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

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Postby chrishasms » Fri Nov 27, 2009 10:05 am

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Last edited by chrishasms on Sat Dec 05, 2009 1:29 pm, edited 1 time in total.
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Postby LR1234 » Fri Nov 27, 2009 10:10 am

I am going to ask if I can start with a balloon in Poland so I totally understand.
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Postby ozarkcanoer » Fri Nov 27, 2009 10:51 am

Chris... I visited an interventional radiologist's office this week to take some CCSVI materials to the doctor/professor I am going to see when I get back from Detroit. I had a very nice conversation with his RN, who was very nice, smart and capable. We were talking about the stenting procedure and she said that ballooning is much safer than stenting. Just give some thought to this now that Radek has gone through this complication.

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Postby LR1234 » Fri Nov 27, 2009 10:53 am

The thing that really bothers me is Cheer mentioned (hope I am not misquoting) that Dr Z treated those with low stenosis in their jugular veins and I got the impression that ballooning is not an option for high stenosis.
I know mine are high C2 so does that leave me with only the stents as an option?
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Postby cheerleader » Fri Nov 27, 2009 11:24 am

LR1234 wrote:The thing that really bothers me is Cheer mentioned (hope I am not misquoting) that Dr Z treated those with low stenosis in their jugular veins and I got the impression that ballooning is not an option for high stenosis.
I know mine are high C2 so does that leave me with only the stents as an option?


It depends. I was restating something the Dr. Dake mentioned to me about people that presented like my Jeff....almost complete occlusion of his left jug (95%) from a very high place-C2-4...he said Zamboni was not treating folks like him and ballooning would not work. Zamboni referred to these patients as "progressive"...the very high bilateral jugular vein occlusions were serious. Jeff was still considered RRMS, but his occlusion and stenosis were SEVERE- we have no idea how he would be a few years from now.

Ballooning quickly closed down in Jeff. But Jeff is older (46) and his blockage was severe. He needed the stenting, and for him, Thank God, it has worked. Everyone is different, and doctors are still learning. If you are younger, maybe the veins will be more flexible and open to ballooning. The other fact to consider is that 47% of the jugular stenosis closes back up after Zamboni's ballooning procedure. That's alot of endovascular ballooning procedures to stay open.

I do not know the answer. It will be different for everyone. Dear radeck's situation is horrific, and shows us all how much is still unknown. I continue to urge caution. No one should do anything that makes them uncomfortable. I wish we had a time machine or crystal ball, but we don't. There appears to be a huge correlation to stenosis, reflux and MS progression....but we're only in the beginning.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bluesky63 » Fri Nov 27, 2009 11:53 am

This is one of our most gut-wrenching decisions -- weighing potential risk against potential benefit.

For people who are facing disability and a tough prognosis, there's less time to wait for new treatments, for safety data, etc.

Cheerleader, the info about Jeff's veins and Dr. Dake's comments are sobering.

But Chris, until you get your testing done and see what you're actually dealing with, you don't have to make a decision, do you. :-) I think when you see your actual visualization of your own personal veins and any actual abnormalities right in front of you, you'll be able to make a better decision.
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Postby Sharon » Fri Nov 27, 2009 1:21 pm

Chris -

The news about Radeck has shocked all of us. Dake is no doubt reconsidering some of his protocol at this moment. Like Cheer mentioned, there are some of us that the balloon did not work. My vein collapsed immediately after it was taken out. My daughter's blockage was high at C-1 -- the vein was plastered against the bone....ballooning would not have worked for her either. It comes down to assessing your own risk/reward. You also need to remind yourself that having the procedure is not a guarantee to symptom relief. I hope that others that are scheduled for the surgery, like you, are questioning "is this the right thing for me to do?". Unfortunately, I believe that many of Dake's patients have got caught up in the fervor of the moment and have not really evaluated the situation. This is a medical procedure -- there are
risks.

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Postby marcstck » Fri Nov 27, 2009 1:29 pm

I originally posted this in Radeck's thread, but it seems to be very pertinent to this one, so I'm posting it here as well, at the risk of catching even more crap...

I'll probably catch all kinds of crap for saying this, but it's impossible to say that this is a "an incredibly rare complication", since so far the surgery has only been done on about 60 people, and one of them has had a stent come loose and travel to his heart. Not much is known about placing stents in veins in general, and even less about placing them in jugular veins. All we can say with certainty is that, given the current data, there is a 1 in 60 chance of this kind of complication.

The NIH has been sternly and adamantly warning me against doing the surgery since I first mentioned it to them. They practically made me promise that I wouldn't fly off to Stanford to get the procedure. Among the reasons they cited are brainstem infarcts, blood clots, and the uncertainty of how stents would react in the CNS venous system.

