from the post:
Dr. Siskin and I both agree that I fall into that one third or so of MS patients who show no positive benefit from CCSVI treatment. His ultrasound examination on Tuesday revealed that I no longer have poor blood flow in my jugular veins; I no longer have CCSVI. Yet, I’ve seen zero improvements in my condition in the 16 months or so that I've been treated (March of 2010 by Dr. Sclafani and March of 2011 by Dr. Siskin).
In fact, my condition has continued to deteriorate at about the same pace as it has for the past 10 years. Dr. Siskin politely and reluctantly discharged me from his care.
03 07A quick aside for some of the more seasoned CCSVI readers – I realize that the ultrasound test does not measure blood flow through the azygos vein. However, both Dr. Sclafani and Dr. Siskin thoroughly ballooned the azygos, even though there was not strong evidence of a restriction.
A controversial (read: insane) alternative multiple sclerosis treatment has gained a popular following in Canada via social media, wrongly influencing research priorities. The truth needs its own social-media PR campaign, and doctors might just be ready to wage it.
A new study argues that social media and the Internet are so influential that they're setting national research priorities. The study, by a group of Canadian doctors, was published today in Nature. [The rise of people power. Nature 472, 410-411 (27 April 2011)]
In a joint statement just released, the National MS Society and the MS Society of Canada gave a six month progress report on the seven society-funded, multi-disciplinary teams investigating chronic cerebrospinal venous insufficiency (CCSVI) and its possible links to multiple sclerosis.
In unprecedented fast-tracking last spring, the U.S. and Canadian MS societies gave more than $2.4 million (USD) to the seven “shovel-ready” projects proposed by teams of experts in the fields of radiology, ultrasound, vascular surgery, and neurology. These studies were chosen from scores of applicants by an international team of experts in relevant fields as having the greatest potential to quickly and comprehensively determine the significance of CCSVI for multiple sclerosis.
Britons rejected all CCSVI studies "because the panel were of the view there was insufficient data on mechanism or efficacy to consider a pragmatic trial."
The following correspondence was published on CCSVI Spy blog
26 October 2010
Dear Sir,
Enquiry concerning research on Chronic Cerebrospinal Venous Insufficiency
Further to my email of 30 September concerning research on chronic cerebrospinal venous insufficiency, we are now in a position to respond to you.
Research groups that want to conduct clinical trials of the “liberation” procedure for multiple sclerosis can now submit their plans for consideration, as Saskatchewan takes another step toward testing the unproven treatment.
The Saskatchewan Health Research Foundation (SHRF) on Friday issued a formal call for proposals, which looks to answer the question of whether the liberation procedure “is a safe and effective treatment for MS patients to relieve symptoms and improve quality of life.”
The Saskatchewan government has pledged $5 million to finance clinical trials of the procedure, which involves angioplasty to open veins in the neck.
Researchers need to meet a number of requirements to be eligible for potential funding, including that at least a portion of the research team be from Saskatchewan, the SHRF said.
A question recently asked; “What is the possible complication if you restenosed”? Now I trust this is an open source document as it is posted on several sites, and if it is not then I do apologies in advance. The answer was supplied by Dr Simka from Poland. I am just highlighting the points raised and will quote the relevant sections.
The International Symposium on Endovascular Therapy (ISET) educational meeting is presented annually in South Florida, the current ISET 2011 has over 1000 attendees (mostly MD's) from around the world.
For the first time CCSVI matter will be discussed during endovascular CME (stands for Continuous Medical Education) course.
[reekers11a]Reekers JA, Lee MJ, Belli AM, and Barkhof F: Cardiovascular and interventional radiological society of europe commentary on the treatment of chronic cerebrospinal venous insufficiency.Cardiovasc Intervent Radiol. 2011 Feb;34(1):1-2. Epub 2010 Dec 7.PMID 21136256, doi:10.1007/s00270-010-0050-5.
Department of Radiology, AMC, University of Amsterdam, Amsterdam, The Netherlands.
Department of Surgery, University of Chicago, Illinois, USA.
[vedantham10a]Vedantham S, Benenati JF, Kundu S, Black CM, Murphy KJ, Cardella JF,: Interventional endovascular management of chronic cerebrospinal venous insufficiency in patients with multiple sclerosis: a position statement by the Society of Interventional Radiology, endorsed by the Canadian Interventional Radiology Association.J Vasc Interv Radiol. 2010 Sep;21(9):1335-7.PMID 20800776, doi:10.1016/j.jvir.2010.07.004. PDF.
Mallinckrodt Institute of Radiology, 510 S. Kingshighway Blvd., Box 8131, St. Louis, MO 63110-1076, USA.
Well written personal story from Dr. Bill Code (Canada) who was diagnosed with MS 15 years ago and who recently underwent treatment for CCSVI performed by Dr. Arata (California)
Dr. Bill Code: "In short, I believe CCSVI is the “real deal” and is a part of the critical puzzle for the signs and symptoms of MS."
