This Is MS Multiple Sclerosis Community: Knowledge & Support

fogdweller, I know, it's very worrisome. If it is a small clot and not totally occluded, an IR can get a guidewire past and that should be sufficient to get a balloon in there and balloon it. Although I am confused why Dr. Mehta did not do this or it was not successful in davmets case. Prior to this I thought the danger was in the cases of total occlusion, not partial occlusion.

things that can be done include
* thrombolysis (drugs placed in the vein directly by the clot but needs caution; thrombolysis led to internal bleeding in the fatality in Costa Rica);
* going at the clot from the other side through a rendezvous procedure that means putting the catheter in through an insertion in the neck above the place where the clot is;
* ballooning at the site of the clot to open it back up again (but could this free the clot and could it become a pulmonary embolism?)
* not doing a repeat procedure but putting the patient on strong anticoagulants (coumadin or lovenox) so that the clot does not worsen (because without anticoagulation the presence of a clot will encourage further clotting as the bloodstream hits against the clot) and the body gets a chance to recanalize on its own
* Did I miss anything or get anything wrong?

Fogdweller, you might not have a clot. An ultrasound doppler would tell for sure.

We don't know how high the rate of clotting is because so many patients are getting this done in faraway cities with no follow-up. Clotting can be silent, you might not be able to tell by your symptoms that it has happened. And it is more serious when it happens than most people seem to be aware. Jugulars shriveling up and dying...I think if it reaches that stage, only experimental vein grafting (jugular bypass) would be the solution and that would come with its own risk of clotting and intimal hyperplasia where the graft is placed.

Yeah, yo0u'r right it is probably not clotting (thrombosis) just restenosis.

Wishing you the very best of luck with the warfarin sodium and that there will be NO more emergency room visits.

davmets2 - any further improvements or news on your end?

@dvemets2

I had a clot inside a stent that was close to three months old. The IR came at it from the top and looped the guide wire thru, took a long time. Two weeks later, stent beginning to clot again apprx. 85% closed. Went in a fourth time this last Thursday, put a different kind of stent inside the other one (smotther on the inside). Another long procedure, but he could do everything from the femeral vein. I am currently on Lovenox, Coumadin and Plavix, will have INR checked tomorrow morning, hoping for the best.

Good luck with your clot.

This is the route Dr. Mehta is taking. Actually after the second procedure the images already showed significant recanalization of the clotted LJV.

I'm still trying to get my coumadin INR level right. It read 4.89 on Friday, needs to be between 2 and 3. My doctor had me stop the 5 mg tab for two days and than start up again at 2.5 mg last night. Another blood test this morning and than again on Friday.

I did talk to Dr. Mehta on Friday and he said that during the second procedure he aggressively ballooned the clotted LJV again. The images after ballooning showed the guide wire through the clotted area, but it also showed the clot still there along with all the collaterals. He believes that the drainage is better than it was preprocedure. In his opinion he doesn't think that another procedure is necessary at this time. Stay on the coumadin and do a follow up ultrasound in 3 months and we'll discuss any other options, if necessary.

I've slowly started to feel better. Hopefully this week will show more improvement.

Don

That sounds like good care, davmets. I am glad you weren't a patient who was back in Canada with few options when this occurred. You're also the first I've heard a patient having the INR levels go too high! It's much more often that they can't get them up to the 2 -3.

All the best and thanks for reporting in.

Don, I am so sorry for all the trouble you are experiencing. I hope you continue to feel better. Be sure to keep an eye on those high INR numbers. Many of us Stanford patients had a hard time with INR monitoring. I know when my numbers got too high, it really made me feel bad.
Take care,
Beth

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Beth - How long did you continue taking comadin? When was it safe to stop?



Don - Interesting to see the different potency of coumadin on each of us. I take 7.5 mg each night and struggle to reach INR 2.0.

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

I had my procedure on Dec. 23rd and had a my follow-up doppler today in Barrie, Ont. The technician found a blood clot in my left jugular. So she called my doctor to put me on blood thiners and bloodwork twice a week. I guess being on Lovenox for 21 days and then baby aspirin after wasn't enough! I don't have a stent and was surprised that I had a clot.

I go back to ger another doppler on Feb. 22nd.

Sue

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Diagnosed in 1986 - was RRMS now SPMS.

Bizzy, I'm glad they caught it! Are you feeling ok?

We've heard before about people clotting while on blood thinners, but at least one or two of the cases turned out to have hypercoaguability. I also think with lack of follow-up some cases are going undiscovered. Yours would be the only case I can think of without hypercoaugability disease where a clot happened on Lovenox. Maybe three weeks will turn out not to be enough time on the anticoagulants. Was it just a valve that was treated in the left jugular? Or something trickier like a hypoplastic jugular?

It sounds like you've gotten good care, though, between the good people at Barrie and your doctor cooperating with blood thinners and blood work.

Wishing you all the best! Thank you for sharing the update, even though it worries me for you and for myself (I go in two weeks)!

Dr. Sclafani mentioned that he had a hard time with my left jugular. In his report he mentions that it was quite difficult to get into the left internal jugular vein. There was multiple areas of abnormal valves and hyperplastic areas. I finally had two areas ballooned. I'm wondering if this explains why I now have a blood clot there.

I'm a bit worried about this blood clot especially after seeing the urgency in getting a hold of my doctor and still having some discomfort in my neck since my procedure. I wonder also if this is why I have not had any major improvements. I don't know much about this and whether blood thinner alone can disolve the blood clot!

Good luck Cece with your procedure, I'm sure I'm just one of the unlucky ones.

Sue

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Diagnosed in 1986 - was RRMS now SPMS.

The blood thinner is to keep the clot from getting worse, while the body tries to dissolve the clot on its own. Don't forget to consult with Dr. Sclafani, if you haven't already. I hate reports of clotting, especially when it happens to friends.

me too

I took comadin for two months. My doctor took me off after two months.

_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.