Researchers at the University of British Columbia’s multiple sclerosis clinic are working to establish standards of care for patients who have travelled abroad to receive a controversial — and as-yet unproven — treatment that widens narrowed neck veins.
The provincial government is providing the clinic with $700,000 for the next three years for a program that will also include a voluntary registry of patients in B.C. who’ve undergone the procedure and a system to allow health-care providers across the province to reach MS experts in Vancouver when dealing with such patients.
The treatment rests on the theory that MS is caused by a narrowing of veins in the neck that carry blood to and from the brain, a condition called chronic cerebrospinal venous insufficiency, or CCSVI. The procedure, dubbed “liberation therapy” by proponents, involves angioplasty or a stent to widen the veins.
Medical studies have been mixed about whether there is any link between narrowed veins and MS, and a U.S. study released just last week cast doubt on the theory.
More about The Canadian Press: UBC clinic to track patients who have MS ‘liberation’ therapy outside Canada
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Background: Chronic cerebrospinal venous insufficiency (CCSVI) was recently described in patients with multiple sclerosis (MS). A subject is considered CCSVI positive if ?2 venous hemodynamic (VH) criteria are fulfilled.
Objective: To determine prevalence of CCSVI in a large cohort of patients with MS, clinically isolated syndrome (CIS), other neurologic diseases (OND), and healthy controls (HC), using specific proposed echo-color Doppler (ECD) criteria.
Methods: Transcranial and extracranial ECD were carried out in 499 enrolled subjects (289 MS, 163 HC, 26 OND, 21 CIS). Prevalence rates for CCSVI were calculated in 3 ways: first, using only the subjects for whom diagnosis was certain (i.e., borderline subjects were excluded); secondly, including the borderline subjects in the “no CCSVI” group; and finally, taking into account subjects who presented any of the VH criteria.
Results: CCSVI prevalence with borderline cases included in the “no CCSVI” group was 56.1% in MS, 42.3% in OND, 38.1% in CIS, and 22.7% in HC (p < 0.001). The CCSVI prevalence figures were 62.5% for MS, 45.8% for OND, 42.1% for CIS, and 25.5% for HC when borderline cases were excluded (p < 0.001). The prevalence of one or more positive VH criteria was the highest in MS (81.3%), followed by CIS (76.2%), OND (65.4%), and HC (55.2%) (p < 0.001). CCSVI prevalence was higher in patients with progressive than in nonprogressive MS (p = 0.004).
Conclusions: Our findings are consistent with an increased prevalence of CCSVI in MS but with modest sensitivity/specificity. Our findings point against CCSVI having a primary causative role in the development of MS.
More about Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS
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“Neurologists believe the interventionalists are overstating the possible value of CCSVI and that commercial interests are overriding scientific inquiry,” according to Dr. Burks, a neurologist and clinical professor of medicine at the University of Nevada, Reno. Patients, armed with anecdotal evidence downloaded from the Internet, are certain that CCSVI surgery is the miracle they’ve been waiting for and perceive the hesitancy of U.S. and Canadian neurologists to embrace the treatment as evidence of a possible conspiracy with pharmaceutical companies who stand to lose billions of dollars if the surgery becomes a first-line treatment, he said. Further, he noted, advocates of CCSVI claim that neurologists who refuse patients’ demands for diagnostic testing and surgical referral for CCSVI are jeopardizing the safety of those patients, who are traveling to foreign countries such as Poland, Bulgaria, Mexico, Costa Rica, and India to get the care that they cannot receive in North America.
Both camps point to the much publicized case of a Canadian MS patient who traveled to Costa Rica for jugular vein angioplasty and died from a ruptured vessel as evidence that supports their respective positions, said Dr. Burks.
To date, the majority of the evidence regarding CCSVI diagnosis and treatment in MS is inconsistent, and can be confusing, Dr. Burks noted.
More about Conflicting CCSVI Data Lead to Call for New Research, United Message : Internal Medicine News
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Watson McGregor has primary progressive MS -the less common variant where the disease progresses rapidly after its first onset. Early research into CCSVI and MS has shown venous angioplasty to be less effective for those with primary progressive MS, but the McGregors still wanted to give the procedure a try.
