I had my first procedure done last Monday, left jugular and azycos chest vein. I went for second procedure today to have right jugular done. It was discovered that my left jugular had clotted and was showing colatterals for the blood flow. I asked my Doctor last week if he used blood thinners, and his reply was no, just asperin. Unfortunately now I need to go on blood thinners, Lovenox, 2 shots a day for the next 3 months to make sure my right jugular doesn't clot as well as making sure my left jugular doesn't clot even more. The reason he suggested Lovenox is that it doesn't require any blood testing while using it.
My doctor (Mehta) said that he's done 130 procedures and that this situation is very unusual.
I guess my question is, is this the best way to go as far as blood thinners? I already do a shot a day with copaxone.
Procedure done last week, now clotting
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soapdiva884
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Well, first off congrats on your procedure(s)!!! My bf had the procedure with Dr. Sclafani in Nov. and he was put on Arixtra injections x 20 days to prevent clotting. I really can't answer your question. I hope the plan of treatment prevents more clotting from happening. Please let us know how your doing.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
Dr. Cumming uses Lovenox for his patients. Perhaps ask in his thread? This is not the best time, though, with the IRs all off at ISET.
It might be rare to Dr. Mehta, but it's all too common here. Yes, strong blood thinners for long periods seems to be the general response by the doctors when a patient comes down with a clot in the jugular. The blood thinner will not directly break up the clot but will prevent it from worsening, which will give your body time to break it up on its own if it can. Pulmonary embolism can be a complication of clotting, we've had exactly one patient (that I know of) who had a PE after pretty bad post-procedure clotting. If it were me, I'd definitely follow doctor's advice and go with the Lovenox.
Some docs have used coumadin in these circumstances, but you have to have your INR levels tested and MS patients seem to take longer to get their INR levels up to what they need to be (this was noticed by Dr. Dake in his patients). Some docs have used coumadin with a week or two of lovenox, with the plan being to discontinue the lovenox when the coumadin kicks in (as seen in the inr levels).
I am confused, though - did Dr. Mehta attempt to open the clotted jugular? Could he not get the guide wire through? Some docs in these situations have successfully done a rendezvous-procedure, which is to insert the catheter at the top of the neck and approach the clot from that side.
Wishing you all the best. This sort of situation is actually the one where Dr. Mehta's spacing out the procedures by two weeks can catch this sort of thing.
It might be rare to Dr. Mehta, but it's all too common here. Yes, strong blood thinners for long periods seems to be the general response by the doctors when a patient comes down with a clot in the jugular. The blood thinner will not directly break up the clot but will prevent it from worsening, which will give your body time to break it up on its own if it can. Pulmonary embolism can be a complication of clotting, we've had exactly one patient (that I know of) who had a PE after pretty bad post-procedure clotting. If it were me, I'd definitely follow doctor's advice and go with the Lovenox.
Some docs have used coumadin in these circumstances, but you have to have your INR levels tested and MS patients seem to take longer to get their INR levels up to what they need to be (this was noticed by Dr. Dake in his patients). Some docs have used coumadin with a week or two of lovenox, with the plan being to discontinue the lovenox when the coumadin kicks in (as seen in the inr levels).
I am confused, though - did Dr. Mehta attempt to open the clotted jugular? Could he not get the guide wire through? Some docs in these situations have successfully done a rendezvous-procedure, which is to insert the catheter at the top of the neck and approach the clot from that side.
Wishing you all the best. This sort of situation is actually the one where Dr. Mehta's spacing out the procedures by two weeks can catch this sort of thing.
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drsclafani
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Re: Procedure done last week, now clotting
So very sorry for your trouble.davmets2 wrote:I had my first procedure done last Monday, left jugular and azycos chest vein. I went for second procedure today to have right jugular done. It was discovered that my left jugular had clotted and was showing colatterals for the blood flow. I asked my Doctor last week if he used blood thinners, and his reply was no, just asperin. Unfortunately now I need to go on blood thinners, Lovenox, 2 shots a day for the next 3 months to make sure my right jugular doesn't clot as well as making sure my left jugular doesn't clot even more. The reason he suggested Lovenox is that it doesn't require any blood testing while using it.
My doctor (Mehta) said that he's done 130 procedures and that this situation is very unusual.
I guess my question is, is this the best way to go as far as blood thinners? I already do a shot a day with copaxone.
was a stent used?
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blossom
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ccsvi
sorry to hear you had clotting. this is good they caught it quickly and treating it. i hope soon there is a protocol that prevents this from happening to anyone. i hope soon we hear back from you that you have good improvements. rest and heal.
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davmets2
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Dr. Sclafani,
No a stent wasn't used. He mentioned to me as I was laying there that his options were that he may have to stent later on or do some type of bypass procedure around the clot doing surgery at the neck. Just an after thought, but wouldn't it be wise to use a blood thinner in all cases for a period after the procedure as a safety precaution?
Cece wrote:
I am confused, though - did Dr. Mehta attempt to open the clotted jugular? Could he not get the guide wire through? Some docs in these situations have successfully done a rendezvous-procedure, which is to insert the catheter at the top of the neck and approach the clot from that side.
It appeared on video picture he showed me that the guide wire was through the clotted area. I'm pretty sure he tried to open the clotted area as that jugular is sore this morning.
