CCSVI, you and me: An Opinion Statement

CCSVI is all the rage it seems on the "MS circuit"...or is it? Surely by now most people with MS have heard about Dr. Zamboni's research into a condition he calls CCSVI- Chronic Cerebro-spinal Insufficiency. The short version (very short) for my non-MS friends is that the veins that drain the blood away from the head are blocked and/or partially collapsed in MS patients, resulting in restricted flow. This also causes backflow of blood into the brain and spinal cord, and along with it a toxic buildup of iron.

Because of various factors, a procedure to correct this condition has not actually been approved here in the US, except for trial studies. I'm pretty sure phase two of the Buffalo trials is underway. In many, if not most, MS patients that have been studied so far there has been a stenosis of the internal jugular veins on one or both sides of the head/neck. In many, there are other veins affected as well, most particularly the azygos vein.

Many MS patients, desperate to be relieved of their distress, haven't waited for the outcomes of studies or approval before having corrective procedures done- often opting to go to a foreign country to have the balloon angioplasty .Granted, the info coming back does seem promising, and some of the videos I have seen seem quite compelling. But is it safe?

The MS organizations haven't to my knowledge released a statement regarding CCSVI, though they have some info on their websites. The neurologists who are currently treating MS patients potentially stand to lose out if this turns out to be a viable treatment option, as it will shift treatment from Neurological drugs to slow the progression to a teatment of the underlying stenosis, usually done by an interventional radiologist.

I have been in close contact with several MS pateints who are on the CCSVI bandwagon, and even have spoken with some who have had the procedure (a ballon angioplasty on the affected veins, sometimes with stent). I wish them luck, and pray for their recovery. It is my understanding that procedures are now being done in some instances in the US, but under what protocols I have no idea. I am hoping the early results will lead to a much quicker pace and open this up to more patients.

In the meantime, because I have MS, and know just how wretched it can be, I can only say be safe out there, look at your options, do what is best for you. Let's all hope this is the miracle that so many have waited for.

National MS Society Support Group Meets Thursday

The Anderson-area National MS Society self-help support group will meet this Thursday, October 21, 2010 at 7pm in the Bennett Rehab dining room at St. John's Hospital. Those living with MS and their caregivers are welcome.

This is a self-help group with news, discussions and occasional speakers on topics of interest to the MS community. Hope to see you there!

Tea-time at the Ranch

The Tea Party movement is mad as a March Hare if they think they are going to get the kind of change most members want by voting Tea Party this November. That is, unless solidifying the corporate control over our used-to-be democracy is the goal.

I have watched intently this movement with fascination and dismay as these tea-party types rail on one hand against the Bush corporate bailouts, while simultaneously pushing a free-trade agenda (can you say one-world government?). That they don't see the illogical inconsistencies in these positions seems to be lost on them.

The tea party may possibly win a few seats this year, and it remains to be seen if they will make a difference in the control of the congress. But the fact remains that this is a government of the people, by the people, and for the people- a fact the tea-partiers I know seem to crow at every turn (as if their corporate agenda is exactly this). It is not. Of the PEOPLE means people, not corporations. The supreme court of the United States made yet another grievous error in the Citizens United case by opening the floodgates to unlimited corporate funding into our elections. I can think of no quicker way to lose our democracy than this. The only thing I see coming out of their movement is chaos and further harm to our country. Apparently this is ok with them, just as long as we stop the Obama agenda of tightening our oversight of Wall Street, big corporations, and the like. Because we all know that that the big corporations know better than we do how to handle a Wall-Street meltdown or a Big Oil spill. Just ask them, they will tell you.

One can only hope these Tea-Party types come to their senses before election time, though that is doubtful. They are so riled up about having to actually pay taxes to support roads and bridges they are beside themselves- (and they pretty much will be after we quit paying for roads and bridges). They are so riled up about being forced to do the right thing by making sure they have insurance coverage that they forgot that it was their idea in 1993. What they don't do is acknowledge their hipocricy. They don't acknowledge that their own ideas are all over the map. Really, they don't acknowledge anything but whatever the latest meme-of-the-day is.

I, of course, will be watching this play out on the TV and reading the political stuff as always, and sipping a glass of lemonade. And if, by some unholy event, the Tea Pary gains traction I'm fully ready to mix up some tea and invite my Democratic friends over to discuss a counter party to level the playing field.

Oh, and a final word of advice for my divisive friends: If Glenn Beck, that modern-day genius and philosopher, offers you any Kool-Aid, I would highly advise you to pass on it.