At the Hamilton Conference, the doctors from around the globe who are following Dr. Haacke's MRV protocol find CCSVI in 95% of all patients with MS.
See Avis Favaro's report from CTV-
link
Hamilton Conference Feb 7 .......Updated (Feb 22)
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cheerleader
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Great, cheerleader! Thanks for that video link. And tomorrow we'll have the 500 first doppler results of Buffalo?! Zivadinov was so positive on that video that those can only be convincing! Also that they already announce to set up an established doppler facility, would say, tells it all! I think the ball really gets rolling!cheerleader wrote:At the Hamilton Conference, the doctors from around the globe who are following Dr. Haacke's MRV protocol find CCSVI in 95% of all patients with MS.
See Avis Favaro's report from CTV-
link
i am not that worried about ohip, i have a feeling they will be backtracking pretty soon. maybe not on treating, but for sure on testing, i mean jeeeezz.
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Arcee
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I also had the good fortune to be in attendance at the workshop. I think EdW has captured a lot of the research details quite nicely so I will add some comments on the scene there as well as put things in perspective for long time, detailed TIMS readers.
- The voices of Canadian patients really affected this event. Some stopped by to, eloquently, politely, movingly, show their support. The hospital received over 20,000 (maybe even 22,000) inquiries. I overheard some very skeptical local neuros saying, before the talk, that they didn't really believe the theory, but their patients had inundated their office so they were in attendance. Also, I heard one US doctor say he was there because a Canadian patient had informed him.
- And the US doctors were there too. A neurosurgeon asked a question. Interventional radiologists did as well. The feeling was that more are getting involved.
- I spoke with several of the speakers and a reporter and they all said the same thing: they are consumed with this topic. The energy and interest is high.
- It has only been about five months since the Bologna Conference, and they have made so much progress, they are learning so much. They ask the same questions we have here: azygus vs. jugular differences, when stents and when angioplasty, when doppler and when MRV. Overall, much of the research that was presented was based on papers many of us here have read.
- Random comment: I also heard one skeptical local doctor say that they have seen thousands and thousands of jugular veins and they have never noticed anything, but then again they have not been looking for it.
- Those skeptical local neuros I heard also wondered why there was so little information about CCSVI in the US media.
- There were a couple of moments when the crowd reacted. (In my notes, I noted audible murmurs.) The topics being discussed in those instances were: when Dr. Salvi noted that all the instances of relapse were associated with restenosis, and when Dr. Al-Omari described improvements patients experienced (I believe swallowing was the specific example). Dr. Al-Omari also asked: maybe MS is really multiple stenoses? And he got some laughs and the host said that it was a very provocative question indeed.
I do have a lot of other notes that I can use to try to answer particular questions if you have them.
- The voices of Canadian patients really affected this event. Some stopped by to, eloquently, politely, movingly, show their support. The hospital received over 20,000 (maybe even 22,000) inquiries. I overheard some very skeptical local neuros saying, before the talk, that they didn't really believe the theory, but their patients had inundated their office so they were in attendance. Also, I heard one US doctor say he was there because a Canadian patient had informed him.
- And the US doctors were there too. A neurosurgeon asked a question. Interventional radiologists did as well. The feeling was that more are getting involved.
- I spoke with several of the speakers and a reporter and they all said the same thing: they are consumed with this topic. The energy and interest is high.
- It has only been about five months since the Bologna Conference, and they have made so much progress, they are learning so much. They ask the same questions we have here: azygus vs. jugular differences, when stents and when angioplasty, when doppler and when MRV. Overall, much of the research that was presented was based on papers many of us here have read.
- Random comment: I also heard one skeptical local doctor say that they have seen thousands and thousands of jugular veins and they have never noticed anything, but then again they have not been looking for it.
- Those skeptical local neuros I heard also wondered why there was so little information about CCSVI in the US media.
- There were a couple of moments when the crowd reacted. (In my notes, I noted audible murmurs.) The topics being discussed in those instances were: when Dr. Salvi noted that all the instances of relapse were associated with restenosis, and when Dr. Al-Omari described improvements patients experienced (I believe swallowing was the specific example). Dr. Al-Omari also asked: maybe MS is really multiple stenoses? And he got some laughs and the host said that it was a very provocative question indeed.
I do have a lot of other notes that I can use to try to answer particular questions if you have them.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Arcee
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I think the early posts about the Jordan study were accurate -- that they had 20 controls and 20 patients. I don't have any other information as to whether or not they have treated outside of the study...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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thornyrose76
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Sorry, I'm an idiot with these forumsArcee wrote:I also had the good fortune to be in attendance at the workshop. I think EdW has captured a lot of the research details quite nicely so I will add some comments on the scene there as well as put things in perspective for long time, detailed TIMS readers.
