This Is MS Multiple Sclerosis Community: Knowledge & Support

Thank you Johnson. Well put.

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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

i"m a quadriplegic with my name on a list for a residence next year. i don't have any problem accepting stents if needed

I think I forgot to mention what I would consider "advice" when it comes to these things, for anyone having a procedure anywhere, especially should you decide to not "go local". I know for me, there was a one month lead up from my procedure appt, to the consult then procedure.

I would highly recommend, that anyone considering any procedure anywhere, regardless of the Dr. and/or experience level, to keep a notepad handy throughout the day in the time leading up to the appt. (This was essential for me, as a thought/question readily grasped, was gone two seconds later, never to be heard from again), and write down your questions, even the most trivial ones.

There's this sense that we just walk in, get the testing, then the Dr. tells us what we are going to do and/or presents the options, we make a decision and that's that.

However, if you are like moi, no matter how well things are thought out in advance, that all kind of vanishes into thin air the second I see a white smock with a stethoscope around the neck. Don't know why, don't care, which is why that LONG list of questions I had was ready to go. They may answer half of them beforehand, or during the consult, but NOW is the time to formulate the questions, write them down instead of committing to memory. You'd be surprised how easy it is to forget that stuff in the heat of the moment. Toss in cog/fog issues, and it only worsens. I can think of about 10 or so important ones, but everyone has their own set, but my thought is, if someone is unable to even formulate a question about the procedure, to ask whatever doctor in whatever location about their approach, methodology, aftercare and the like, then it might be best to hold off and do more research before undertaking the procedure, since there really isn't a CCSVI manual for Dr's to consult, specific to our condition of course not angioplasty per se...

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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

Word, Mark.

That is excellent advice. Things can be very different on the table, from what is pre-supposed.

I feel that one of the most important things to know before-hand is whether you will take a stent or not, and to be clear in one's reasons. If you are prepared for a stent, do you have a plan for when you return home (after-care)?

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My name is not really Johnson. MSed up since 1993

Yup. Honestly, I feel sorry sometimes for the good Dr. Z, when I see some of these advertisments from Costa Rica or wherever, that mention Liberation procedure, but fail to mention they may or do use stents, when technically the specific Liberation procedure as coined by Dr. Z had nothing to do with that whatsoever, which is why I think there's a concerted effort (too late) by the media to separate the two, although stent-based angioplasty doesn't necessarily have it's own coined phrase.

My sense is that early on they just lumped it all together under the umbrella of "MS treatment", and while the early CTV reports focused exclusively on Dr. Z, hence "Liberation procedure" was used, (and Stanford wasn't even mentioned), and phrases like "Liberation War" were the finishing touches from the media perspective, only now are they being a bit more careful to delineate the two, but my guess is the genie is so far out of the bottle, that parsing synonyms is near next to impossible. You'll note the latest article in another thread about an angio/liberation success story, at the end, clearly stated that "complications were a result of using stents, which is not the Liberation procedure", giving the false impression (again, they are so GOOD at this), that as long as stents are avoided, all is well on the Western front.

I hate it when they ruin a near perfect article right at the end lol.

I'm guessing that by the time our thread starter/original questioner gets close to procedure, there will be even more known, and maybe more knowledge to base a decision on. How do you ask q's on the table, I was told to be very very still and don't talk! lol. (My wife can't imagine me not being able to talk)

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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

Be prepared if you do get a stent:

It is very important to maintain the proper INR levels!

Initially, this should require a simple blood test every few days to monitor your INR level so that adjustments can be made to the dosage of blood thinner (Coumadin, Warfarin) you take daily. Once you achieve the correct dosage, blood tests can be done less frequently.

BE AGGRESSIVE when beginning blood thinning therapy!

It is important to maintain INR levels between 2.0-3.0 (normal blood is 1.0).

You will probably be given shots to bring up your INR until the oral meds kick in.

If you do not achieve and maintain these levels quickly, you risk clotting!

A/C

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

Ditto that. FWIW, when I went in for my follow up (planned well in advance, not an emergency) angioplasty in April, I was given a pretty good shot of anti-platelets right on the table, before even leaving the op room, then a script for Plavix to follow up on. My blood was so thin, that getting upright after an hours flat bedrest caused my incision to gush open, a minor inconvenience, one more hour's rest and was good to go. I was pretty confident at that point that at least my platelets were rocketing by each other, though I don't know why they were in such a rush.

For those going on Coumadin, it's a completely different story, as you state, and has been stated many times on TIMS, INR monitoring is absolutely necessary for actual blood thinners vs. anti-platelets, all hypercoagulation issues aside of course.

If I were doing this now, with not having a clue where my #'s are, I'd pay out of pocket if I had to for some hard coagulation numbers. Ignorance is bliss as they say, but it's up to each person to take responsibility for the knowledge they possess and act/don't act on it. That's one more question for the list too which I'll admit to not even asking myself last August...

Also what has been stated, and bears repeating often, is to try to maintain your eating habits pre-post op for INR stability. The meds are then adjusted to accomodate that. Some eat all that Vit K rich stuff, some do not for example, the key is stability, not avoidance or inclusion when it wasn't part of your regime prior to the introduction of the meds. My INR's went all over the map the first couple months, but I'm a crazy eater too so that was mostly my fault. Luckily the lab people I went to were cool fun so I looked forward to going there as often as needed. Updates went to both Dr. Dake AND my GP on at least a twice weekly basis.

I was a bit shocked myself when I heard people talking about stenting in Poland or wherever, and just coming home with a Plavix scrip if that and/or aspirin, which kind of assumes no monitoring, as there's nothing to monitor for anti-platelets. Yikes, this thing is difficult enough as it is, WITH monitoring, AND going local, remove those two parts of the equation, and you are truly flying blind.

Be careful out there, and test everything you read, no matter the source, and make up your own mind in conjuction with your medical professional near home, regardless of where you are treated.

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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