Word of caution

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

Word of caution

Postby David1949 » Thu Feb 24, 2011 8:05 pm

Word of caution from someone who got pulmonary embolisms following angioplasty.

http://ccsvi-ms.ning.com/video/rachel-quilter-pulmonary
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Postby Cece » Thu Feb 24, 2011 9:16 pm

I did take Plavix, but I still had the blood clots.

This is our second reported case of pulmonary embolism. Our first seemed like an exception, she shouldn't ever have been allowed out of the hospital where she'd had the treatment but they weren't understanding or taking her pain seriously.

Pulmonary embolism is very serious. Plavix is an antiplatelet, not an anticoagulant, is that why it did not prevent the PE? Any idea if the PE was immediately after procedure or later on? It would be helpful to know when to worry about this. Whatever the case, it is very unfortunate that this happened and I wish her a full recovery.
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Postby CD » Thu Feb 24, 2011 10:23 pm

I did take Plavix, but I still had the blood clots, she said


She took Plavix like I did in the first few days. Then I clotted in my first stent. That was why I needed two more stents, and Lovenox and Warfarin too.

Plavix needs time to work, so why do they give it by itself? Did she say she was supposed to do belly shots too and didn't follow up? Or was the shot after the PE? The wind made it hard to hear the video.
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Postby Cece » Thu Feb 24, 2011 10:34 pm

I know of two doctors, when using Plavix, who start the Plavix 5 - 7 days ahead of the procedure. Seems smart to me.

There was a video on the link? It didn't show up for me. :oops:
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Postby CD » Thu Feb 24, 2011 10:50 pm

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Postby bigfoot14 » Fri Feb 25, 2011 5:52 am

Cece wrote:I know of two doctors, when using Plavix, who start the Plavix 5 - 7 days ahead of the procedure. Seems smart to me.

There was a video on the link? It didn't show up for me. :oops:


My wife's Dr is one of them..plavix for 5 days before, (not the day of) and 6 weeks after
lovenox the day of and for 7 days after.....for my wife it meant that she had to stay in the recovery room for quite a while to stop the bleeding (oozing) from the incision ....but I'm more than willing to trade that for a PE
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Postby thornyrose76 » Fri Feb 25, 2011 2:26 pm

Forgive me but after reviewing the video it clearly sounds like she had the angioplasty, had stents put in and then decided to ignore the doctors advice of which was taking daily shots in the stomach of coumidine, her reasons being that she was young, healthy and physically fit. Now knowing what some of us know, why would one undergoe the procedure and not take blood thinning medication , that's just asking for trouble. It's no wonder she got four blood clots. It's good that she's better and didn't die and that she is warning others that might go into this and do the same as she initially did...
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Postby Cece » Fri Feb 25, 2011 3:34 pm

Thornyrose, that does help make sense of it. I hadn't realized she had stents and was on Plavix only. But then CD's experience was that this is what Dr. Siskin prescribed when she had a stent placed and that's not a case of patient noncompliance, as this other one was.

It's a lot to work out. Dr. Dake put his stent patients onto Coumadin, I think he's right about that, despite the difficulties with getting the INRs right.

bigfoot, the combination of plavix, aspirin and short-term lovenox is what Dr. Sinan has prescribed, I think it's a good one. Dr. Sclafani had just changed from doing Arixtra before the procedure to doing it after the procedure, so as to have less bleeding during the compression when everything is removed post-procedure.
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Postby CD » Fri Feb 25, 2011 6:59 pm

Rose, this is my take on the few video's of hers that I watched.

She had the CCSVI procedure done three times, no stents. Now as of Feb 15, 2011 procedure she got the PE because she did not take the advice of her doctor. She restenosed each time. Each time a different vein was done, it seems. Left, right, then left again. No Azygos vein ever. Doctor put a plug in her groin which she didn't like. Was he in her arterial femoral vein and then up to the jugular? Why else a collagen plug for hemostasis?

