/smoothing (sorry, but every time I mention his name, friends and family feel compelled to make an ice smoothing reference) to basic endothelial health promotion. I think it will be really interesting if one of us sees Dr. Dake and there is something going on, but perhaps not something that is worthy of a stent.
So I don't have anything really to offer to address your question, but it is one that I think about a lot.
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Postby CureOrBust » Mon Jun 08, 2009 4:55 am

I don't know if it has been published in any form, however I would guess the following presentation would elucidate the actual technique.
http://www.uip2009.eu/UIPFinal.pdf Pg 12
09.45-11.00
Prince Pierre Chronic Cerebro - Spinal Venous Insufficiency (CCSVI)
Chairperson: P. Zamboni
P Zamboni: Chronic Cerebro - Spinal Venous Insufficiency (CCSVI):
a new vascular picture
M. Simka Poland: The link between venous and immune system
B. Weinstock Guttman: CCSVI and Multiple Sclerosis
R. Galeotti: Endovascular treatment of CCSVI: technique and results
F. Salvi: Endovascular treatment of CCSVI: clinical results on associated
multiple sclerosis

From XVIth WORLD MEETING OF THE INTERNATIONAL uni0n OF PHLEBOLOGY

I just realised, I have not looked for any published articles by "R. Galeotti", he seems to be "the man" for treatment :?
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it

Postby wobbly » Mon Jun 08, 2009 5:14 am

is a balloon procedure it is supposed 2 last between 6 months 2 six years alot i think depends on severety i m not sure if dr z has a stent yet / there was talk in italy that 1 was coming/ all i no is this really does help/ STAY STRONG ALL :lol:
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Postby notasperfectasyou » Mon Jun 08, 2009 5:45 am

Thanks NHE for the inquiry, I had sorta wondered similarly but hadn't quite figured out what to ask.

When a stent is put in I assume it pushes outward. What's being pushed and what does it push into and how does the body handle this pushing over time? It just seems to me that something elsewhere is being compressed.

So then, what exactly is the "stuff" that's narrowing the vein? Is it a plaque of some sort? There is a venous form of atherosclerosis, or would that be a completely different unrelated concern? Is the tissue on the otherside of the vein expanded? Just wondering out loud. I'd think that these ideas might help direct us in thinking about NHE's question. Ken
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Re: Other options

Postby cheerleader » Mon Jun 08, 2009 7:37 am

NHE wrote:I'm curious what other options there are to stent insertion. In effect, we know that Dr. Michael Dake at Stanford is inserting stents to correct the CCSVI stenoses. We also know that Dr. Zamboni is using a different surgical procedure that does not require stents. However, do we know exactly what Dr. Zamboni is doing surgically? Is it a one time fix? Does it require continual use of blood thinners, e.g., Plavix, comparable to the stent insertion procedure?

Thanks, NHE


Great topic, thanks NHE-
Dr. Dake said a balloon stent (like what Dr. Zamboni is doing) would open up Jeff's right jugular, but the left was closed down. He told us that Jeff would need to come back for the right side to be opened again on a regular basis, but the left would keep leaking...with stents he could repair both sides, and hopefully be done with it.

We'll see how the patency is for Jeff' stents in July.
Plavix keeps the blood flowing, but would never have corrected the two inches of disconnect in Jeff's left jugular. Nothing but stents in his case.
Everyone will be different. Jeff will stay on his endothelial health program, which is good for blood flow, nitric oxide levels, and general health.
Cure, thanks for finding the presentation schedule!
Ken, so far all of the stenosis (actual narrowing of the veins) appear to be congenital/created by body's physiology. They are not plaques.
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Last edited by cheerleader on Mon Jun 08, 2009 7:41 am, edited 3 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Mon Jun 08, 2009 7:37 am

Ken -

My jugular vein was flat - Dr. Dake's visual to me: he held up a pencil and said this is a tube, this is what a vein should look like --then he held up a piece of paper and said this is your vein (I was looking at the side or the depth of the paper). I had a 1% opening for him to squiggle the probe up into the blockage. My question to Dake was, "what is the condition of the vein if it has been "flat" for a period of time." The 1% opening kept the vein usable. If it had been 100% blocked, I would not have been able to have the procedure. Dake started to talk about what he could do with a 100% blockage, but then stopped because it was a moot point ---he had 1% to work with. The blockages are not caused by placque - they are a mechanical failure - i.e. twisted, and/or flat.
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Postby chrishasms » Mon Jun 08, 2009 7:42 am

123
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Postby chrishasms » Mon Jun 08, 2009 7:43 am

Cadaver or Pig Vein?
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Postby chrishasms » Mon Jun 08, 2009 7:46 am

123
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Postby cheerleader » Mon Jun 08, 2009 7:48 am

Vein replacement surgery would be quite invasive, but possible. So far all patients could be treated (thankfully) with endovascular/stent surgery. It will be interesting to compare Dr. Zamboni's balloon procedure results with Dr. Dake's stent intervention.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Jun 08, 2009 9:21 am

Hey dudes and dudettes, they used balloon on my neck and it collapsed back down so the amount of tissue outside the vein was not compressible in my case. Stents were the only thing in my case that would work.

And yes Ken I wonder too about the impact on the pressed tissue, didn't think to ask before the procedure. Somebody ask 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 CureOrBust » Mon Jun 08, 2009 5:38 pm

mrhodes40 wrote:And yes Ken I wonder too about the impact on the pressed tissue, didn't think to ask before the procedure. Somebody ask that !
so, maybe you should also be concerned how soft the pillow you sleep on is. :P
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Postby mrhodes40 » Mon Jun 08, 2009 8:05 pm

:lol: :P
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 peekaboo » Tue Jun 09, 2009 5:40 am

chris wrote:

And also...how or who do we get to go to this symposium conference thingy so we can find out what they say?


I emailed Dr. Dake re: copied cure's post about symposium...he responded w/a thank you so i know he read it. maybe he will go or maybe he will be able to get the speech notes and presentations.
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