Please verify your CCSVI testing facility

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

Postby DrCumming » Tue Apr 12, 2011 2:05 pm

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


if they identified 3/5 criteria, then there is enough evidence that CCSVI is present.

with respect to the discussion above and the time and thoroughness of the study, it depends on what you are doing the study for and how it will affect you decsion making.

for me, i do not believe the US study can exclude the presence of CCSVI. so, i primarly use a pre procedure US to evaluate the jugular veins looking for their presence, size, retrograde flow, webs, valve function etc. this study also functions as a great baseline for doing followup. this study can be done in 15-20 minutes and gives me the information i need/want prior to the venogram.

imaging of the DCV's has been dropped from the standard criteria. this is not to say it is not useful. and it may play an important role in identifying venous problems that exist within the cranial vault and be useful to follow intracranial venoplasties if there is role/utility/safety in performing them.
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Postby Lanie » Wed Apr 13, 2011 7:23 am

[quote="jackiejay"]should I assume that his exam wasn't done properly.....[/quote

I can only tell you what the training includes to have a complete evaluation. I can not comment on exams done by another facility not being present or seeing the images. I have heard that 15-20 minute exams are taking place and are most likely not being done according to the complete Zamboni protocol. If trained under the protocol, most of the criteria must be being stripped down to do a study in that short period of time. I feel it is important to speak out to educate the patient community because no one else is. I also feel it is important that whoever does the CCSVI Doppler Ultrasound should follow complete protocol if we are going to build value and strength in a quality diagnosis.
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Postby Lanie » Wed Apr 13, 2011 7:50 am

DrCumming wrote:
jackiejay wrote:should I assume that his exam wasn't done properly.....


if they identified 3/5 criteria, then there is enough evidence that CCSVI is present.

with respect to the discussion above and the time and thoroughness of the study, it depends on what you are doing the study for and how it will affect you decsion making.

for me, i do not believe the US study can exclude the presence of CCSVI. so, i primarly use a pre procedure US to evaluate the jugular veins looking for their presence, size, retrograde flow, webs, valve function etc. this study also functions as a great baseline for doing followup. this study can be done in 15-20 minutes and gives me the information i need/want prior to the venogram.

imaging of the DCV's has been dropped from the standard criteria. this is not to say it is not useful. and it may play an important role in identifying venous problems that exist within the cranial vault and be useful to follow intracranial venoplasties if there is role/utility/safety in performing them.




I'm excited to see you involved with CCSVI. I know there will be some modifications to the ultrasound protocol and expect that to be published in June/July 2011. Until then, CCSVI Atlanta will continue to follow Dr. Zamboni's current protocol.

As you know, the Zamboni protocol includes 5 Criteria. The pre procedure ultrasound you mentioned evaluates only for patency, Criteria 1 (reflux in IJV) and Criteria 3 (b-mode anomalies).

There are 3 criteria remaining: Criteria 2 (DCV reflux), Criteria 4 (blockage) and Criteria 5 (negative delta which is calculated from a full evaluation of Criteria 3).

I feel it is important for patients to understand what the stated protocol includes. IR's that receive our patient studies have commented on the value of having the full study before doing the procedure. If a facility chooses to strip down the protocol to get "basic" information and proceed with the treatment it will not build value in the exam as we move forward in the future. Also, a stripped down exam will not provide adequate information for follow up exams.
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Postby DrCumming » Sat Apr 16, 2011 10:48 am

Lanie,

I agree, it is important for patients to know what they are getting (as per your first post).

There are several recent papers showing negative US findings in patients with MS. This maybe due several factors including not performing the study as per Zamboni's protocol, operator error and inexperience (plus other explanations).

CCSVI is a concept describing impaired venous drainage of the central nervous system. We are attempting to us non invasive (US and MR) and invasive (venography, IVUS, pressure gradients, etc) to identify patients with this disease. All of these modalities have limitiations.

The criteria for US are Zamboni's initial attempt at describing a non invasive method to identify patients with CCSVI. They maybe or may not be good criteria. They have not been well validated. And they will change as we learn more.

It would be worthwhile for your lab to review the last 100 consecutive CCSVI US studies you have performed (both positive and negative) and correlate the findings with the venograms done. That way, you will learn how well your lab does, how well the criteria work in your hands, and the limitations of US in identifying CCSVI.

