Oh, Radeck?

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

Postby Sharon » Fri Nov 27, 2009 12:44 pm

Oh, my gosh! Oliver, I cannot believe this has happened - I am shocked. I wonder if Dr. D. would agree with Gici's post, that where the stent was placed was inmaterial -- Gici thanks for the info. Sorry Radeck that you had to be "a learning moment" for Dr. D. and the CCSVI story. We all have known that we are pioneers -- there are no guarantees, and Marie has reminded us many times about the possibility of a stent getting loose --- we just did not believe it could happen.
Take care, gets some rest

Sending you positive thoughts, prayers and energy
Sharon
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Postby SammyJo » Fri Nov 27, 2009 1:04 pm

Radeck, Doug and I were so sad to hear of your complication. We are sending you all the good energy and prayers. SammyJo
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Postby marcstck » Fri Nov 27, 2009 1:14 pm

bluesky63 wrote: This an incredibly rare complication. Even if you had known all the details about this in advance, how would you ever have thought it would happen to you when it almost never happens to anyone having a stent procedure?


I'll probably catch all kinds of crap for saying this, but it's impossible to say that this is "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.
Last edited by marcstck on Fri Nov 27, 2009 5:04 pm, edited 1 time in total.
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Postby bluesky63 » Fri Nov 27, 2009 1:27 pm

Best wishes to everyone. :-)
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Postby ssmme » Fri Nov 27, 2009 1:34 pm

I hate to hear this happened to you Radeck. It makes my heart swell when I read how others out here are genuinely concerned for you and wish you the speedy recovery you deserve.

When the stent dislodged and they removed it did they place a new stent in your jug or have they or you decided it's not worth it?

Take care!!

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Postby marcstck » Fri Nov 27, 2009 1:39 pm

bluesky63 wrote:Marc, I guess I was thinking "rare" because I tried to research this complication and the statistics showed it to be rare for cardiac patients -- but it's certainly true that the vessels are different, and this particular procedure is a whole different world.

And in stressing "rare" my other thought was to keep Radeck from being too hard on himself in believing he could have anticipated this one. :-) But my language was too extreme. Really, my goal was mainly to offer sympathy to one person, Radeck -- not to misrepresent the risk to all people considering the procedure. Balance, balance. Clearly I need to go back for my medical degree before I make any more posts here. :-)


It certainly was not my intention to upset radeck, who has my deepest sympathies for his current situation. Based on the available information, there was no way for him to anticipate such an event, and I hope that he knows that he is entirely blameless for the situation.

However, in comforting radeck, we must not paper over the realities of the situation. Many newbies are reading this thread, and it's important that they get accurate information, both good and bad. Radeck has alluded to as much in some of the the posts he's already made on this thread.
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Postby flipflopper » Fri Nov 27, 2009 1:55 pm

marcstck wrote:
bluesky63 wrote: This an incredibly rare complication. Even if you had known all the details about this in advance, how would you ever have thought it would happen to you when it almost never happens to anyone having a stent procedure?


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.



I completely understand how anyone who has ms would want to get treated with the best treatments and as soon as possible. I would give anything to have an effective treatment for myself right now.

But, I think it’s great that you’re mentioning this Marc. I agree with you.


I think CCSVI should be researched and I am very happy that it has received a lot of media attention in Canada recently. However, I personally think it’s probably too early to schedule an appointment to be tested (ouside of a clinical trial) and then treated for CCSVI without thinking about the fact that there are risks associated with the procedure. Moreover, at the moment, we don’t know the level of risks associated with the procedure.
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Postby fernando » Fri Nov 27, 2009 3:22 pm

So sorry to hear the news.

At least, this, too, will pass. I pray God that in a few weeks you will experimenting recovery not only from your surgery but from your MS too.

Keep the faith.
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Postby whyRwehere » Fri Nov 27, 2009 4:51 pm

Bless you, you poor man....I hope you heal up fast!!
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Postby Shannon » Fri Nov 27, 2009 5:43 pm

Radeck - Rest well, you've been through so much. We are all so very grateful that you were willing to pave the way for the rest of us. After all, someone had to be number __(insert number here), right? I understand that you are in the most capable of hands, and I will be praying that the Lord is looking after you as well. Take good care.
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Postby radeck » Sat Nov 28, 2009 7:46 am

Marc, I fear I have to agree with you, and the risk might well be higher than you say. This is because a new development is that they now use narrower upper-jugular stents to decrease the risk of accessory nerve damage. This of course increases the risk of them dislodging.
Last edited by radeck on Sat Nov 28, 2009 8:50 am, edited 1 time in total.
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Postby jimmylegs » Sat Nov 28, 2009 8:13 am

i only just clicked on this topic for the first time - so sorry to hear about your situation radeck and i hope your recovery is as fast and uneventful as possible.
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Postby Loobie » Sat Nov 28, 2009 8:32 am

