Search found 338 matches

by Arcee
Mon Feb 22, 2010 10:42 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stanford Relapses?
Replies: 39
Views: 9416

7 months out for me and no relapse. My symptoms have nearly totally disipated as well. Still early to know for sure, but really, really good so far!
by Arcee
Fri Feb 12, 2010 4:14 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Zivadinov confused?
Replies: 33
Views: 6538

Having heard and watched Dr. Zamboni less than a week ago, and having taken extensive notes, I feel compelled and confident to point out that he takes care to explain that there is a relationship between CCSVI and MS and that it is not possible for MS to cause the things we see in CCSVI. How does MS...
by Arcee
Wed Feb 10, 2010 12:30 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Hamilton Conference Feb 7 .......Updated (Feb 22)
Replies: 124
Views: 26294

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 ...
by Arcee
Wed Feb 10, 2010 11:44 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Only 55% for buffalo study?
Replies: 91
Views: 17380

Earlier studies that showed a 100% or 95% correlation threw up red flags for most serious researchers. MS is a very complicated and very heterogeneous disease. Furthermore, it's generally accepted that 10 to 15% of people diagnosed with MS have actually been misdiagnosed, and are suffering from som...
by Arcee
Wed Feb 10, 2010 9:41 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Only 55% for buffalo study?
Replies: 91
Views: 17380

Just some perspective from something I picked up at the Hamilton workshop. There is a learning curve in doing these exams. And apparently if a place does them over time for different research studies, they have found that their percentage increases. A baseline rate of 65% for this kind of testing no...
by Arcee
Tue Feb 09, 2010 7:07 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Hamilton Conference Feb 7 .......Updated (Feb 22)
Replies: 124
Views: 26294

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? Thornyrose, there probably is more information on this site about those questions than w...
by Arcee
Tue Feb 09, 2010 5:40 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Hamilton Conference Feb 7 .......Updated (Feb 22)
Replies: 124
Views: 26294

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...
by Arcee
Tue Feb 09, 2010 4:58 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Hamilton Conference Feb 7 .......Updated (Feb 22)
Replies: 124
Views: 26294

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 affe...
by Arcee
Tue Feb 02, 2010 9:46 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Different approach to treating CCSVI Dake and Simka
Replies: 19
Views: 6169

Do you have records of all the patients Simka, Dake and Zamboni have treated? Have you conducted direct, above -board, detailed interviews of all three? Have you been privvy to their past and future private conversations?Since the first and the last are illegal, it would be fascinating to know how a...
by Arcee
Tue Feb 02, 2010 2:22 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Different approach to treating CCSVI Dake and Simka
Replies: 19
Views: 6169

there are only two feasible possibilities Considering that none of us have access to any doctor's medical records, and none of us, I believe, has asked these questions directly to all these doctors, and none of us knows the details of the conversations they have and will have, it seems fair to say ...
by Arcee
Tue Feb 02, 2010 1:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Trying as hard as I can for CCSVI
Replies: 7
Views: 1890

And you never know if the person reading a letter has MS or is close with someone who has MS. One letter like this could hit the right person and who knows what will happen...
Thanks for sharing the good experience.
by Arcee
Mon Feb 01, 2010 11:36 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Different approach to treating CCSVI Dake and Simka
Replies: 19
Views: 6169

And another thing to consider is that Dr. Dake and Dr. Simka are perfectly capable of having direct conversations about this kind of thing and seeing if there are, in fact, differences in how they approach things. They very well may have done so, and maybe they will (again) at the upcoming conference.
by Arcee
Fri Jan 29, 2010 9:27 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Chief of Jacobs Neurological Institute leaving
Replies: 21
Views: 5413

What he did say that stuck him my head was that Dr Zamboni had a wealthy friends that payed for the research. Do you know what he was implying? For example, that the research is biased? Or that is the only way to get it done because Pharma won't pay? Kind of intriguing. And, from many of our perspe...
by Arcee
Fri Jan 29, 2010 9:22 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: We Must Send a Message to Stanford: Support CCSVI Trial
Replies: 44
Views: 10443

Sure, you can send the same letter to everyone. If someone wanted to spend the time and tailor it (more medical arguments, more about reputation, more about dollars, etc.) by the recipient, that would be great, but the same one would work just fine. (I sent the same letter.) And a good reminder that...
by Arcee
Fri Jan 29, 2010 4:54 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: We Must Send a Message to Stanford: Support CCSVI Trial
Replies: 44
Views: 10443

And if you know any alums, be sure to encourage them to write!