- The voices of Canadian patients really affected this event. Some stopped by to, eloquently, politely, movingly, show their support. The hospital received over 20,000 (maybe even 22,000) inquiries. I overheard some very skeptical local neuros saying, before the talk, that they didn't really believe the theory, but their patients had inundated their office so they were in attendance. Also, I heard one US doctor say he was there because a Canadian patient had informed him.
- And the US doctors were there too. A neurosurgeon asked a question. Interventional radiologists did as well. The feeling was that more are getting involved.
- I spoke with several of the speakers and a reporter and they all said the same thing: they are consumed with this topic. The energy and interest is high.
- It has only been about five months since the Bologna Conference, and they have made so much progress, they are learning so much. They ask the same questions we have here: azygus vs. jugular differences, when stents and when angioplasty, when doppler and when MRV. Overall, much of the research that was presented was based on papers many of us here have read.
- Random comment: I also heard one skeptical local doctor say that they have seen thousands and thousands of jugular veins and they have never noticed anything, but then again they have not been looking for it.
- Those skeptical local neuros I heard also wondered why there was so little information about CCSVI in the US media.
- There were a couple of moments when the crowd reacted. (In my notes, I noted audible murmurs.) The topics being discussed in those instances were: when Dr. Salvi noted that all the instances of relapse were associated with restenosis, and when Dr. Al-Omari described improvements patients experienced (I believe swallowing was the specific example). Dr. Al-Omari also asked: maybe MS is really multiple stenoses? And he got some laughs and the host said that it was a very provocative question indeed.
I do have a lot of other notes that I can use to try to answer particular questions if you have them.
Could you provide some specific details in regards to patients whom might have improved,, how did they improve, did they have physio after the Liberation Treatment, are they at present still having physio, etc?
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berriesarenice
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Arcee
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Thornyrose, there probably is more information on this site about those questions than was presentedCould you provide some specific details in regards to patients whom might have improved,, how did they improve, did they have physio after the Liberation Treatment, are they at present still having physio, etc?
That kind of patient outcome data was only a small portion of what was discussed, and much of that was a presentation what has been published and is in the research sticky here.diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Arcee
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I got a PM about the workshop, about the MRI/V and Doppler issue in particular, so I re-checked my notes and spoke with Dr. Haacke and thought I would post some comments.
Dr. Haacke’s assessment: "The current CCSVI MRI protocol includes both MRV and flow quantification. MR flow quantification is as good as and perhaps even better than ultrasound. With these two features together MR can catch a lot of the abnormal vessels. Further, MRI can create full 3D vascular information from the aortic arch to the top of the brain. Doppler is also more operator dependent than the MRI. But ultrasound can image the valves and septum in the veins which MRI can not do. So together they make a good combination with flow acting as a common link between them. So both ultrasound and MRI are very important."
Related, as I noted in the Buffalo results thread, there's a learning curve with ultrasound so that is one reason why the percentages of MS patients with CCSVI have increased over time when one center has done multiple studies.
And one other thing about the MRI to keep in mind: it's a critical assessment tool, especially from the neurological perspective. We can imagine pre and post intervention MRIs that measure atrophy (and there was a big emphasis at the workshop that this is what really matters), if the iron is removed, and if vein patency been maintained.
www.ms-mri.com has more information on MRI and ultrasound
So, one big takeaway: plenty of work for everyone with all different tools
Dr. Haacke’s assessment: "The current CCSVI MRI protocol includes both MRV and flow quantification. MR flow quantification is as good as and perhaps even better than ultrasound. With these two features together MR can catch a lot of the abnormal vessels. Further, MRI can create full 3D vascular information from the aortic arch to the top of the brain. Doppler is also more operator dependent than the MRI. But ultrasound can image the valves and septum in the veins which MRI can not do. So together they make a good combination with flow acting as a common link between them. So both ultrasound and MRI are very important."
Related, as I noted in the Buffalo results thread, there's a learning curve with ultrasound so that is one reason why the percentages of MS patients with CCSVI have increased over time when one center has done multiple studies.
And one other thing about the MRI to keep in mind: it's a critical assessment tool, especially from the neurological perspective. We can imagine pre and post intervention MRIs that measure atrophy (and there was a big emphasis at the workshop that this is what really matters), if the iron is removed, and if vein patency been maintained.
www.ms-mri.com has more information on MRI and ultrasound
So, one big takeaway: plenty of work for everyone with all different tools
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