Just because someone is performing a "complete" study does not mean they are providing the patients with the best information.
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Postby Cece » Sat Apr 16, 2011 11:11 am

I would love to read such a study! Maybe at next year's ISNVD someone will have done this.
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Postby jackiejay » Sat Apr 16, 2011 12:43 pm

probably been asked before but "b mode abnormalities" (or anomalies) normally means some congenital abnormality, especially if noted bilaterally....
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Postby DrCumming » Sat Apr 16, 2011 1:06 pm

jackiejay wrote:probably been asked before but "b mode abnormalities" (or anomalies) normally means some congenital abnormality, especially if noted bilaterally....


b mode means abnormalities seen on gray scale images. in short, with respect to the jugulars, we are looking for webs, stuck valves, clot and other things.

http://en.wikipedia.org/wiki/Medical_ultrasonography
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Postby Lanie » Tue Apr 19, 2011 7:33 am

DrCumming wrote:Lanie,

I agree, it is important for patients to know what they are getting (as per your first post).

There are several recent papers showing negative US findings in patients with MS. This maybe due several factors including not performing the study as per Zamboni's protocol, operator error and inexperience (plus other explanations).

CCSVI is a concept describing impaired venous drainage of the central nervous system. We are attempting to us non invasive (US and MR) and invasive (venography, IVUS, pressure gradients, etc) to identify patients with this disease. All of these modalities have limitiations.

The criteria for US are Zamboni's initial attempt at describing a non invasive method to identify patients with CCSVI. They maybe or may not be good criteria. They have not been well validated. And they will change as we learn more.

It would be worthwhile for your lab to review the last 100 consecutive CCSVI US studies you have performed (both positive and negative) and correlate the findings with the venograms done. That way, you will learn how well your lab does, how well the criteria work in your hands, and the limitations of US in identifying CCSVI.

Just because someone is performing a "complete" study does not mean they are providing the patients with the best information.


Dr. Cumming,

We agree the protocol and evaluation for CCSVI will change as we learn more. Our lab recently started correlating current patient US findings with their venogram (Atlanta IR). We are satisfied that our complete study approach is providing this IR all the information needed for our patients and have found our US correlates to what is found on the venogram.

Lanie
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Postby dlb » Tue Apr 19, 2011 8:41 am

Lanie 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?


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.

Lanie


Jackiejay / Lanie,

This 'time it takes for the DU' issue is a little disconcerting to me, as I was just tested at Barrie by Angie. My time in the examination room was a little longer than 20 minutes, but only b/c my son & I had so many questions for Angie. I can tell you this: Angie has been to Italy twice & she was trained by Dr. Zamboni - from her lips to my ears. For some reason my results have not yet arrived in the mail & they will not disclose the results at the time of the test. They just re-sent them to me yesterday, so my wait continues.... I just wanted to clear up the question about proper training (Zamboni protocol), as Ang was trained by the master. She also explained to me that she cannot see the azygous, but that she had ways of identifying a likely problem with the azygous - wish I had paid more attention now, as she did explain...
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Postby jackiejay » Tue Apr 19, 2011 12:09 pm

Just to clear up any misconceptions, I was not questioning the validity or quality of the procedure that my son received in Barrie....although his technician was not "Angela" I believe they have all been trained by the Zamboni protocol and I am sure that Dr. McDonald would make sure of this......I was just curious to hear about other opinions on diagnostic techniques, etc.........lots to learn....
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Postby dlb » Tue Apr 19, 2011 5:15 pm

jackiejay, I was actually trying to defend the Barrie team, as I know where their training came from, not question their validity/quality. Sorry if you got a different impression.... Definitely lots to learn - especially what my results are! LOL
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Postby Lanie » Wed Apr 20, 2011 1:15 pm

Cleveland Clinic acknowledges the need for standardization in the use of ultrasound doppler to evaluate for CCSVI. Sonographers performing this exam need to be properly trained in this specialty to ensure an accurate diagnosis. We appreciate Cleveland Clinic’s efforts to help bring attention to applying the protocol.

http://www.medpagetoday.com/MeetingCoverage/AAN/25931
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Postby Kara » Thu May 12, 2011 9:37 am

Thanks! The video was very interesting. We can all hope that one day all the testing facilities will be held to the same standard.
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