Despite the lack of agreement among experts regarding whether CCSVI exists, or if it does, whether it plays a role in the pathogenesis of MS, and if it does play a role, whether reversing it with angioplasty or stents might improve symptomatology, enthusiasm for CCSVI engulfed the MS community. Interest spread quickly, in large part because of vocal patient advocacy and Internet forums such as www.thisisms.com. There is even the Website, LiberationProcedureCCSV.com.
Michael Dake, MD, Professor of Cardiothoracic Surgery and Chief of the Catheterization and Angiography Center at Stanford Medical Center in Stanford, California, performed more than 35 endovascular procedures for CCSVI.[6] However, after one patient on warfarin anticoagulation following placement of an internal jugular venous stent had a fatal brain stem hemorrhage and another patient required emergency heart surgery for a dislodged stent, all CCSVI procedures were suspended.
Because endovascular procedures for CCSVI are not approved in the United States or Canada, many patients seek treatment outside North America at their own personal expense. Patients may receive endovascular balloon angioplasty alone or in combination with venous stenting.[7] There is no central registry to track these patients, their results, or their adverse events. One patient treated in Costa Rica died from complications.
To accommodate these patients, TraveloMed, a medical tourism company, offers a "Liberation Treatment Package," including flight, hotel, local taxi, and treatment beginning at 4500 euros. Their Website encourages patients to "Sign up now to get the procedure done this month!"
A "nonprofit" venture, the CCSVI Clinic, also arranges a medical travel package. Balloon venoplasty and stenting are available for $15,000 at Noble Hospital in Pune, India. Their Website includes a disclaimer, "CCSVI Clinic can accept no responsibility or liability whatsoever for medical procedures, advice, opinions and services provided by others."
Numerous testimonials to the success of these procedures have appeared on YouTube, including one from Ginger, who sought treatment in Poland. Other patients have sought treatment in Bulgaria, Costa Rica, India, and Mexico. Ginger enthusiastically describes improvement in her symptoms, but nothing to suggest a cure. Given the relapsing remitting nature of MS, it is impossible to determine from this and other anecdotal reports whether any improvement after CCSVI treatment is related to the procedure, a placebo effect, or simply the natural history of a relapsing-remitting disease. Nonetheless, many patients have embraced this treatment as an MS cure. Patients are so invested in this therapy that one woman who experienced transient improvement of her balance, fatigue, and mobility after treatment in India attributed the return of her symptoms 6 weeks later to a return of the "blockages" rather than a failure of the therapy.
To date, no testimonial to the success of CCSVI procedures for MS in the form of a randomized, controlled, clinical trial has appeared in any peer-reviewed publication. Until a prospective, randomized, sham treatment trial demonstrates the value of endovascular treatment for CCSVI, the Cardiovascular and Interventional Radiological Society of Europe has recommended that this treatment "should not be offered to MS patients."[8]
Conspiracy Theory
Some patients endorse a conspiracy theory, believing that neurologists, the national MS societies of the United States and Canada, and pharmaceutical companies are suppressing CCSVI because a cure for MS would mean a loss of business and profits. According to one blogger whose wife has MS, "They [the MS societies] have become a new enemy that we have to fight against, in addition to MS, and we must be determined." As Ginger declared in her video, "We're going to win this."
http://www.medscape.com/viewarticle/745162_2?src=stfb