Watson, 53, had his first venous angioplasties in June in Bulgaria. For six weeks afterward, his symptoms improved dramatically, Alisa said. His energy returned and he could speak clearly: “It was just like somebody snapped their fingers and he was back,” she told The StarPhoenix in August.
His condition declined, however, and they decided to go back to Bulgaria in September, where doctors inserted two stents in his veins in the hope the veins would stay open rather than re-collapsing, which is what they believed had happened.
More about MS patient wants help
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The Alberta government says it will spend $1-million to track the results of people who have travelled overseas to have a controversial multiple sclerosis treatment not currently available in Canada.
Health Minister Gene Zwozdesky says the web-based study will help determine whether the province should proceed with a clinical trial of a procedure that opens veins in an MS sufferer’s neck.
More about Alberta to observe MS patients who went abroad for ‘liberation therapy’ – The Globe and Mail
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An Ontario man with multiple sclerosis died of complications after a controversial treatment in Costa Rica to open up his neck veins, CBC News has learned.
Mahir Mostic, 35, of St. Catharines died on Oct. 19, one day after doctors in the Central American country tried to dissolve a blood-clot complication.
“We didn’t find exactly what happened with Mahir, but I mean it was very terrible story for us,” vascular surgeon Dr. Marcial Fallas of Clinica Biblica in San Jose said Thursday.
“He was a person that was looking [for] some way to improve his life. He found that for a short period of time his life improved.”
After Mostic paid $30,000 to go to Costa Rica for treatment in late June, he was operated on three times to have a mesh stent inserted to prop open a vein in his neck.
More about CBC News – Health – Ont. man dies after MS vein opening
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Several Canadians with multiple sclerosis who underwent the controversial ‘liberation treatment’ overseas have developed serious complications stemming from stents that were inserted after the operations.
More about MS patients warn of complications after ‘liberation’ – CTV News
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The whole CCSVI issue is clouded by conflict of interest. Conflict of interest in this case is when a researcher, research group, or commentator have a vested interest in the subject under study and are therefore potentially biased. Conflict of interest can come from many sources; it is commonly financial, such as when a researcher stands to profit from the product being researched (such as when a drug company conducts a clinical trial of a new agent they have developed); but conflict of interest can also be related to career advancement, or prestige, or relationships that researchers have.
For instance with CCSVI, Zamboni has a clear conflict of interest in that his wife has MS. I understand that conflict perfectly, given that my mother died of MS. Personally, I find that such a conflict of interest can be very helpful, in that it often makes the researcher very passionate about the research, and more likely to persevere in the face of adversity. But it can cloud the judgement of the researcher; I am aware that to some extent my conflict of interest produces a bias towards research that supports things that can be actively done to improve outcome, like diet, exercise, meditation, etc, whereas I tend to be biased against research that suggests such interventions are not helpful. But I try hard to remain objective. Zamboni may well have similar bias towards finding a cure, and towards vascular techniques, and this may subtly influence his assessment of ultrasound scans, for example, when he knows that the person being scanned has MS. Those of us who use ultrasound daily know just how subjective and operator-dependent the interpretation of these scans is.
More about What are we to make of CCSVI? « Overcoming Multiple Sclerosis
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ECTRIMS (European Committee for Treatment and Research In Multiple Sclerosis) hosts the world’s largest conference devoted to basic and clinical research in MS.
This year’s meeting took place in Gothenberg from 13-16 October and featured a wide range of presentations, posters and reports of new and ongoing research.
Below are brief reviews of some of the research reported.
ECTRIMS round up | News | MS Trust – Information, education, research and support
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‘Liberation therapy’ doctor now warning MS patients to wait – The Globe and Mail
According to NeuroSens, a subscription-based news service on neurological matters, Dr. Zamboni told an MS conference in Gothenburg, Sweden, that patients shouldn’t go ahead with such surgery, except in the case of clinical trials.
“Surgery is not recommended at this stage,” he said, during a presentation this week to the Congress of the European Committee for Treatment and Research in MS.
He also said he does not support “medical tourism” – the practice of some patients who travel overseas to clinics that will perform the surgery. Thousands of people are believed to have done this.
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