Thanks everyone else for replying and your well wishes.
Don
No a stent wasn't used. He mentioned to me as I was laying there that his options were that he may have to stent later on or do some type of bypass procedure around the clot doing surgery at the neck. Just an after thought, but wouldn't it be wise to use a blood thinner in all cases for a period after the procedure as a safety precaution?
Cece wrote:
I am confused, though - did Dr. Mehta attempt to open the clotted jugular? Could he not get the guide wire through? Some docs in these situations have successfully done a rendezvous-procedure, which is to insert the catheter at the top of the neck and approach the clot from that side.
It appeared on video picture he showed me that the guide wire was through the clotted area. I'm pretty sure he tried to open the clotted area as that jugular is sore this morning.
Thanks everyone else for replying and your well wishes.
Don
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DrCumming
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We always fully anticoagulate during the procedure and check using a test called ACT. We use various regimens of post procedure anticoagulation.
I spoke with another IR here. They had one case of jugular thrombosis which opened after a month of lovenox.
What was the timing of your procedure until thrombus was found?
I spoke with another IR here. They had one case of jugular thrombosis which opened after a month of lovenox.
What was the timing of your procedure until thrombus was found?
Last edited by DrCumming on Tue Jan 18, 2011 11:12 am, edited 1 time in total.
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davmets2
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DrCumming,
The clotting was discovered during the second procedure , so it was discovered 7 days after the first procedure. I'm sure I anticoagulated during the procedure, heperin I think? I was also taking an 81 mg aspirin 5 days before the first procedure and am still taking.
Unfortunately I won't be able to stay on Lovenox, as I had a bad reaction to it after the first injection yesterday. I ended up in the emergency room with rashes all over my chest, stomach, arms and back, along with overheating of these areas and a 100 degree temperature. I hope there's a blood thinner out there that works just as well. I'm still waiting this morning to find out what Dr. Mehta will be putting me on.
The clotting was discovered during the second procedure , so it was discovered 7 days after the first procedure. I'm sure I anticoagulated during the procedure, heperin I think? I was also taking an 81 mg aspirin 5 days before the first procedure and am still taking.
Unfortunately I won't be able to stay on Lovenox, as I had a bad reaction to it after the first injection yesterday. I ended up in the emergency room with rashes all over my chest, stomach, arms and back, along with overheating of these areas and a 100 degree temperature. I hope there's a blood thinner out there that works just as well. I'm still waiting this morning to find out what Dr. Mehta will be putting me on.
Davmets, keep us posted on this, I want this to turn out well for you.
I know someone else who was on Lovenox who had a bad reaction who was then put on Plavix, but this was all just after a typical angioplasty, not as treatment for an existing thrombosis as in your case. Plavix is an antiplatelet not an anticoagulant. Let us know what Dr. Mehta chooses. Coumadin and Arixtra are the only other anticoagulants I am familiar with here.
Please consider getting a second opinion on if the clot can be broken up using interventional radiology techniques before agreeing to a stent or a jugular bypass (using the saphenous vein from the leg). Dr. Mehta is a vascular surgeon, he is very valuable to the ccsvi community in that regard, but he has not to my knowledge done a bypass graft as treatment for CCSVI yet, so this is experimental.
I know someone else who was on Lovenox who had a bad reaction who was then put on Plavix, but this was all just after a typical angioplasty, not as treatment for an existing thrombosis as in your case. Plavix is an antiplatelet not an anticoagulant. Let us know what Dr. Mehta chooses. Coumadin and Arixtra are the only other anticoagulants I am familiar with here.
I am so much in agreement with this, I try not to overdo my advocacy for anticoagulants here, because it's not all been determined and there could be a different set of risks with the anticoagulation itself. Forethought is better than afterthoughts...we just see too many clotting stories here.Just an after thought, but wouldn't it be wise to use a blood thinner in all cases for a period after the procedure as a safety precaution?
Please consider getting a second opinion on if the clot can be broken up using interventional radiology techniques before agreeing to a stent or a jugular bypass (using the saphenous vein from the leg). Dr. Mehta is a vascular surgeon, he is very valuable to the ccsvi community in that regard, but he has not to my knowledge done a bypass graft as treatment for CCSVI yet, so this is experimental.
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fogdweller
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Here is what drsclafani said about recanalization:
http://www.thisisms.com/ftopicp-144699.html#144699
http://www.thisisms.com/ftopicp-144699.html#144699
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fogdweller
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Quote:
(Dr. Sclafani, does a clot becomes permanent in three months? I'm not actually sure about that.)
"clots become permanent fairly early. they can partially dissolve and contract leaving an irregular lumen where blood can flow, we call this recanalization.but many times the vessel just shrivels up and dies."
Very worriesom, if that is what happens to the jugulars. How repair this/ bypass surgery on the jugular?
(Dr. Sclafani, does a clot becomes permanent in three months? I'm not actually sure about that.)
"clots become permanent fairly early. they can partially dissolve and contract leaving an irregular lumen where blood can flow, we call this recanalization.but many times the vessel just shrivels up and dies."
Very worriesom, if that is what happens to the jugulars. How repair this/ bypass surgery on the jugular?