Aa
CCSVI Study at False Cr Surgical, Vancouver, BC
I went in on Saturday and got scaned for the CCSVI study.
The MRV was done in a 3T MRI machine. It took about 1 1/4 hours to complete the scan, with dye being injected through intervenous for the last few minutes.
The scan felt a little tighter than other MRI's I've had, due to a piece of hardware that clips on about an inch from your face, and something they place on your chest which kind of holds your chin still.
Even though I kept drifting off to sleep I managed to hold still enough for the tech to get clear shots for most of the scan, he only had to repeat a 3 minute sequence.
The study will be completed and released around mid January after which the 200 of us (100 with MS, 100 without MS) will get our individual reports.
I'm very pleased to have participated in this study. It'll be interesting to see what they determine, and valuable to know whether or not I have CCSVI.
Mike
The MRV was done in a 3T MRI machine. It took about 1 1/4 hours to complete the scan, with dye being injected through intervenous for the last few minutes.
The scan felt a little tighter than other MRI's I've had, due to a piece of hardware that clips on about an inch from your face, and something they place on your chest which kind of holds your chin still.
Even though I kept drifting off to sleep I managed to hold still enough for the tech to get clear shots for most of the scan, he only had to repeat a 3 minute sequence.
The study will be completed and released around mid January after which the 200 of us (100 with MS, 100 without MS) will get our individual reports.
I'm very pleased to have participated in this study. It'll be interesting to see what they determine, and valuable to know whether or not I have CCSVI.
Mike
I just wanted to follow up on this a little bit in case anyone is interested. The reason I asked about the MRI/MRV is that some of the researchers are not finding it very effective at predicting CCSVI, The MRI only looks at anatomy and structure so it shows the shape of the veins, but CCSVI is really about blood flow, i.e., slowing of the flow and reflux. Some people, like Dr. Haacke, are trying to compensate for this by using methods that quantitatively analyze blood flow. There still seem to be a lot of unknowns as far as how to test for CCSVI.
From Wheelchair Kamikaze:
"One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated (abstract at http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=115246&XNSPRACHE_ID=2&XNKONGRESS_ID=126&XNMASKEN_ID=900). Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins."
(http://www.wheelchairkamikaze.com/2010/10/comprehensive-roundup-of-ccsvi-info.html)
"Among [the Buffalo researchers'] findings presented here are the following:
"The researchers compared Doppler sonography and 2 magnetic resonance venography (MRV) techniques to the gold standard, catheter venography, in 10 subjects with MS and 10 healthy controls. They found 'much better specificity and positive predictive value of Doppler to detect venous anomalies with respect to MRV,' Dr. Zivadinov noted. 'Our conclusion is Doppler is a better noninvasive tool than MRV.'
"They suspect that power may be a key factor in explaining divergent findings from different data sets, he noted. In a previous report from the large Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, presented at the American Academy of Neurology meeting in April and now in press, 56% of MS patients were found to have CCSVI vs 22% of controls, a statistically significant difference.Robert Zivandinov from Buffalo says."
(http://www.medscape.com/viewarticle/732683 summary of CCSVI activity at ECTRIMS conference; I think you might need a free user account for this)
So many questions. I look forward to hearing about the study results.
sho
From Wheelchair Kamikaze:
"One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated (abstract at http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=115246&XNSPRACHE_ID=2&XNKONGRESS_ID=126&XNMASKEN_ID=900). Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins."
(http://www.wheelchairkamikaze.com/2010/10/comprehensive-roundup-of-ccsvi-info.html)
"Among [the Buffalo researchers'] findings presented here are the following:
"The researchers compared Doppler sonography and 2 magnetic resonance venography (MRV) techniques to the gold standard, catheter venography, in 10 subjects with MS and 10 healthy controls. They found 'much better specificity and positive predictive value of Doppler to detect venous anomalies with respect to MRV,' Dr. Zivadinov noted. 'Our conclusion is Doppler is a better noninvasive tool than MRV.'