When placed in arteries, which get narrower in the direction of blood flow, a loose stent only gets pushed deeper into the narrowing artery, which keeps it from traveling further and causing damage to other parts of the body. Veins, on the other hand, grow wider in the direction of blood flow, so if a stent becomes loose, there is nothing to keep it from reaching the heart.

This is a serious problem that needs to be addressed. In no way should it be minimized, or thought of as an extremely rare event. We simply do not know enough to make such an assertion. Balloon angioplasty, though not without its share of complications, is a relatively benign procedure. Placing stents in a patient's veins carries with it many unknowns, one of which has now been exposed because of radeck's extremely unfortunate experience.

This is experimental surgery. It's important to go into it with eyes wide open
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Postby ozarkcanoer » Fri Nov 27, 2009 1:38 pm

marcstk,

I think what you said makes a whole lot of sense. There needs to be a lot of research on how to treat CCSVI. I have always wondered why Zamboni only does balloon angioplasty and never uses stents. Dr Zamboni is a smart man and doesn't want to risk CCSVI by doing too many risky preocedures too soon.

But I also understand why Jeff and others would go ahead with the stents. MS is a terrible disease and people will take risks for relief from the Chinese water torture we endure every day.

I am going for Dr Haacke's imaging in Detroit, but when I return home I have an appointment with a professor/interventional radiologist here at the medical school in St Louis. I hope he can advise me.

Thanks,

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Postby marcstck » Fri Nov 27, 2009 1:43 pm

ozarkcanoer wrote:marcstk,

I think what you said makes a whole lot of sense. There needs to be a lot of research on how to treat CCSVI. I have always wondered why Zamboni only does balloon angioplasty and never uses stents. Dr Zamboni is a smart man and doesn't want to risk CCSVI by doing too many risky preocedures too soon.

But I also understand why Jeff and others would go ahead with the stents. MS is a terrible disease and people will take risks for relief from the Chinese water torture we endure every day.

I am going for Dr Haacke's imaging in Detroit, but when I return home I have an appointment with a professor/interventional radiologist here at the medical school in St Louis. I hope he can advise me.

Thanks,

ozark


Believe me, I completely understand why someone would go ahead and get the stents. I've been watching myself whither away for the last 6 1/2 years, and quite frankly, there's not much withering left to do. At this point, my tolerance for risk is quite high, which is why the NIH has been so stern with me in regards to the stenting procedure. They're acutely aware that I am far from risk-averse...
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Postby bluesky63 » Fri Nov 27, 2009 2:24 pm

Best wishes to everyone. :-)
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Postby chrishasms » Fri Nov 27, 2009 2:54 pm

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Postby MS_mama » Fri Nov 27, 2009 2:59 pm

I'm thinking the same way as you Chris--about just asking for a balloon angio (even though I haven't got an appointment, just theorizing). It's a tough decision, especially with this latest complication.

Marc, I really appreciate your post on this and Radeck's thread--I don't think you'll get any crap for it, a lot of us have been following your posts and blog and you're well known as one of the most logical and unbiased folks out there. We really need all the info we can to make a decision about testing and treatment. I wish you the best in your own medical mystery!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Sharon » Fri Nov 27, 2009 3:25 pm

Bluesky wrote
I was not at all trying to weigh in on the likelihood of risks or open a discussion about that. I am by no means qualified to do that! But the way my comment has been quoted looks as though that were my intent


Blue - when we post something on this forum, we are giving an opinion or making a statement ---- these can be bogus, truthful, playful, intellectual, inciteful, etc., etc. No matter, we learn from each other. There are some on this forum (thank goodness!) who are have the background, the capability and the desire to present and explain the medical issues. You no doubt recognize the names of the members who are very astute individuals. Then there are those of us who do not have the medical expertise.....we offer the layman's simplistic version.
We are all adults here on this forum (at least I think so! :oops: ); we are opening ourselves to a public forum in cognito. You made a statement and from that statement a discussion persued. IMHO, Chris and the rest of us have spent some time thinking about the risks involved with CCSVI --- this is a good thing!

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Postby cheerleader » Fri Nov 27, 2009 3:28 pm

bluesky...
don't feel badly. We all understand. My words have been copied, pasted and misconstrued more times than I care to count. It's happened to all of us-thus Marc's getting crap comment.

You weren't trying to cover up anything, and all of us here are laypeople: patients and caretakers. (exceptions:Marie's an RN, EyeDoc is an eye doc, GiCi is a cardiac surgeon...but I think that's it.) The honest is truth is, this is all new, and no one can tell us what will happen in the future. Studying the jugular veins, stenosis and ballooning/stenting in this area is brand new. I guess the major point is that we need to keep testing and encouraging research.

The good news is that Zamboni's angioplasty protocol has had no complications other than temporary headache. Maybe the earlier the intervention, the less intervention will be needed. We'll keep learning, together.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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