Multiple sclerosis, Struggles, Treatment

CCSVI’m confused

I’m not a doctor. I don’t play one on TV, either. So to say I’m flummoxed by multiple sclerosis, in a clinical sense, is an understatement.

Which makes me like most laymen, but also those like above-average doctors, who have been searching for a cause/treatment/cure to MS for at least 150 years and have yet to make a breakthrough.

Let’s dispense with the medical jargon. I don’t want to type it and besides, I doubt anyone except those with MD after their name will care.

I grasp the underlying concept of MS — my immune system has gone haywire and is attacking itself. Cannibalism, as another MS blogger calls it.

I also get what my interferon treatment is supposed to be doing. Bottom line: It won’t stop MS, but it might slow the progression, and it reduces flare-ups. In about a third of the people who use it. Not great odds, but better than nothing, right?

I went with the treatment because it has been on the market the longest and it is billed as pretty aggressive, especially if you “catch” MS early enough. But it is in no way the fix. MS seems to march on regardless of treatment, slowed, sure, but determined as hell.

Enter CCSVI, or chronic cerebrospinal venous insufficiency. Essentially, blocked veins lead to inflammation which leads MS, or so the theory of Dr. Paolo Zamboni goes.

(He’s Italian, so I’m sure Zamboni is a pretty common name, but I can’t get over the idea of the ice resurfacer at hockey games and what that could mean for my neuropathways, scraping the bad stuff away to reveal a new, shiny surface for my electronic pulses to glide along).

There is so much controversy swirling around his hypothesis and the angioplasty treatment, which he has euphemistically labeled  “the liberation procedure.”

Yes, we’re all freedom fighters here. As though my myelin sheaths are being oppressed, and there’s a genocide taking place in my body and these tiny balloon battalions come in to save the day.

Actually, I kind of like that analogy, because it’s the only way I can make sense of all the medical mumbo jumbo. But does it work?

I’ve done enough research to know that the treatment is a gamble. I don’t know that I can weigh in much more than that, although plenty of others have.

And then I heard this on NPR on the way to work.

All MS treatment is some sort of gamble. We read the risks and then do it anyways because we hope against hope that it will improve our quality of life, that it will stop the progression, that it will keep us moving for at least one more day.

Would I do something with more risks, but with the possibility of a greater reward?

I’m not in a wheelchair. Maybe I will never be. But it’s a reality for many with MS, and it’s something that will always be in my mind and inform my decisions.

Right now, I’m comfortable with my level of treatment and ability (as comfortable as anyone with MS can be, I suppose). But if my situation were different, I’d probably consider more drastic measures.

Including the Zamboni technique? Probably not. But then, I don’t want to rule anything out.

3 thoughts on “CCSVI’m confused”

  1. i’ve read quite about CCSVI…. and at this point in the game i see no reason to research it for myself…

    i don’t consider treatments that have higher than average risks right now… i’m taking Copaxone… i’m treating my symptoms as they need treatment (drugs)… and that’s about it… for me Copaxone was the best choice because it has the least amount of side effects and it scared me the least of all the CRAB drugs

    i can’t see becoming involved in any trials or controversial treatments…. if i were in a chair, completely immobile and a bit further along in life, i would probably consider some of the riskier ideas… but for now, i’m getting by pretty well for the most part… the best i hope for now is to have more good days than bad, to slow the progression of the MS… and to live my life in the now…

  2. I’m right there with you. Especially on your last sentence. It’s so tough to live in the now when I dread what lies ahead. But I have to try.

  3. Jenn, I wrote a post about this topic a while ago. For me, I need more info and proof before I undergo the procedure. Yes, the battle rages with pro and con posts all over the place. I prefer standing on the sidelines and waiting until I KNOW it will work.

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