Calling Dr. K...

[rogesgallery]

Would Dr K plee ase report to the research Department-- Dr K to the research Department.

www.gizmag.com/ccsvi-multiple-sclerosis-ms-cure-zamboni/13447/

[BoatBabe]

Wow. Interesting article, Roges.

[doctork]

I had this open last night and was going to respond, then realized I was just too tired, had to wait until morning.

This CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) topic is all over the MS internet community - thisisms, msworld, neurotalk, etc.
This one has a lot of links:

neurotalk.psychcentral.com/showthread.php?t=90660&highlight=CCSVI

I am not sure what to think; no one is really, as this is too new. Medical science has "remarkable new breakthroughs" every day, many of which never pan out, or worse yet, turn out to be harmful. OTOH, there are also breakthroughs where the researcher is belittled for years until the research supporting the concepts is so overwhelming it is finally accepted as standard treatment, and then everyone says "What took so long?"

MS is particularly difficult because the most common type is Relapsing-Remitting MS (RRMS), which by its nature relapses and remits. Therefore most any patient given any treatment will get better; the patient will also get better if no treatment is given because the nature is for the Relapse to Remit. Relapses happen with varying frequency, but patients may go years between relapses, or they may be very frequent and quickly turn into PPMS or SPMS (Primary Progressive or Secondary Progressive).

There is also no cure for MS. Some treatments can be given to shorten the duration of a relapse, but the mainstays of treatment are DMDs (Disease Modifying Drugs) which reduce the frequency of relapses, but don't eliminate them, and have no effect on the degree of recovery from the relapse. They are terribly expensive ($2,000 to $3,000 per month and up), require frequent painful injections, and are a pain in the ass, imho. DMDs are generally FDA approved only for RRMS, so may not be available to people with the other types of MS.

Given all of the above, you can see why patients with MS (and their families and caregivers) jump at news like Dr Zamboni's. In the US, there are 250,000 - 400,000 people with MS, most of whom are desperate for some sort of effective treatment. Since no one knows the cause, has a cure or good treatment, and there's no idea how to prevent it, people are willing to try anything. It's a situation ripe for exploitation - or for research volunteers for the treatment that will prove to be The Cure. Someone always has to be the first to get the experimental treatment that turns out to be the Holy Grail. That's what I always tell my patients who are getting ready to go into a clinical trial.

Some Americans have traveled to Italy to be treated by Dr. Zamboni. If you search the net, you'll see their posts and they all claim they are completely cured. Some have been treated by a doctor at Stanford who is currently doing this stent procedure. One poster claimed it cost $80,000 and isn't covered by insurance, which is of course typical as insurers don't pay for unproven therapies. But that is a lot to pay out of pocket. A clinical trial is being started at SUNY-Buffalo, a premiere MS research center, which is good.

For me personally, I am not messing with the medical establishment any more than I have to, as I have had more than enough interventions already, and I am doing pretty well. "Don't trouble trouble til trouble troubles you." As it happens, for other reasons I have had MRIs looking for iron in my brain, and it is not there in any abnormal quantities, or in any place where it doesn't belong. Good enough.

[rogesgallery]

I shall pass your observations on to my son who passed the story to me. Thanks..

[doctork]

Here's a really good website/blog on CCSVI:

www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html

Marc is smart, well-informed and a very entertaining writer. His videos of being a "wheelchair kamikaze" are really funny (and sometimes sadly true).