I could be going in exactly the wrong direction, but it seems to me that a lot of the difficulty is that anybody
connects all CCSVI symptoms with MS. There could be some others! My grandfathers and one grandmother died of heart disease, on my mother's side, both at a young age (50 and 66). The other grandmother debilitated by stroke for her last decade. Diseases of the circulation (my mother with vasculitis, father with strokes) affect nearly every member of my family.
With me, and the brother who had hydrocephalus, it has more been head circulation, but I have already had one heart attack. I think a cogent argument can be made for this, not only as a treatment to alleviate symptoms for which MS could be blamed, but to improve pathological circulatory problems which can be fatal in other ways. They probably have a genetic component which is much easier to trace than MS alone.
Two family members of mine have Chronic Lymphatic Leukemia, another disease of the blood. One doctor of mine said they may be two sides of the same coin (their cancers and my MS). I think much suffering, and probably some deaths, can be avoided and delayed by this treatment. Moreover, people like the surgeon on The Nature of Things
, can go back to their jobs! The great body of anecdotal evidence, not on the Internet, but in the hands of many doctors today, along with potential re-employment of sidelined workers, should be enough to justify the practice, and the funding, by both private and public insurers
However, the treatment is road-blocked because of its effect on improving the lives of MS patients. I believe with all my heart that I have the nervous problems, immune symptoms, pain, and psychological difficulty which are common in MS patients. I also know to be true, the things I have said about the odds against the healthy survival of my circulatory system.
It is not enough for a few well-connected doctors to reply that if I just ate better, and got more regular exercise, that should be enough, or that collateral veins should be sufficient to provide for my brain's needs, and drugs are all we have for the rest. I think, besides the duty to avoid harm, doctors have a duty to treat suffering, when they know they can do so with very low risk. The risks of this procedure are known, and manage-ably low. I would say the grounds for doing it under our public health care system, strained as it is, are much more than humanitarian gestures for people with faint hope.
This is 2012, not 1970, and people are more than ready: doctors, patients, and loved ones alike. The barriers here are much less formidable than the disease itself, and those who can help are already doing as much as they are allowed to by legal, political, and yes, financial interests. People need to stop saying no, and get to yes. Everyone can still win.
Modern medicine is a juggernaut, heavily invested in the drug industry and the status quo. I don't want to be a hostage of somebody else's inertia anymore. I have given my share to the drug industry, and to science. I want something in return.
The procedure has benefits, so the task now should be to work towards maximizing them, and minimizing risks. Dr. Sclafani has shared some valuable experiences. He has shown that, in a complex area where each patient is unique, with much less radiation, a very thorough investigation can still be done, using IVUS. More work of this kind needs to be done as soon as possible. We cannot do it by sitting on our hands.
It is hard to decide whether I should even be on this forum, when many of my symptoms may turn out to have been what is demonstrably a circulatory problem. (Maybe there should be a "ThisIsNotJustMS"?) For that and some more personal reasons, you may not see much more here from me. I think you are all dedicated, smart and brave, and I do wish you all the best. Unless I come back, in which case, you can always stop listening to me