We live in a world where, if you choose to allow it, things you’re looking for kind of find you…
I don’t mean that in some kind of new-age take on the laws of attraction à la “The Secret“. My version applies exclusively to information I search for on the Internet, though I search for everything there. When I do that, I eventually begin transmitting my browsing history (through cookies) – as an example, take a look at the advertisements that show up on the right side of your Facebook page – if you don’t have a Facebook account, well… what are you using the Internet for? There’s only so much pornographic material that’s actually worth watching! Anyway, to the point; I have begun a more exhaustive search for CCSVI therapies (I know, I’ve already had people ask “wtf is wrong with me?” and why haven’t I laid out a plan to ‘git’er-done’…). It’s not that simple people! It’s an unproven therapy that has mixed results and imperfect surgical equipment. Balloon angioplasty is one thing – proven safe (arguably). I did read about a theory that in performing this procedure, the balloon, once inflated, may damage or rupture the “tiny vein valves” causing further damage. Balloon angioplasty efficacy over the long-term for this type of procedure is, if nothing else, questionable. What appears to happen over time is a “re-narrowing” of the veins. That means the balloons need to be reinserted on some kind of regular basis. Simple enough, right? I mean, if I’m going to the hospital every 30-odd days for my monthly dose of toxic poison (I have begun referring to chemotherapy drugs exclusively by this moniker – I think it’s wonderfully descriptive and 100% accurate), why would it be so difficult to make sure that there’s enough ‘air in the balloons’. Hell, maybe they could even inflate the tires in my wheelchair at the same time.
The ‘imperfect surgical equipment’ I mentioned earlier was in reference to the arterial stents that are sometimes placed in cases where a severe narrowing is present. These are used often in arteries for people who have coronary operations. But an artery’s construct is very different then that of a vein. Arteries are kind of like steel pipe; they’re rigid and don’t flex as much as a vein, whose construct is more like a bendy-straw, comparatively. So what holds steel pipe open will surely hold a weak-little-bendy-straw open as well – but could also wind up causing the vein to rupture, or (worst-case-scenario), follow the blood flow straight to my heart, causing this really bad side-effect known as ‘death’ (though, eventually, the vein will grow around and lock the stent in place – a process called ‘endothelialization’ Say that 10 times fast…). So let’s review my options, shall we:
I can spend between $20,000 and $40,000 to have a trip to a hospital in Poland/Costa Rica/Mexico/The US where they may find:
(b) a narrowing requiring a ‘balloon party’ (angioplasty)
(c) a severe narrowing require stenting
If (a) is true… anger, frustration, and an even greater feeling that I’ve been ripped-off may start to break through the ‘shiny-ball-of-happy’ that is me, possibly even transforming me into a ‘black-ball-of-bitter’
If (b) is true… I might see no change. Or I might see some symptomatic relief (greater tolerance to heat/humidity, clearer vision, etc.) – but the ‘balloon party’ (like any party you’re enjoying…) may end too soon, returning me to my previous state of disability (or invalidity, if you will – hard not to feel like an invalid at times). This is important to conceptualize appropriately – imagine getting better for a few weeks, only to return from whence you came – that, to me, is worse than being sick. It’s a new kind of cruel torture that I have no interest in putting myself through. But it’s the probable outcome if I’m unable to find a doc in Canada to do the follow-up. Certain to transform me into a ‘black-ball-of-bitter’.
If (c) is true… well, the doc suggesting I use the device for a purpose other than what it was intended for may first have to deal with me utilizing it for a slightly different unintended purpose as I shove it straight up his…
So while the prospective way forward may be clear as day to all you fully-ambulatory, summer-lovin’ normies, I have to consider the impacts that the choice will have on my life. And my attitude. And the level of follow-up care available to me. And, and, and…
You know, it struck me yesterday – just because life’s not great doesn’t mean it isn’t good. While I’m growing tired of having to continually adjust my desires and expectations based on how my disease chooses to impact me day-to-day, month-to-month, year-to year, I’m ever-cognizant of the good things in my life. It’s the fuel that fills my tank… so keep the tank full, people!