Marc,
Your assessment is so spot on. I chose to do this damn the risks, but it was my choice and I did it not even really knowing the risks. Now that some of them are known, everyone needs to know that this isn't a trip to the dentist. There are so many people who read my blog and read about this on Facebook that are sort of doe eyed since there have been so little choices for so long. I had at least two blog posts about my shoulder/accessory nerve damage for just that. There are risks and anyone who now goes in should understand them. Like I said, I did it anyway and just kept my fingers crossed. I was, and still am, upset about my shoulder as my upper body, to date, has not been affected by my disease, and I was working out pretty strenuously in the upper body. I can't do that now. It does suck and hits you a lot harder once things settle down and you go 'back to life'. My right arm had become my dominant limb and now it's limited. It may come back, but it's not like physical therapy after surgery when you're just getting back strength from atrophy. I can't progressively work it harder since the nerve is damaged. I just have to keep range of motion back until the nerve heals to the point that it will heal; which will never be 100%

I also asked you Oliver if I could post, not the part about the decision and all that, but about the potential risk. People need to know the truth; flat out, end of story. And now that you've said I could, I plan on posting not necessarily a cautionary tale, but just putting the risks out there in black and white. I have to be honest, I'd have probably still decided to go ahead with it, but many may not have had they been armed with these facts. And that's what they are now, known potential complications.

I imagine my stents have now taken pretty good hold since they are the 12 mm ones and are not only "jammed" in there but have lined themselves with venous cells as was confirmed at my last follow up. Everyone going into this needs to know the risks flat out. I must admit to being upset with Dr. Dake as well. My friend's 24 year old daughter who had this done about 7 weeks ago was not warned about the accessory nerve potential and only asked about it because I told her to. To me, that's not cool. Like Marc said, me, Marie and Sharon all had the nerve banged pretty hard and that was 3 of the first 14 patients. So doing the math, that's just over a 20% chance of that happening. That's not "negligible". And now that the size has been adjusted to compensate for that, we now have what happened to you. Is that going to increase now?

We really all are teaching moments at this point. Like I said, I probably would have done it anyway since that's the type of person I am. That approach to life has served me well at times, but it's also bitten me in the ass pretty hard at times. But many are much more cautious than me, and many, like you Oliver, were not as severely affected by MS and could say "I'm going to wait and see what happens for a while". So as I said, I'm going to post about what happened as you said I could, but not about the decision to do it and the interactions between you and Dr. Dake. Simply going to put it out there as a "this happened" and you should all be aware who elect to proceed. I'll wait a few days to put it out there and let you tell me if you even want me to. You're head must still be spinning; but I do feel obligated to talk about it. I talked about our shoulders, about Holly and now I think people just need to know. It's not like you get a pamplet with this procedure like a vasectomy. There's no "what to expect" manual yet. We have to do that.

I'll finish with wishing you nothing but full and speedy recovery. This had to have scared you half to death. You and your family are so pleasant to be around and I hope you are on your feet again very soon.
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Postby MrSuccess » Sat Nov 28, 2009 10:14 am

Lew , your statements are misleading. By all accounts - including yours - stent surgery has been benefical .

It is unfortunate that a small fraction of Dr. Dakes stent patients have some shoulder/nerve pain. The majority do not. As far as we know as not all post here at TIMS.

As I said before , Dr. Dake responded to the shoulder complaints , and modified his procedure . Other than Radek .... with success. I suspect Dr. Dake will revert to his original stent calculations.

Lew , has the idea that the stent itself - Radeks - may have been faulty crossed your mind ? :evil:

As always , I find your posts interesting . I think I have read most if not all of them . Am I correct in saying you are a very impatient man ? I think you have said that about yourself from time to time.

Your shoulder will need time to heal .

As we all are sadly aware , one of the stent patients -Holly - died after receiving her surgery . It was proven to be unrelated to her stent surgery.
The CCSVI critics hopes were dashed.

From all I have read about Dr. Dake , you can bet the next stent patient will be 65 times more safer than before. We learn more from negitive than positive experiences .

For now , let's not give the CCSVI critic's any fuel for their fire. :idea:





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Postby cheerleader » Sat Nov 28, 2009 10:17 am

mr. success-
please stop trolling. You are a provacateur, and we don't need it. Seriously. You take up precious space on this website. Let the folks who understand this discuss it uninterrupted.
Thanks, Lew-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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