"They suspect that power may be a key factor in explaining divergent findings from different data sets, he noted. In a previous report from the large Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, presented at the American Academy of Neurology meeting in April and now in press, 56% of MS patients were found to have CCSVI vs 22% of controls, a statistically significant difference.Robert Zivandinov from Buffalo says."
(http://www.medscape.com/viewarticle/732683 summary of CCSVI activity at ECTRIMS conference; I think you might need a free user account for this)
So many questions. I look forward to hearing about the study results.
sho
Thanks everyone!
I'm really looking forward to the results too! I will post as soon as I hear anything.
Sho, sorry, I don't know what the MRI protocol was they used. The only protocol metioned on my consent papers is: V1
WIRB Protocol #20101392
The investigator is Dr G. Keith Chambers. The sub-investigators are Dr Mark Goodley and Dr Tim Meakin.
I do know False Creek Healthcare Centre was offerring scanning services and was gearing up to offer the operation before the Canadian health system shut them down.
Bob, I read PatienX's post. I don't know what to expect, but it's cool to be in this study even if I'm not convinced CCSVI is strictly an MS issue.
However the study goes, I'm going to find out if I have CCSVI or not, and I honestly don't know what I want the answer to be.
Mike
I'm really looking forward to the results too! I will post as soon as I hear anything.
Sho, sorry, I don't know what the MRI protocol was they used. The only protocol metioned on my consent papers is: V1
WIRB Protocol #20101392
The investigator is Dr G. Keith Chambers. The sub-investigators are Dr Mark Goodley and Dr Tim Meakin.
I do know False Creek Healthcare Centre was offerring scanning services and was gearing up to offer the operation before the Canadian health system shut them down.
Bob, I read PatienX's post. I don't know what to expect, but it's cool to be in this study even if I'm not convinced CCSVI is strictly an MS issue.
However the study goes, I'm going to find out if I have CCSVI or not, and I honestly don't know what I want the answer to be.
Mike
PatientX posted this as a response to another post: (I'm just reposting it here)
"I don't think BNAC has officially published any of their studies, but they did present them at ECTRIMS:
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4057
(You have to scroll down the page to see the summaries).
It looks like they have undertaken a number of studies, but the large investigational study of 500 people did not find (anywhere near close) CCSVI in 100% of people. Depending on how the data is grouped, the occurrence was about 56-62% in MS patients, and 25% in controls. Dr. Zivadinov's presentation to the NMSS can be found here:
http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/index.aspx
(look in the green box on the right-hand side - there's a link to the transcript). "
"I don't think BNAC has officially published any of their studies, but they did present them at ECTRIMS:
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4057
(You have to scroll down the page to see the summaries).
It looks like they have undertaken a number of studies, but the large investigational study of 500 people did not find (anywhere near close) CCSVI in 100% of people. Depending on how the data is grouped, the occurrence was about 56-62% in MS patients, and 25% in controls. Dr. Zivadinov's presentation to the NMSS can be found here:
http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/index.aspx
(look in the green box on the right-hand side - there's a link to the transcript). "
Glad you had the opportunity and looking forward to hearing about the results.
Do you know what sort of MRI protocol they're using? Are they using Dr. Haacke's (http://www.ms-mri.com/potential.php) or something else? I have also read that the Buffalo people were not finding MRV very accurate so I suppose you could end up with no conclusions.
sho
Do you know what sort of MRI protocol they're using? Are they using Dr. Haacke's (http://www.ms-mri.com/potential.php) or something else? I have also read that the Buffalo people were not finding MRV very accurate so I suppose you could end up with no conclusions.
sho
Hey Mike! Can't wait to hear the results of this! I am glad you got the opportunity to check this out and will be watching for your post with a few answers maybe???
Rena
Rena
I'm looking forward to the results... it's great that you got into this study. We need more information on this and I'm happy they are testing people with and without MS..
thanks for doing this and let us know the results when you get them.
take care
wobbly
thanks for doing this and let us know the results when you get them.
take care
wobbly
I'm interested to learn if you (and the 99 others) have the insufficiency too. I'm glad you were able to participate and will get your report so soon!
Good job, Mike.
-Shell
Good job, Mike.
-Shell
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