Travelling for CCSVI

Ploughman M, Manning OJ, Beaulieu S, Harris C, Hogan SH, Mayo N, Fisk JD, Sadovnick AD, O’Connor P, Morrow SA, Metz LM, Smyth P, Allderdice PW, Scott S, Marrie RA, Stefanelli M, Godwin M. Predictors of chronic cerebrospinal venous insufficiency procedure use among older people with multiple sclerosis: a national case-control study. BMC Health Serv Res. 2015;15(1):161. [Epub ahead of print]

BACKGROUND:Following the initial reports of Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the purported curative potential of venoplasty, (coined the ‘liberation’ procedure) Canadians living with multiple sclerosis (MS) began to travel abroad to receive the unregulated procedure, often placing them at odds with their health providers. The purpose of this study was to determine the factors influencing older MS patients’ decision to undergo the procedure in order to develop more specific and targeted health information.
METHODS:We performed secondary analysis of data collected as part of the ‘Canadian Survey of Health Lifestyle and Aging with MS’ from people over the age of 55 years with MS symptoms for 20 or more years. The survey consisted of self-reported information on impairments, disability, participation, demographics, personal and environmental factors. In order to compare respondents who underwent the procedure to those who did not and to develop a predictive model, we created a comparison group using a case-control algorithm, controlling for age, gender and education, and matching procedure cases to controls 1:3. We used multivariate stepwise least likelihood regression of ‘a priori’ variables to determine predictive factors.
RESULTS:The prevalence of the ‘liberation’ procedure in our sample was 12.8% (95/743), substantially lower than reported in previous studies of complementary/alternative treatments in MS. The predictive model contained five factors; living alone (Odds ratio 0.24, 95%CI 0.09-0.63), diagnosis of anxiety (Odds ratio 0.29, 95%CI 0.10 – 0.84), rating of neurologist’s helpfulness (Odds ratio 0.56, 95%CI 0.44 -0 .71), Body Mass Index (Odds ratio 0.93, 95%CI, 0.89 – 0.98) and perceived physical impact of MS (Odds ratio 1.02, 95%CI 1.01 – 1.04).
CONCLUSIONS:Predictive factors differed from previous studies of complementary/alternative treatment use likely due to both the invasiveness of the procedure and the advanced age of our study cohort. Our findings suggest that health professionals should target information on the risks and benefits of unregulated procedures to those patients who feel dissatisfied with their neurologist and they should include family members in discussions since they may be providing the logistical support to travel abroad and undergo the ‘liberation’ procedure. Our findings may be applicable to others with chronic disabling conditions who contemplate the user-pay unregulated invasive procedures available to them.

As you must realise CCSVI has fallen from grace and there are few studies reporting on this. We stopped posting because of the bad behaviour of a few and they forced moderation of posts.

The CCSVI phenomenon took the establishment by surprise  and the procedure was sold by some dubious Docs,  without any proof that the procedure worked. This study comes up with a few factors that linked to the use of the angioplasty procedure. One was “patients who feel dissatisfied with their neurologist” should have a chat with their health care professionals. So the paper seems to suggest you say “Sorry doc I’m off to try some dodgy procedure because I think you are rubbish”. Um..maybe think about a change of neuro if you thinking about a bit of health tourism.

About the author


1 comment

  • "Sorry doc I'm off to try some dodgy procedure because I think you are rubbish".

    Fully agreed MD. I had to "quit" 2 neuros in the space of 12 months as they refused to elevate me to a high efficacy drug despite all the evidence….until I landed in the hands of G.

    Lesson learned: one is better off finding a neuro that suits his personality and risk appetite profile rather than educating unwilling doctors.



Recent Posts

Recent Comments