She had 6 days of improvement, no tremors or speech problems after the third one was done.
The she didn't follow up with meds at this time and that's when she got the PE. Four lung clots.

She is looking to get it done a fourth time, but seems to go to the wrong doctors because they are on her medical plan and/or they don't have experience. One dr. said he can't do her sigmoid sinus or head veins because of the small diameter of the head veins, she said.

Now she wants the valves cut out of the clavicle area, and/or stents.

Very confusing to me. I wish her luck in getting the whole treatment at one time by an experienced doctor, and that she follows up with after care as she is told to do.
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Postby DrCumming » Mon Feb 28, 2011 3:21 pm

Cece wrote:I know of two doctors, when using Plavix, who start the Plavix 5 - 7 days ahead of the procedure. Seems smart to me.

There was a video on the link? It didn't show up for me. :oops:


Plavix options are starting 5 days before at 75mg/day or using a loading dose of 300mg day of procedure.
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Postby Cece » Mon Feb 28, 2011 4:47 pm

CD, was your first dose of Plavix a loading dose of 300 mg or was it the usual amount?

Dr. Cumming, glad to see you here on TIMS today! I've been meaning to ask in your thread if you've given up lovenox entirely for plavix instead? Is this due to what you'd been saying after ISET, that there wasn't much consensus on what anticoagulation if any?
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Postby bigfoot14 » Mon Feb 28, 2011 5:46 pm

Cece wrote:Dr. Cumming, glad to see you here on TIMS today! I've been meaning to ask in your thread if you've given up lovenox entirely for plavix instead? Is this due to what you'd been saying after ISET, that there wasn't much consensus on what anticoagulation if any?


I'm interested in this as well....my wife is having a lot of issues with the lovenox.....
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Postby Cece » Mon Feb 28, 2011 6:02 pm

What sort of issues, bigfoot?

I know of one person who had to be hospitalized because of lovenox issues after a ccsvi procedure but it turned out ok. For a patient from Canada, hospitalization here would be expensive.

I've been doing well on Arixtra (similar to lovenox with a slightly better safety profile.)
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Postby CD » Mon Feb 28, 2011 10:53 pm

bigfoot, I am sorry to hear your wife is having problems with Lovenox injections. I had no problems with them. What type of problems?

They are Sub Q. Pinch and into the skin at a slant only. Do not hit a muscle, that is painful and it will bruise and last a long time with that bruise.

I did that one time. It went in like Avonex, 1/2 of it intramuscular. I tried to pull it out so I got some in the skin only. Things happen. Oops

That was the only issue, they do bruise anyway for a few days.

Cece, As for the Plavix, I don't know. One right after the procedure. In the hospital the first time I had the procedure, they just come with a cup and say, "Take this pill." I asked what is it? She just said Plavix.

Let me check my pill container for the dosage I had to pay for 30 days worth that I took for only three days. It is expensive. Okay my pill container says 75 mg.

What I had in the hospital I looked up. I remember it was oval and pink and slipped right down with water. It was 300 mg. If my US showed flow, I would have been on 75 mg of Plavix a day.

Since I had the second procedure, it was Lovenox 10 days and Warfarin a few days after, until I was in a 3 INR range. Then monitored weekly to stay between 2 and 3 INR. My blood keeps wanting to clot. I am not a free bleeder.

I have given myself IVSM and when I pull out the heploc, even after the heparin shot. I do not bleed. Yet the nurses never have trouble finding or getting blood from me, go figure.
Last edited by CD on Mon Feb 28, 2011 11:20 pm, edited 1 time in total.
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Postby CD » Mon Feb 28, 2011 11:00 pm

Dr Cumming said, "Plavix options are starting 5 days before at 75mg/day or using a loading dose of 300mg day of procedure."

This makes sense. It gives Plavix a chance to start working so the red blood cells are not sticking together.

I don't know if I had a loading dose.
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Edited to look up pill. The hosptial gave me a pink oval pill. That is 300 mg of Plavix, right after the treatment. My 75 mgs are round and pink.
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