Oh, Radeck?

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

Postby radeck » Sun Dec 06, 2009 7:54 pm

Just to mention two things, there's still the strong pulse in my head and neck, with actual motion so strong it makes it difficult to sleep. Furthermore my resting pulse is 40% higher than before the stents/surgery. It is now 78-88/min when it used to be 55-65/min. I don't know why.

One idea I mentioned to Dake is that the stented veins press on the carotid arteries and make it hard for my body to get blood into my head. This is pure speculation based on seeing the MRV images showing that the jugular veins and carotid arteries often share a tight space. Now the cross section of the jugular veins is increased by a large factor and maybe the space can not accommodate them after having been used to less for many years.
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Postby LR1234 » Mon Dec 07, 2009 5:10 am

I think a resting rate of around 70BPM is normal.
Mine is too low at 50 BPM and when I got pills to raise my heart rate I had more energy and less fatigue. So maybe that isn't a bad thing that your rate has become higher.
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Postby patientx » Mon Dec 07, 2009 8:00 am

LR1234 wrote:I think a resting rate of around 70BPM is normal.
Mine is too low at 50 BPM and when I got pills to raise my heart rate I had more energy and less fatigue. So maybe that isn't a bad thing that your rate has become higher.


I don't know. A person's resting pulse is a very individual thing, depending physical makeup, weight, cardiovascular fitness, etc. If Radeck is noticing an increased heartrate in the absence of other factors, it might be something to investigate. But, I'm not trying to cause undue concern.
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Postby Algis » Mon Dec 07, 2009 8:32 am

Radeck is an 'open-heart' patient recovering ~first ~ I dont know where he is (I hope in good loving hands) and I dont know who takes care of him in your "civilized" countries.

I just know that here every one Doctor and Nurses will be around checking and caring - And he'd have no time chatting on internet... (and nobody ask if you paid or what you insurance is...).

Let him recover his accident (mistake, wrong-doing or whatever) and then it will be ok to evaluate what is going and what isn't... And maybe find out why...

That was my rant - please forgive me :)
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Postby CureIous » Mon Dec 07, 2009 10:47 am

Radeck buddy, just to get back to your earlier post about the stents, those from what I surmise are memory metal. This stuff is good for what it does, the one's I run across at work are incredible, you twist or "squish" them into any shape, and application of heat will bounce them back to original shape every time. http://en.wikipedia.org/wiki/Shape_memory_alloy

I believe there are two types of stents when we speak of this, balloon-expandable and memory metal, with obvious implications for both. From what I've been able to gather (and from the metals I have worked with), the stainless steel/tungsten/cobalt type stents are balloon expandable, and the nickel alloy types are memory metals, and I'm not sure if there are many shades of variation in the middle there.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Mikkysgl » Thu Dec 10, 2009 1:44 pm

Radeck

Your courage is amazing! A true pioneer...I am humbled by your honesty, your straightforward approach, and your willingness to share your trials through all you hve been through. I add you to my prayer my list - recovery, comfort and healing

thank you
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Estimates for the survival of stented jugular veins

Postby radeck » Fri Dec 11, 2009 8:57 am

I was wondering if some of you have talked to or could talk to vascular surgeons or others who may be qualified, and get a second (or first) opinion about the patency of venous stents, in particular educated guesses about the patency of jugular vein stents.

This was one of two questions I asked a handful of vascular surgeons over the last two weeks (the first question had been if I could have any of the stents I got surgically removed, and they pretty much agreed that this couldn't be done safely because of the low flow state of veins and resulting risk of thrombosis. The patency question was then the natural follow-up). I was told that long term data are mostly on iliac vein stents (in the hip) and sub-clavian vein stents (under the clavicle). I was told that while survival of stented iliac veins can be as high as 80% over 5 years in some studies, survival of stented sub-clavians was much worse, apparently because they're in a more mobile area and also because they can get crushed. While some of these doctors didn't want to extrapolate directly from one vein to another, some said that the survival of stented jugular veins could be even worse, because mobility was even higher than that of the sub-clavian vein. I don't know what the risk of fracture are in the jugulars, but was told that fracture in vein stents often means that the vein segment has to be surgically removed, because of excessive thrombosis. Two of the vascular surgeons expressed concern that I had stents in both of my jugular veins because, they said, I needed at least one of them in the long run. I was told that veins can in principle be reconstructed out of veins from other parts of the body (assuming that these are redundant), but that this didn't have a high success rate because the grafted veins often thrombosed, and required life-long anti-coagulation.

This is just what I've been told, and I'd be happy to hear expert opinions that disagree with this. There are no long term data, but vascular specialists often have some kind of intuition for these kinds of things given their experience, hence they can come up with educated guesses. Hearing an educated guess that there's a chance I will still have jugular veins in 5 years would really help me emotionally right now.
Last edited by radeck on Sat Jan 16, 2010 5:07 pm, edited 2 times in total.
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Postby jay123 » Fri Dec 11, 2009 9:12 am

I worked with a guy who's wife sold them (she actually sat in operating rooms during surgeries). I am trying to get a hold of him to see wht she can find out.
Good luck
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Postby magoo » Fri Dec 11, 2009 9:27 am

Dr Dake believes they will last a lifetime. His educated guess.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby zap » Fri Dec 11, 2009 9:41 am

Radeck -

Interesting to hear - my research (inspired by your troubles) led me down the same paths - found that iliac veins had high patency, but the more mobile and crushed subclavical veins have more trouble:

http://www.thisisms.com/ftopict-9027.html

(If you go to that thread, you'll see that others responded to my concerns with some positive research (skip past the bickering to page 3) ... I hope it is helpful, although looking back it doesn't appear to me that the issue of long term durability of a compressed, mobile stent is addressed.)

