My take on CCSVI


Geez, 9 months since my last post. Still juicing, and my visit to the neurology department at Mayo was uneventful in that I retained my pilot's license another year!

I was rear-ended in a pretty bad accident in March and my 3/4 ton Suburban was destroyed. I was sitting at a stop sign and a Jeep hit me from behind about 55-60 mph. I've had trouble getting back into shape over the past few months, but overall doing ok. A little overweight is my biggest compaint on that.

I have been following the CCSVI like many people with MS have. I have a good friend who is an anaethesiologist who has been helping me do the research, and I've been watching the evidence grow that a liberation treatment might be a remedy.

I am only aware of a few US treatment centers. Most of the “centers” in the US are medical tourism coordinators that will send you to Poland, India, Mexico, or otherwise, and charge fees for sending you to these places.

After doing the research and following the results of many people who have undergone it, I've decided I will be having a CCSVI procedure shortly. I am convinced this is the way to go. Will it work, or am I convinced I'll be normal again? No. What I am willing to do, though, is rule it out, with my own money, that it will or won't work. If I recover, great. That's the best possible outcome and I'll be throwing a party if so. But if it doesn't treat me and I have to keep looking, at least I can cross this off the list instead of wondering for the rest of my life.

I will be doing my procedure here in the US. I believe many of the overseas clinics are good and safe, but I am just too busy to take a week to go to India. If I am going to visit India one day, it's going to be to look at the wonders of India, not to spend it all recovering from surgery. There are some US clinics getting around the politics of treating MS with the CCSVI/Liberation Procedure by stating they are treating something other than MS when diagnosing a narrowed vein. There are other reasons a person could have stenosis in their veins, and interventional radiology and vascular surgeons have been around for long enough to have their own specialty. There are also quite a few other symptoms that can result from venous insufficiency, and it seems for now, the political trick is to address those symptoms. The surgery is not too risky or invasive, and doctors have been doing angioplasties and stents for years. If the MS improves while treating other direct symptoms, you and the clinic can say, "wow, what a great side effect."

To me, that's a better idea than taking the interferons and when I get flu symptoms we'd say "wow, that's a bad sde effect."

All this really does give some credibility to conspiracy theory though. Understandably the drug companies will fight it, given the interferon drugs cost about $1500-2000 a month and once people are on them it’s pretty much for life. Look at the math. When I first got diagnosed, I calculated I would spend $1,000,000 over the rest of my life ($1,500 x 12 x 50 years = $900k, $2,000 x 12 x 50 years = $1.2m) for the privelige of stabbing myself with a drug that has a known efficacy rate of 40% and an almost guaranteed series of side effects. If 400,000 in the US have it and 70,000 in Canada, plus another 1.5 million around the world, it would certainly appear there’s some financial incentive for the drug companies to resist CCSVI. If everyone in the US and Canada took the drugs, it’s a $10 billion a year medication. Worldwide, it’s another $30 billion.

But there a lot of people - like me - who don’t want to take the drugs or are too sick, or not sick enough, or other variables. Many wait until symptoms are unbearable. There are around 40 large pharmaceutical companies. The whole industry is around $400-$500 billion, and if the various MS drugs are $20 billion +/-, I would estimate these drugs represent somewhere around 3-8% of their total sales. I haven’t done all the research, but I’m probably close.

So the question is…….what’s the motivation behind stifling all these people with MS? History has proven repeatedly that good science will defeat money. Look at everything from Polio to Kodak film. Technology eventually prevails. But it is slow. People with MS are impatient. We’re all seeing a potential remedy for our condition, and many are willing to go to India or Poland or Mexico to undergo a somewhat risky treatment that may not work in all cases. This shows the desperation of MS people, especially Canadians. In fairness, the flip side is they want the science to prevail before the flood gates open.

I’m sure I’ll know more after I have my CCSVI procedure next month, but I would suggest it’s likely CCSVI will be commonplace in the US within 5 years after the science has had a chance to fully develop. It will likely become another alternative for people, but not the be-all and end-all that so many people want it to be (including me). Remember, I am in “good shape” as far as the disease goes. Mine hasn’t progressed too much, and while I can't stand the ways my life is affected by MS, I am pretty aware there are a ton of people with MS who can barely move, or are in such pain they can barely function, or couldn’t survive a surgery because they have so many other health issues. Those people are less likely to be surgical candidates even if the probability of recovery is 90%.

That said, I am pretty disgusted at both the US and Canadian governments for not allowing treatment centers to open up - in a controlled way - and make it so people can get the treatment here instead of flying off to other countries. To me, the 2,000 people who have spent $10,000 to get the surgery ($20 mill so far) in other countries because of their desperation and unwillingness to deal with the politics is a pretty sad statement of the politics itself. If insurance doesn’t want to pay for it because it’s “experimental” and not FDA approved, I get that – liability does play a role in this, as does the opportunity for greedy people willing to prey on us desperate people. But to treat CCSVI like it’s criminal, forcing people to go spend their money elsewhere, is just crazy. All that good science and money is being sent overseas.

MS people are desperate to improve their quality of life, there is a tidal wave of evidence to suggest CCSVI might help them, and we’re sending people overseas to try it. That’s sickening.

As I said, I'm going to go ahead with the testing via MRV and the Ultrasound, and if I have narrowed veins, I will get the procedure. I hope for the best and prepare for the worst like in any surgery (I have been operated on 9 times in my life mostly for baseball injuries, so I'm not immune to it). I need to know if this is will be relief for me or not. Sitting around, stumbing and peeing my pants all day waiting for the government to give the green light when the procedure is something vascular surgeons already do every day just seems silly. I've wasted $10,000 on worse things, and I don't feel like this will be a waste. Stay tuned.

2 comments:

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Megan James said...

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