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PostPosted: Thu Oct 28, 2010 2:16 pm 
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I am having a followup ultrasound locally tomorrow. I am going to assume that the technician does not know how to check for CCSVI. Where is something I could print off and take with me to highlight what needs to be looked for and how to do it?


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PostPosted: Thu Oct 28, 2010 4:31 pm 
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PostPosted: Thu Oct 28, 2010 7:19 pm 
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try this:
http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf

It's from a link on Sammy Jo's website. "Dr. Simka & Zamboni's doppler protocol, requires specialized technician training."

Good luck tomorrow.


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PostPosted: Thu Oct 28, 2010 8:24 pm 
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Thanks Cece


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PostPosted: Fri Oct 29, 2010 11:32 am 
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Hi Pklittle,

Here are three journal articles that I think would be helpful, but I'd try to get them to the technician well in advance of the procedure if possible because this seems to involve very specific complex protocals, diffent from standard procedures.

It might even be worth rescheduling your procedure for a later date if the technician doesn't have time to read through the articles before your testing appointment. People without hands on training, let alone people who haven't even read up about the specific Zamboni doppler protocols, seem to have a very hard time finding CCSVI.

Here are links to the three journal articles. They all touch on different aspects of the techniques used to find CCSVI with doppler ultrasound. I believe they are all Zamboni articles:

"Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis"

http://jnnp.bmj.com/content/80/4/392.full.html

"The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis"

http://www.fondazionehilarescere.org/pd ... 4-ANGY.pdf

"The value of cerebral Doppler venous haemodynamics in the assessment of
multiple sclerosis"

http://www.direct-ms.org/pdf/CCSVI/Zamb ... oppler.pdf

Also, here are two excerpts from Dr. Sclafani's thread on ThisIsMS where he describes the Doppler Ultrasound protocols:

Quote:
drsclafani wrote:
That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.

Erica, the PhD who works with Paolo, is phenomenal. She is very experienced at finding the veins and making pictures that are clear, unquestioned and sensible.

She starts with the right side of the neck in the lying down position. She does the doppler of the jugular vein in three areas J1 near the clavicle, J2 near the thyroid, and J 3 above the carotid bifurcation. She looks to see the direction of flow in each area. she images transversely. This shows the carotid and the jugular simultaneously. The color is supposed to be red and blue.....one going toward (IJ vein) and one going away (carotid) from the heart. Showing the two vessels together makes it very clear that they go in opposite directions if normal. Patients have sent me many images where the vein is seen in profile, but alone. can’t figure out flow direction like that.

Ok. after looking at the IJV at the three areas, she looks for the vertebral vein and artery. Again, the two vessels are imaged together and the colors should be opposite.

Great, then she has the patient take a big breath which allows the veins to distend. She measures the cross sectional area of the jugular in its largest dimension.

Then she does a transcranial doppler looking for the deep cerebral veins. (this is the part I find the most difficult) She is looking for reversal of flow. That is always abnormal.

Finally she puts the B-mode on and looks at the anatomy, looking for webs, stenoses, valves, etc

THEN She does everything again, in the upright position.

THEN, she does everything on the left side in just that order.

This study is quite challenging to learn. My colleague Dan Zinn finally got it, just by watching a few cases. It is not necessarily the most difficult but it certainly is quite specific and doing it wrong is going to lead to failures

As I was saying, I have reviewed a lot of studies done around the world. For the most part, they suck. When you get half the views, or the wrong maneuvers, one is left with the distinct impression that you have no idea what it all means.

So it is clear that we need to create a standard. That standard needs to be specific, reproducible and simple. By the time I learn this one, Paolo may have perfected a US test that is easier to do with similar reliability.


And one more excerpt from Dr Sclafani’s thread, it includes much of the information above with some additional information plus diagnostic criteria:

Quote:
1. Transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. Measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.

DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC


I hope this information is helpful. I am not a medical professional, just a person with MS. I spoke with a local ultrasound tech who said he had tried testing for CCSVI on four people with MS and found it in none.

He also had not read up on the special protocals, feeling his extensive training as an ultrasound tech should be enough. He was convinced by his own experience that CCSVI doesn't exist. This caused me to compile the above information, which due to fatigue I have not managed to get to him yet. :cry:

Mary Ann

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PostPosted: Fri Oct 29, 2010 12:03 pm 
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The woman who tested me at Dr. Macdonald's in September used a very very similar set of steps. It was not Angela; others in his lab have traveled to Italy for training as well. This gives me great reassurance.

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PostPosted: Fri Oct 29, 2010 12:06 pm 
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Based on my conversations with Dr. McDonald and his staff, it is my understanding that training--not just reading procedures--is absolutely critical to getting an accurate CCSVI test. Having the proper equipment is also imperative.


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