I wish I could find better reason to hope for a future free of complications, but I guess that the fact is that this is novel territory we are entering into, and you are one of the pioneers. There is no history to give guidance - you're creating that history now ... which I know is no help or comfort - but I have faith that techniques will arise out of necessity to deal with any problems that stem from this pioneering work.

If CCSVI is indeed a causal issue to MS, there is no doubt that TONS of money will be poured into finding a way to defeat it.

Keeping stents open and functional long term - and fixing any problems that may occur with them - will be a huge part of this (given the apparent inadequacy of angioplasty for jugular stenoses). I am sure you will have many of the best and brightest minds working hard to keep your jugulars open ... good luck, and thank you.
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Postby bluesky63 » Fri Dec 11, 2009 9:41 am

I have a friend here, a cardiology professional, who says the same as Dr. Dake and whose mother has a stent like this (though for a different reason). I found this reassuring and I hope it helps you. :-)
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Postby radeck » Fri Dec 11, 2009 10:06 am

Rhonda, that's why I wonder about second opinions. The obvious question is why the life expectancy of stents in jugular vein would be so much better ("a lifetime") than for veins where the same stents have been used for many years, which are less mobile and therefore less prone to problems? Bluesky, perhaps you could ask your cardiology friend how he thinks it could be better in the jugulars? If the estimated life expectancy of stented jugular veins were the same or worse than for iliac or sub-clavian vein stents (as some of the docs I spoke to seemed to believe), many might reconsider if they want them. This is because disability progression without jugular veins a few years down the road could end up worse than continuous disability progression with malfunctioning jugular veins.

Perhaps the docs I spoke to were too pessimistic, but at least they gave a reason for their pessimism (mobility of the stented area).

Most of you know that I had been concerned about stents for a long time, but now I'm even more worried.
Last edited by radeck on Thu Dec 17, 2009 3:02 pm, edited 2 times in total.
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Postby patientx » Fri Dec 11, 2009 10:23 am

Radeck,

I don't have any answers for you, but I do have a question. Did the vascular doctors you spoke with indicate what they meant by patency of the stents? What is only a question of stent fracture, or were other things possible, like thrombosis forming at the site of the stent, or an actual collapse of the stent?


Sorry that you're having to deal with all this, on top of having unfounded aspersions thrown your way.
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Postby cah » Fri Dec 11, 2009 10:28 am

Hello Radeck,

wish I could come up with an experts opinion on this issue, but I haven't one. But in the last view days I read a lot of studies about vein stenting in german and english language. One thing that I noticed: In most cases the stents were placed in patients with severe health problems, many of them quite old (+65, sometimes 80). Many of them had cardiac problems, cancer and/or blood that's likely for thrombosis. Usually when stents are placed, the vein tissue is already damaged and the blood is thrombotic. Though we cannot know the long therm risks of stenting an obstructed but otherwise healthy vein, I think it cannot be compared to stenting an ill, damaged vein with addidional thrombotic blood.

It's kinda hard for me to make clear what my point is in english as it is even hard to do in my native language, I'll try with an example: If you have a drain that drains muddy water and is obstructed by mud that attaches to the drain walls, it is obvious that if you just remove this mud but don't clear the water otherwise, it is likely that mud will attach to the walls again. But if you have a drain that drains clear water and is obstructed mechanically, let's say through a sharp bend, you remove the bend and everything will be fine FOREVER.

Moreover, there are many reports that say that the material of the stents were strongly improved in the last few years, so that you can't compare experiences from even five years ago with today.

Having said that, I think it's an quite encouraging thought but I nevertheless don't want to downplay the risks.

Here's another, quite encouraging story for you (and of course all others, too).

My father was hemophiliac. So he had to inject himself coagulation factors. But the drug was polluted, which led to a cirrhosis of the liver. The docs here in our town said to my father "We cannot do anything for you as it is impossible to transplant an organ to a hemophiliac. You just would bleed to death straightly. Make a good last year to your life." but my mother didn't settle with that and fought until she found some docs that would do the transplantation. Finally she found them and a matching organ was found - four weeks before my father would have fallen into coma. So he was transplanted, he just got an extra dose of the coagulation factors and everything went fine. THIS WAS 17 YEARS AGO. My father has some health problems, but not with the liver, this is just fine. No doc would have forseen this, no statistics would have told that. If he just accepted what studies and even experience and intuition of his (former) docs had told him, he would have died 16 years ago.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby CureIous » Fri Dec 11, 2009 10:49 am

I think we're going to end up in the "depends on which expert you ask" category here. So much to ponder here. Not so sure that angioplasty is a failure, as a restenosis is easily retreated. If someone were to ask a patient, "would you like a 50/50 shot at having another angioplasty in a few years+, or permanent stents that are unproven in their application, and very difficult to treat once they become a problem?"

Seems like either proposition is a coin flip.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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