Below is a list of doctors for the most part known to be performing the vascular surgery necessary to treat CCSVI in MS patients. I hope to update this list as I become aware of more doctors who are doing this surgery as well.
Friday, February 19, 2010
Highly fit multiple sclerosis patients... performed significantly better on tests of cognitive function
Click here to read more.
MS Learn Online is the National MS Society's online educational webcast series. This video features Patricia K. Coyle, MD, who discusses Ampyra (formerly known as fampridine SR), a new medication that may help people with multiple sclerosis to improve their walking.
Monday, February 15, 2010
Sunday, February 14, 2010
I found this fascinating quote today:
This month, CCSVI exploded onto the MS radar screen, as the Canadian news media picked up on the story and the University at Buffalo released positive results from the preliminary stage of its ongoing imaging study (click here for more info). While the news that Multiple Sclerosis may in fact be of vascular origin has the potential to fundamentally change our understanding of the disease, the CCSVI story contains other vital lessons and implications for patients, researchers, and doctors alike.The Wheelchair Kamikaze, Wheelchair Kamikaze, Feb 2010
You should read the whole article.
Thursday, February 11, 2010
Wednesday, February 10, 2010
More than 55% of multiple sclerosis patients have been found to have constricted blood vessels in their brains, a US study says.
The preliminary results are from the first 500 patients enrolled in a trial at the University of Buffalo.
The abnormality was found in 56.4% of MS patients and also in 22.4% of healthy controls.
The MS Society said it was intriguing but not proof that this caused MS - as one leading expert claims.
The New York researchers were testing a theory from Italian researcher, Dr Paolo Zamboni who claims that 90% of MS is caused by narrowed veins.
Dr Doug Brown, MS Society
He says the restricted vessels prevent the blood from draining fast enough and injure the brain by causing a build up of iron which leads to MS.
He has already widened the blockages in a handful of patients including his wife.
MS is a long-term inflammatory condition of the central nervous system which affects the transfer of messages from the nervous system to the rest of the body.
The Buffalo team used Doppler ultrasound to scan the patients in different body postures to view the direction of venous blood flow.
The 500 MS patients, both adults and children, also underwent MRI scans of the brain to measure iron deposits in surrounding areas of the brain.
The full results will be presented at an American neurology conference in April.
There were 161 healthy controls.
Robert Zivadinov who led the study at the University of Buffalo, said he was "cautiously optimistic and excited' about the preliminary date.
"They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis.
"We will know more when the MRI and other data collected in this study are available."
Dr Doug Brown, Biomedical Research Manager at the MS Society, said: "These results are intriguing but it is important to remember that although people with MS may show evidence of chronic cerebrospinal venous insufficiency in screening studies, there's no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.
"The next step is to determine what this actually means for MS and an investigation into whether there's any potential therapeutic benefit from treatment will be pivotal for this novel theory."
Tuesday, February 9, 2010
Centre to test for Chronic Cerebrospinal Venous Insufficiency (CCSVI) and it's possible link to MS
One of the first clinics in North America devoted to testing for a vascular condition that some experts believe is linked to multiple sclerosis is set to open later this month in Buffalo, just as scientists are to release more findings on the controversial theory.
The Buffalo Neuroimaging Analysis Center (BNAC) has announced that it will begin to offer testing for the newly discovered condition, called chronic cerebrospinal venous insufficiency (CCSVI), in mid-February due to overwhelming demand from MS patients.
Italian scientist Dr. Paolo Zamboni believes that CCSVI causes veins in the neck and upper chest to twist, narrow or become blocked; in some cases, these veins never form at all. The result is poor blood drainage from the brain.
Zamboni has found that more than 90 per cent of patients with MS have these malformed veins, and improper blood flow from the brain.
Due to the overwhelming response to Zamboni's research and to its own study on the condition, the BNAC said it will begin offering diagnostic venous testing to patients beginning in mid-February 2010.
Testing will include:
An MRI of the brain to measure the level of iron deposits
An MRI of the neck to study the jugular, vertebral and other collateral veins
A Doppler exam of the head and neck to determine blood flow
A follow-up visit with a doctor to discuss the findings
News of the findings comes days before scientists from the BNAC release data from their study that includes 500 MS patients who were tested for CCSVI.
"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI," Dr. Robert Zivadinov said in the BNAC newsletter.
Zivadinov said the second phase of the study will include another 500 patients and will "pose new and provocative questions about the CCSVI theory."
Scientist welcomes scepticism
Zamboni told CTV's Canada AM Monday that he welcomes skepticism about his findings.
"This is normal when there is a new finding in science," Zamboni said. "I think that this is positive because it stimulates debate."
Zamboni was in Hamilton, Ont., Sunday for a scientific workshop looking into the relationship between MS and CCSVI. Scientists from the United States, Europe and the Middle East reported that they had found CCSVI in more than 95 per cent of MS patients.
