Recently, CTV.ca published a story"CCSVI one tumultous year later: where do we go from here?" The story summarizes how neurologists and MS Society officials, "longtime subscribers to the premise that MS is an autoimmune disease, gave a unanimous thumbs-down to the possibility that obstruction of venous drainage in the neck and/or chest caused blood to back up and leak toxic iron from damaged thin-walled veins deep in the brain, killing nerve cells. Some even went so far as to call CCSVI a hoax"
If you or anyone you love has MS, then you are well aware that since Italian interventional cardiologist Dr. Paolo Zamboni's discovery of Chronic Cerebrospinal Venous Insufficiency syndrome in 2008, the Multiple Sclerosis community has fairly buzzed with information sharing, activism, testimonials, enthusiasm and hope.
For the most part – though with definite, notable exceptions – neurologists in the US and Canadian medical communities have been slow to embrace the treatment for CCSVI (the commonplace angioplasty, but performed in the MS patient’s stenosed jugular and/or azygous veins ); in some places, patients cannot receive even diagnostic testing for the syndrome.
So North American MS patients looked further abroad for treatment, and soon videos began popping up all over the internet talking about their CCSVI treatment in Bulgaria, Poland, Mexico, and Costa Rica. The US and Canadian medical community has responded to these intrepid patients with attitudes that range from encouragement with caution, to outright alarm, and both sides are armed with equally compelling data support points that are reasonable and should not be ignored.
Efficacy of Treatment
In an open study, Dr. Zamboni provided CCSVI treatment for 65 MS patients, reporting a 90%+ correlation in the occurrence of CCSVI to MS and a lasting positive effect of the Liberation procedure (as it was dubbed) with 70% of patients without recurrence of symptoms 2 years post treatment.
A frequently cited study by the University at Buffalo was published inFebruary 2010 (“CCSVI Imaging Study”) studied 500 subjects, with results demonstrating a link between the vascular abnormalities that characterize CCSVI and MS: 56% of MS patients were diagnosed with CCSVI while only 22% of non-MS patients demonstrated similar venous narrowings.
However, the initial enthusiasm for this near universal correlation between CCSVI and MS was premature. The Annals of Neurology reported two CCSVI-related studies (Sweden, Germany), concluding “the theory that CCSVI plays a significant role in the development of MS) must be considered unconfirmed and unproven at this time.”
Many patients were as dismissive of these findings as neurologists have dismissive of the large number of anecdotal reports of CCSVI-driven improvements in function spreading across the internet. Yet in all of the emotion around the subject it is easy to forget that there is, in fact, good reason for neurologist caution on the subject of CCSVI.
Unlike the better known anatomy of arteries associated with the central nervous system, the venous system is much less understood. The knowns of angioplasty in the arteries are a guideline, not a guarantee, of the safety and efficacy of the same treatment in the veins.
In addition, MS itself is certainly not fully understood; it is a disease with a history of misdiagnosis, with the National Institutes of Health reporting as many as 10-15% of MS patients are misdiagnosed, skewing clinical study results. In response to this problem, the NIH developed the "Natural History of MS" to create a standard clinical definition of MS.
It can be difficult to assess the quality of international medical care, since familiar indicators used to judge the acceptability level of US care are not readily available. This has been changing steadily in the past few years as self-insuring businesses and even big insurance companies such as Anthem Blue Cross, United Health Care and other insurers begin including international hospitals in their networks, but for now, it means that when patients are considering international care they must turn to the internet in search of other medical travelers.
The increased internet traffic has drawn more and more providers to the arena, advertising their CCSVI medical travel packages. While there are many fine healthcare options abroad, unfortunately in medicine as in any other field there are inevitably opportunists.
Anxious patients can inadvertently contribute to the proliferation of these opportunistic providers by focusing on a natural concern – the price of the procedure. It is a regrettable but unavoidable reality that choosing a healthcare provider, like many other life choices, entails making a cost-benefit analysis .
In assessing the price treatment, one of the most important considerations patients weigh in the cost/benefit analysis is whether to have the treatment as an in-patient or out-patient.
Though out-patient treatment might save the patient a few thousand dollars, that benefit of hospitalization should not be lightly dismissed. Hospitalization means access to on-site catheterization labs, 24x7 nursing, emergency, and ICU care, as well as specialists in emergency surgery, neurology, and cardiology – key for MS patients who are not ambulatory or experiencing severely impaired function.
Additionally, while the risks of the angioplasty procedure are well-understood, there are more unknowns than knowns regarding the venoplasty treatment and its aftermath.
For these reasons, CCSVI is most safely performed as an in-patient treatment, with patients remaining under medical supervision for at least 48 hours after treatment; for patients who suffer from severe loss of function, the period of post-procedure observation should be at least 72 hours, preferably 5 days.
Another cost-benefit analysis an MS patient considering CCSVI treatment must make is the experience of the treating medical team. Working with a less experienced/credentialed team can save the patient a few thousand dollars, however this benefit must be carefully weighed against the risk factors presented by the fact that “normal venous anatomy” is not definitely known, therefore CCSVI diagnostic testing and treatment protocols (such as the appropriate use of stents), requires particular experience as well as expertise.
The treating medical team ideally should be on-staff at the hospital, which ensures they have met a number of institutional and governmental credentialing checks regarding training, continuing education and professional standing in the medical community.
In addition the medical team should be comprised of specialists across the subspecialties of interventional radiology and interventional cardiology, as well as neurology or, ideally, interventional neurology (a new subspecialty of neurosurgery, responding to the need of vascular interventions being done in the neck and above, as is the case with treatment for CCSVI.).