No improvements, more weakness 6 days post-op --> clots?

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No improvements, more weakness 6 days post-op --> clots?

Postby NotFound » Mon Dec 20, 2010 1:55 pm

Or still recuperation? Blood thinners bringing my energy down?

The fact that you can only tell for sure that there are clots if you "go in" again (venogram) sucks :(
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Postby AlmostClever » Mon Dec 20, 2010 2:44 pm

NotFound,

Pls refresh us on what you had done to which veins. Balloon or stents?

Thx
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby CD » Mon Dec 20, 2010 3:03 pm

An IVUS ([3-D color] Interventional Radiology Ultra-Sound) like the first one you had, if you did have one, will show if you have clots. That's how mine showed up in the jugular.

Yes, the blood thinners do make you very tired. I felt it every time I took a shot or a pill. Also, the veins need to heal, so don't worry. Get an US if you feel you need it.

Did you have any improvements that disappeared? That is a sign of restenosis, not always a clot. JMO
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Postby NotFound » Mon Dec 20, 2010 6:29 pm

AlmostClever wrote:NotFound,

Pls refresh us on what you had done to which veins. Balloon or stents?

Thx


I had a left IJV ballooned and my azygous stented.
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Postby NotFound » Mon Dec 20, 2010 6:35 pm

CD wrote:An IVUS ([3-D color] Interventional Radiology Ultra-Sound) like the first one you had, if you did have one, will show if you have clots.

They did not do the ultrasound on me (or any tests for that matter) because I brought the test results from Poland with me.

CD wrote:Yes, the blood thinners do make you very tired. I felt it every time I took a shot or a pill.


Whew, because I thought my tiredness when on blood thinners after Poland was due to jet lag, but I did feel very tired then too.

CD wrote:Also, the veins need to heal, so don't worry.


Thanks! I logically know it is the case, but still "panic" :lol:


CD wrote: Get an US if you feel you need it.
See, Dr. Harris said that a US would be useless to detect clots :(

CD wrote:Did you have any improvements that disappeared? That is a sign of restenosis, not always a clot. JMO


No, no improvements to speak of.
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Postby Cece » Mon Dec 20, 2010 7:15 pm

CD wrote:An IVUS ([3-D color] Interventional Radiology Ultra-Sound) like the first one you had, if you did have one, will show if you have clots.

Some confusion: an IVUS is an intravascular ultrasound, it goes on the catheter into the veins to take images from the inside of the vein. The external ultrasound against the neck is simply a doppler ultrasound.
See, Dr. Harris said that a US would be useless to detect clots :(

The ultrasound shows the flow; if a clot in the jugular is blocking the flow, it will show.

However you had a stent in the azygous; I don't think you can tell easily if the azygous clots without going in again, but a Haacke protocol MRV will give you flow data on the azygous or a full five criteria Zamboni doppler might indicate flow abnormalities traceable to the azygous.
CD wrote:Did you have any improvements that disappeared? That is a sign of restenosis, not always a clot. JMO

No, no improvements to speak of.

Everyone's case is different, but I remember pklittle being told for a long time that she didn't need to be seen because she didn't have any improvements and therefore didn't lose any improvements, but in her case it turned out to be a clot, which was lousy bad luck.

I agree with CD, if you are worried, an US is cheap and easy and gives some info to go on.
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Postby CD » Mon Dec 20, 2010 9:06 pm

Sorry, yes you're correct Cece. I heard Dr Sclafani mention this at the July Symposium, and thought is was the outside US one, not the inside one. My mistake. I'll blame the pain drugs.
http://www.youtube.com/watch?v=FXRjXzOl ... re=related

FYI: In the UK:
"They have been trialing the use of intravenous ultrasound (IVUS) in CCSVI treatment to see the lesions better and assess the completeness of the treatment.

IVUS is a state of the art imaging technology which uses a miniature ultrasound probe and gives a 3D image from within the vein. This not only magnifies the imaging of the CCSVI lesions but also allows direct examination of the internal jugular valves."

The IVUS probes are expensive and unfortunately are for single use only. This is from the Edinburgh Clinic. Costs will be rising there since they use them routinely.

http://us1.campaign-archive.com/?u=646d ... 5b033&id...
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Postby drsclafani » Tue Dec 21, 2010 4:59 pm

CD wrote:Sorry, yes you're correct Cece. I heard Dr Sclafani mention this at the July Symposium, and thought is was the outside US one, not the inside one. My mistake. I'll blame the pain drugs.
http://www.youtube.com/watch?v=FXRjXzOl ... re=related

FYI: In the UK:
"They have been trialing the use of intravenous ultrasound (IVUS) in CCSVI treatment to see the lesions better and assess the completeness of the treatment.

IVUS is a state of the art imaging technology which uses a miniature ultrasound probe and gives a 3D image from within the vein. This not only magnifies the imaging of the CCSVI lesions but also allows direct examination of the internal jugular valves."

The IVUS probes are expensive and unfortunately are for single use only. This is from the Edinburgh Clinic. Costs will be rising there since they use them routinely.

http://us1.campaign-archive.com/?u=646d ... 5b033&id...


in the US, insurers will not reimburse for the IVUS....but it is the right thing to do
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ccsvi

Postby blossom » Wed Dec 22, 2010 1:17 am

has anyone gotten this testing in the usa and can quote what they had to pay?
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