This Is MS Multiple Sclerosis Knowledge & Support Community

Two patients posting on Facebook today about their jugular being clotted off. The IRs try to get the wire through but can't. (No mention of a rendezvous procedure, perhaps that would be an option.)

I am sad that anyone suffers this. These veins are important.

I hope there will be progress made in 2011 to determine the best anticoagulant regimen.

Cece wrote:Two patients posting on Facebook today about their jugular being clotted off. The IRs try to get the wire through but can't. (No mention of a rendezvous procedure, perhaps that would be an option.)

I am sad that anyone suffers this. These veins are important.

I hope there will be progress made in 2011 to determine the best anticoagulant regimen.

Cece, my left jug is still clotted off, has been for 6 months now. It seems to be more and more reports of this. Some docs still don't prescribe anticoagulants post-angio.

Having had several treatments now, I don't think there is enough 'after sales service' in this procedure. People are regressing at an alarming rate. Someone needs to get completely across why this is happening. Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly. Moreover, we need to do something about it. Already one person has died as a result of inadequate followup. Personally, I'd like to know how the early Italian patients are doing. Some of the early Polish patients are not travelling well and Kuwait has been quiet.

Just curious, are these clots do to stents or are we seeing clots forming just in general???

Brainteaser wrote:Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly.

Don't forget elastic recoil, brainteaser, I think that's the majority of the cases. (Due to inadequate dilation in the first place, preventable through the more aggressive ballooning?)

pklittle and LR, it's heart-breaking, I wish there was something the doctors could do.

orion98665 wrote:Just curious, are these clots do to stents or are we seeing clots forming just in general???

Often times, just angioplasty can cause clotting. It is an invasion of sorts on the vein and this is how the body can react.

Cece wrote:

Brainteaser wrote:Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly.

Don't forget elastic recoil, brainteaser, I think that's the majority of the cases. (Due to inadequate dilation in the first place, preventable through the more aggressive ballooning?)

pklittle and LR, it's heart-breaking, I wish there was something the doctors could do.

It is a very difficult situation to be in, speaking for myself. Two doctors. One feels the best thing is to do nothing, as he explained that collaterals form and make up for the loss of flow. The second doctor ... well, I don't know what to say...

I personally believe that the level of follow-up to monitor anticipated problems, occuring for whatever the reason, be it elastic recoil, clotting or anything else, is generally quite inadequate. As time goes on, there might be more and more patients who are initially quite exhilerated by the positive short-term results but who become very disappointed and feral if things go sour. We should bear in mind that the adverse effects of something like intimal hyperplasia are said to take up to 12 months after a procedure to show up.

pklittle wrote:It is a very difficult situation to be in, speaking for myself. Two doctors. One feels the best thing is to do nothing, as he explained that collaterals form and make up for the loss of flow. The second doctor ... well, I don't know what to say...

Was your azygous ever treated? With one obstruction (clotted jugular), you can still be ok as long as the other jugular and azygous are cleared and can take the flow.

Someone told me that we are all works-in-progress (referring to the need for repeat venoplasties) although I'd personally feel like more of a work-in-progress if I ever made it in for my first one. (Waiting on my insurance to clear credentialing so I can be treated by Dr. Sclafani...shhhh don't let Holly see me, she will try and reschedule me....)

Brainteaser, yes, I agree with you about the level of follow-up, I hope that continues to change as more doctors become available in more places.

Brainteaser wrote:I personally believe that the level of follow-up to monitor anticipated problems, occuring for whatever the reason, be it elastic recoil, clotting or anything else, is generally quite inadequate. As time goes on, there might be more and more patients who are initially quite exhilerated by the positive short-term results but who become very disappointed and feral if things go sour. We should bear in mind that the adverse effects of something like intimal hyperplasia are said to take up to 12 months after a procedure to show up.

I agree, I agree, I agree....Where were you treated?

The ultrasound device emits
sound waves that loosen the clot,
allowing the clot-busting drugs to
dissolve it faster. The method currently
is used to treat DVT and clots
in other parts of the body.

This was in the ISET newsletter from Wednesday. I had not heard of this before. Not very many people have received thrombolysis as a treatment for clotting, but this would be in addition to thrombolysis.

Cece wrote:

The ultrasound device emits
sound waves that loosen the clot,
allowing the clot-busting drugs to
dissolve it faster. The method currently
is used to treat DVT and clots
in other parts of the body.

This was in the ISET newsletter from Wednesday. I had not heard of this before. Not very many people have received thrombolysis as a treatment for clotting, but this would be in addition to thrombolysis.

But....how safe is it on the Jugulars. I mean so close to the tiny vessels of the brain? This makes me wonder too..

If the ultrasound were potentially damaging, perhaps just aiming it downward rather than upward would help? Most of the CCSVI issues are down at the base of the jugulars, at the bottom of the neck near the clavicle, so that would be further from the brain as well.

Sureaser, I always say "welcome to the forum" when I see someone post their first post, but here's a dilemma, you were here years before me? ;)

Sureaser, hopefully the clots won't swim backwards, with natural blood flow being towards the heart for the jugulars. However, I would be very uneasy trying this as you could end up with pulmanory embolism. Actually I find the whole idea regarding the use of clot-busters scary.

I just ignore mine. Ultrasound in a fortnight though and I'll find out what's really going on..