Clot in Stent!

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

Clot in Stent!

Postby Peaches1 » Thu Sep 30, 2010 4:53 pm

I had my doppler ckup yesterday, it showed a clot in the ILV in the stent, they took me to ER saying it was life threating, paged Dr S numerous times, not answer. They said no doc would touch me until they talked to Dr S. Finally sent me home last nite at 11pm
I paged Dr S's office again twice today, no anwer yet!!
So, back to no blood flow in the left jug like beginning, now have a stent to deal with.......What now?
Help.....still no call from Dr S or his doc on call.
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Postby Interrupted » Thu Sep 30, 2010 5:05 pm

I don't know the answer Peaches, but I really hope he gets in touch ASAP and the situation resolves. Keep us updated as i've wondered what people do in the situation you're describing, before. Stay calm and love to you xxx
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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Postby newlywed4ever » Thu Sep 30, 2010 5:42 pm

I am hoping you've heard back by now. If not, please let me know if you do not have his pager #. On my post procedure instructions, there's at least 5 different phone #s.
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Postby Cece » Thu Sep 30, 2010 5:47 pm

Peaches so sorry you're dealing with this, I hope he gets back to you in the morning.
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Postby whyRwehere » Thu Sep 30, 2010 9:15 pm

hmmmmm, not good. Hope you get the treatment you need.
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ph call

Postby Peaches1 » Thu Sep 30, 2010 9:24 pm

Dr S called me tonight, and will look at my doppler tomorrow am, FedExed it to him.
He says not to get too worried, he kept asking me how I felt, if I still felt good, if nothing had changed, if I had lost any improvements that I had gained after the procedure...I said NO, I thought I was doing good. He said to focus on that.

He is finding that when people have follow up test when they are feeling good, something abnormal may show up anyway.

He is finding this with people, so now he is not getting follow up test unless one losses improvements that they had. He said the clot could have been there since I left NY mos ago or it showed up days ago

So he said as long as I am feeling better w/ no losses, or feeling bad again, the risk of doing something just because of the clot is too risky.
He said to get back on Plavix, I took it for 3mos after procedure, that is what he prescribed. He also said to take one asprin daily.
I will report back tomorrow after the ph call.
Thanks everyone
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LDN, Prokarin
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Re: ph call

Postby costumenastional » Fri Oct 01, 2010 3:13 am

Peaches1 wrote:So he said as long as I am feeling better w/ no losses, or feeling bad again, the risk of doing something just because of the clot is too risky.


:?:

I am afraid I lost the doctor here, sorry. If i got this all right, a stent was placed In order to improve blood flow out of the brain and for improvements to happen. Now, there s no flow but you have to stay like that until you feel you are loosing your improvements?

Is there a chance for the clot to dissolve only with Plavix and aspirin? Does the dr believe so?

Peaches, sorry that you are in this trouble. Please keep us updated if possible.
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Postby Interrupted » Fri Oct 01, 2010 3:20 am

I don't get the response either costumenastional. But more for the fact that the clot is just being left when, as the ER are worried, it could be life threatening if it broke away. I'm assuming for some reason Simka doesn't agree and thinks it will stay safely put :?: Very odd that the decision is based on the feeling of benefit over the actualy clot itself.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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Postby costumenastional » Fri Oct 01, 2010 3:27 am

I don't know if the situation is life threatening since the dr show the doppler and didn't say so. I mean, he must know better since he is the one who puts stents in those veins.
I wonder mostly about how the blood flow can be restored at this point. If the clot has totally blocked the drainage it can't be left untreated.
Hopefully Peaches will enlight us when she knows more.
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Postby drsclafani » Fri Oct 01, 2010 5:14 am

costumenastional wrote:I don't know if the situation is life threatening since the dr show the doppler and didn't say so. I mean, he must know better since he is the one who puts stents in those veins.
I wonder mostly about how the blood flow can be restored at this point. If the clot has totally blocked the drainage it can't be left untreated.
Hopefully Peaches will enlight us when she knows more.


the more i hear of such problems, and I guess i receive lots of private inquiries that color my opinion, the more unlikely i am to put in stents at all when i resume treatments
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Postby scorpion » Fri Oct 01, 2010 5:35 am

:evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil:
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Postby costumenastional » Fri Oct 01, 2010 5:39 am

drsclafani wrote:the more i hear of such problems, and I guess i receive lots of private inquiries that color my opinion, the more unlikely i am to put in stents at all when i resume treatments


i don't think anyone can argue with that at this point. tough luck for patients whose veins won't stay open with ballooning though..

i for one would have taken the risk if dr Petrov had told me that a stent was needed.
Last edited by costumenastional on Fri Oct 01, 2010 6:09 am, edited 1 time in total.
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Postby Donnchadh » Fri Oct 01, 2010 5:48 am

Maybe, just maybe, the new biodegradable stents being trialed in Europe right now might be an viable option in the future. Even under the best of circumstances, they are years away from approval-and it's important to note they were designed (and being tested) for use in arteries. As we know now, veins are different beasties from arteries, so this particular design might not be applicable for CCSVI cases.

Also, after reading numerous patient experiences here two trends seem to be emerging. First Dr. Zamboni's finding that a majority of ballooned patients re-stenosis seems to be confirmed. And that some of the patients who undergo a second procedure seem to have better luck maintaining an opened vein. Why does it take two tries? Or would a more aggressive ballooning work better on the first go?

So many questions! This is not an established procedure yet....it seems that each venous disorder is unique.

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Waiting

Postby Peaches1 » Fri Oct 01, 2010 7:12 am

I am waiting for the doc to call this am after he looks at my doppler film
After ready other posts re: clots, I am going to question him again,
I need stronger blood thinning meds, clot busters, etc.

And I have read that some get a angio again. Don't know why he is not wanting to go ahead and do another angio.
Yeap, I don't want to be back at square one with this
I will keep all updated
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LDN, Prokarin
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Re: Waiting

Postby scorpion » Fri Oct 01, 2010 7:21 am

Peaches1 wrote:I am waiting for the doc to call this am after he looks at my doppler film
After ready other posts re: clots, I am going to question him again,
I need stronger blood thinning meds, clot busters, etc.

And I have read that some get a angio again. Don't know why he is not wanting to go ahead and do another angio.
Yeap, I don't want to be back at square one with this
I will keep all updated


Sending positive thoughts your way!
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