I have had the good fortune to touch the lives of nearly 1000 CCSVI patients. My observations, while not randomized controlled studies have value. How many neurologists have seen so many patients let alone have even a cursory knowledge of venous physiology? Please, listen to what I have to say. Pass judgment afterward.
First, what are the characteristics that lead one to the diagnosis of CCSVI versus Multiple Sclerosis? What is the evidence to support this? Finally, why do I dismiss the placebo effect?
A patient with CCSVI experiences fatigue, interrupted sleep and dysfunction of the autonomic nervous system. Many experience cognitive dysfunction. This is usually in the form of difficulty with word finding. A very unique complaint that is present in a minority of patients is headache upon awakening.
I came to the conclusion that these are the symptoms of CCSVI from several observations. Initially patients presenting for treatment had the diagnosis of MS. A common theme when taking a history of these patients was the suffering from fatigue, interrupted sleep and autonomic dysfunction. It is often said that MS is different for each person. I would agree. I have seen a diverse array of neurological symptoms in the MS patients I've seen. However, time after time, hundreds of times. The symptoms I consistently heard were fatigue, interrupted sleep and autonomic dysfunction.
It became apparent that following CCSVI treatment the symptoms that responded were fatigue, interrupted sleep and autonomic dysfunction. Early in my experience with CCSVI I treated some MS patients that did not have these symptoms and they failed to respond in each case. However, patients with these symptoms frequently had a good response to treatment. If a patient re-stenosed these same symptoms returned to pretreatment state. Occasional patients developed thrombosis or occlusion of the jugular vein after treatment. With occlusion the flow was even less than it was pretreatment. The CCSVI symptoms not only returned but were of increased intensity when jugular occlusion developed.
It has been said that CCSVI responses are the result of placebo effect. I know very little about the placebo effect. I suppose it's possible that the autonomic nervous system could respond. Is it conceivable that a patient that couldn't move a limb or speak could because of a placebo? Well if a placebo expert says so I won't argue. It is interesting how the placebo effect results in such a consistent response. The same symptoms improve despite no suggestion of what could improve in many patients. But I do think the placebo theorists should know that the majority of patients during the follow up visit report no change. It is only with direct questioning about specific symptoms that the patient acknowledges any change at all! A very interesting case was that of a young woman who suffered from severe problems with short term memory. Within seconds she would forget what she was doing or where she was. During her procedure she would forget why she was there. Must have told her over 30 times during the procedure why she was there and what I was doing. When we finished she had no idea what we did or that she had even undergone a procedure. It is inconceivable how someone unaware of having a procedure could experience a placebo effect. This woman had a tremendous response.
Perhaps the most important thing to understand is that CCSVI is not MS. CCSVI is present in people who do not have MS. The CCSVI procedure does not treat MS. Many patients treated for CCSVI report improvements in MS symptoms. Just as a MS patient with a poorly functioning thyroid may experience improvements in MS symptoms when thyroid hormone therapy is started.
It is often said MS is a disease of waxing and waning course. Critics of CCSVI attribute improvement to the natural course of the disease. The improvements occurring after CCSVI treatment being coincidence. Well I've been witness to over 500 coincidences! CCSVI is not MS but it does occur in patients with MS. The focus of research should be how treatment of CCSVI may lessen the symptoms of completely separate diseases. I treat CCSVI because it improves the lives of suffering human beings.
Dr. Mike Arata
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