Please verify your CCSVI testing facility

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

Postby CaptBoo » Wed Mar 09, 2011 11:52 am

However, both of mine took several hours each.
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Postby Cece » Wed Mar 09, 2011 12:27 pm

DrCumming wrote:
jackiejay wrote:my son's doppler ultrasound took at the most 20 minutes.....is that normally the amount of time needed to do this exam?


Jackie, the time it takes to do the study is not that important versus the knowledge and skill of the person doing the exam.

Did they find CCSVI?

I agree about the time, although I think a thorough Zamboni protocol ultrasound is a good idea for follow-up comparisons, particularly for the information it gives about the verts and the epidural veins, to try and infer about the azygous.

For me, I had the Zamboni protocol ultrasound at American Access Care in Brooklyn as well as an ultrasound by Dr. Cumming here in MN a few months earlier. For the Zamboni protocol one, the tech started with the jugular down at the base (J1) and immediately discovered reflux and visualized a bad valve. I'd met the criteria for CCSVI at that point, about 2 minutes or less into the exam. It went on for another hour or thereabout.

With Dr. Cumming, I cannot remember which came first, but there was one jugular which he immediately centered in on the problem and the other in which he had to investigate a bit longer. He had only done a couple CCSVI ultrasounds before mine, this was back in November.

CCSVI was obvious on both of mine.
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Postby jackiejay » Wed Mar 09, 2011 5:45 pm

yes, Dr. Cumming, he was diagnosed with CCSVI...3/5 of the criteria.
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Postby Lanie » Thu Mar 10, 2011 8:26 am

CD wrote:I am not sure if this is true, but I heard it has to be on a the new Siemens Ultrasound Machine with special software, for the CCSVI protocol testing. Is this true?
CD


CD, to obtain the most accurate results using the Zamboni protocol we use an Esaote system that has CCSVI specific software and a special multi-directional probe. We also have special calibrated presets for use in evaluating the veins.

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Postby Lanie » Thu Mar 10, 2011 2:25 pm

civickiller wrote:does anyone know if PI has somebody there trained in the full zamboni protocal? or what clinics do?

Lanie, where are you preforming these test?


Civickiller,

I perform the test at CCSVI-Atlanta.

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Postby Lanie » Thu Mar 10, 2011 2:51 pm

formyruca wrote:Hi Lanie,

What is the current number of pwMS that have met 3 of 5 Zamboni criteria at your facility?

Thanks!


Formyruca,

We have evaluated hundreds of people for CCSVI - approximately 98% of patients meet 2 or more out of the 5 criteria for a positive diagnosis. I don’t have access to the full breakdown of the data.

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Postby Lanie » Thu Mar 10, 2011 2:58 pm

jackiejay wrote:my son's doppler ultrasound took at the most 20 minutes.....is that normally the amount of time needed to do this exam?


Jackiejay,

The Zamboni protocol is approximately 2 hours with the patient in both the supine & seated position. The exam evaluates the full internal jugular, valve, deep cerebral and vertebral veins bilaterally.

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Postby jackiejay » Thu Mar 10, 2011 4:41 pm

Lanie,

He was tested using the Zamboni protocol (seated and supine positions) at the Barrie clinic in Ontario....criteria met for CCSVI..3/5....perhaps they have a speedy way of doing it...

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Postby Lanie » Thu Mar 17, 2011 8:50 am

jackiejay wrote:Lanie,

He was tested using the Zamboni protocol (seated and supine positions) at the Barrie clinic in Ontario....criteria met for CCSVI..3/5....perhaps they have a speedy way of doing it...

Jackie


Jackiejay,

Most of our patients travel a great distance to see us and all of our patients deserve the most accurate Doppler exam. If we did a 20 minute study it would not be enough time to thoroughly evaluate the valves, deep cerebral veins, pathology and anomalies.

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Postby Cece » Thu Mar 17, 2011 9:31 am

Lanie, what are the challenges with measuring the deep cerebral veins? Did it take you a while to become consistent at those? Dr. Sclafani has just mentioned that the consensus between Dr. Zamboni and 47 experts at the ISNVD conference these last few days was that the Zamboni criteria will now be reduced to just four instead of five! They are dropping the deep cerebral veins portion. Will this change what you do at CCSVI Atlanta?
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Postby Lanie » Thu Mar 17, 2011 11:56 am

Cece wrote:Lanie, what are the challenges with measuring the deep cerebral veins? Did it take you a while to become consistent at those? Dr. Sclafani has just mentioned that the consensus between Dr. Zamboni and 47 experts at the ISNVD conference these last few days was that the Zamboni criteria will now be reduced to just four instead of five! They are dropping the deep cerebral veins portion. Will this change what you do at CCSVI Atlanta?


Cece,

We understand the difficulty that Songraphers can have who are not properly trained or do not have the proper equipment to evaluate the deep cerebral veins (DCVs). The BNAC training was valuable plus I had 3 additional weeks of training to become proficient at the complete protocol including evaluating the DCVs. We feel it is still important to evaluate the DCVs to assess for reflux from IJV.

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Postby CCSVI_Atlanta » Sat Mar 19, 2011 8:44 am

Cece wrote:
Hooch wrote:The technician in Barrie told me that she had a way of checking that the azygous was open using the doppler ultrasound. I am a Dr Siskin patient and he couldn't find my azygous but Angela said I did have one and that I had bloodflow through it!

That is something!! They check the vertebral veins (I was told at AAC Brooklyn that I had beautiful verts, during the ultrasound) and if there is reflux in the verts, that indicates there may be reflux in the azygous. It's indirect but at least it's information. For Angela to be able to say that you had an azygous with bloodflow through it, she must have been seeing the verts flowing and they have to be flowing somewhere, which is the azygous...I hope I've got this right.


Azygos cannot be properly evaluated by Doppler. Reflux in the vertebral veins is relatively rare, but problems with the azygos are common. If there are collaterals coming off the vertebrals, then that is often indicative of a problem with the azygos, but the converse is not true. A person can have a problem with the azygos and still not show a problem with the vertebral veins - actually that is often the case.

Although Doppler CCSVI evaluations do not scan the azygos, lumbars, iliacs, renals, etc. it is a very effective screening tool for CCSVI, and an experienced IR will still check the major veins in the chest and lumbar/pelvic areas during the procedure.
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Postby jackiejay » Mon Mar 21, 2011 3:54 pm

although my son's doppler ultrasound was fairly quickly done...one of his qualifying criteria was "abnormal flow in the deep cerebral veins"...
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Postby Lanie » Tue Apr 12, 2011 10:45 am

jackiejay wrote:although my son's doppler ultrasound was fairly quickly done...one of his qualifying criteria was "abnormal flow in the deep cerebral veins"...


20 minutes for CCSVI doppler?! Just doing the deep cerebral veins for reflux takes up to 20 minutes by itself. As a sonographer certified in this exam I want to share my experience so patients know what to expect from their testing facility to get an accurate diagnosis. I am happy for you that yours came back in your favor but some do not and that is most likely because they were not fully evaluated.
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Postby jackiejay » Tue Apr 12, 2011 11:07 am

should I assume that his exam wasn't done properly.....
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