"The meeting yesterday was quite successful because we met a lot of colleagues from all over the world that are actually working on our theory," said Zamboni, who is a professor of medicine at the University of Ferrara in Italy.
According to Zamboni, a surgical procedure to restore proper blood flow, which he dubbed the "Liberation treatment," can reduce MS symptoms.
In a study of 65 patients who underwent the procedure, released in the Journal of Vascular Surgery, Zamboni says that 50 per cent of patients with the most common form of MS were relapse-free for at least 18 months.
In a control group of MS patients who did not undergo the procedure, only 27 per cent went 18 months without an MS attack.
Additionally, only 12 per cent of patients in the surgery group had brain lesions -- a sign of active disease -- compared to 50 per cent in the control group.
Research will take time
Dr. Mark Haacke, director of the imaging division in the school of biomedical engineering at McMaster University, organized the weekend conference and said "no one is claiming it's a cure."
"It's a cardiovascular problem first, it may be related to MS, it may cause MS -- but we don't know all those answers yet," he told CTV.ca. "That's going to take time to do very careful research to evaluate those MS patients that do get the operation.
"Do they get better? Do they stay the same? Do their lesions go away? Or do they at least not get worse. (It) may take years and years to really determine the effectiveness of this surgery."
MS societies around the world have responded with funding for research into CCSVI. The Italian Multiple Sclerosis Foundation has allocated up to $4.5 million for research and the MS Society of Canada has called for applications for grants for those studying Zamboni's findings.
Charity Intelligence Canada, a group that provides donors with research and information, called for additional research and funding into Zamboni's findings on Monday.
The group said Canadians donated $62 million to MS-related charities in 2009, and said "supporting CCSVI research presents an opportunity for donors to have high impact in their giving."
"Donors wanting to support CCSVI research in Canada should donate directly to St. Joseph's Healthcare and McMaster University in Hamilton, Ontario and University of British Columbia, designating their donations to CCSVI research," the group said in a statement.
However, experts have warned that the findings are far from being validated and those with MS should continue with their current treatment.
"Although the early data are of great interest, it is important to acknowledge that the concept of CCSVI as a cause of MS and the use of stents or balloons to widen veins as treatments, are ideas that are far from being accepted by most researchers in the field," the MS Society of Canada says on its website.
Experts have expressed concern that the initial excitement over the new procedure was leading some to drop their current treatment.
"To people with MS we say: don't abandon the course of treatment that you have started," Yves Savoie, the president and CEO of the MS Society of Canada told CTV News in November.
"Those treatments have been proven in large trials to be effective in reducing the burden of disability that comes with MS."
Haacke says that since most MS patients have MR scans performed, clinicians should consider performing additional scans for CCSVI.
"It's important for clinicians to begin to realize that they should be taking some time clinically – not on the research side – to scan their patients and find out if this is a problem," he said.
Canada has one of the highest rates of MS in the world, affecting between 44,000 to 78,000 in the country.
Source: CTV News © 2010 CTVGlobeMedia (09/02/10)
Monday, February 8, 2010
Saturday, February 6, 2010
Friday, February 5, 2010
The Walk is a critical part of the Societys fundraising efforts and is a significant program in funding research towards a cure for MS. From the 70-person Walk in Candle Lake, Saskatchewan, to the 3,700-person Walk in Winnipeg, Manitoba, the MS Walk is truly a family oriented, community-supported event. Although each community leaves their own unique mark on the event, no matter where you live you can be sure that youll come out to experience a day full of excitement and hope that one day we will live in a world without MS, and youll leave knowing that you are a valuable contributor to making it a reality.
Join the movement. End MS.
Register today for the 2009 MS Walk.
"A medical centre in British Columbia says it wants to become the first in the country to test the controversial theory that multiple sclerosis patients have blocked veins, preventing proper blood flow from the brain.
'There's a large demand for us to look into this,' Dr. Anthony Traboulsee told CTV News. 'Patients are very excited. We are very interested ourselves, and we want to meet the demand of our patients.'
A group of researchers at the University of British Columbia MS Clinic, part of the Vancouver Coastal Health Authority, are planning to study the theory, using a variety of imaging techniques. If it gets approval and funding, it appears to be the most comprehensive examination of this novel theory in the world.
They will be studying the findings of Italian researcher Dr. Paolo Zamboni, who believes that blocked veins in the neck and chest of MS patients lead to blood drainage problems and triggers the immune responses that mark the disease.
Zamboni contends that angioplasty surgery on these blocked veins, a procedure he calls the Liberation Treatment, can then open them. A preliminary study of the treatment in 65 patients showed it improved the quality of life for many patients, and as long as the veins remained open, symptoms of MS were reduced and new attacks were halted." (link to the article: