Wednesday, October 27, 2010

last post about CCSVI

I feel compelled, now that I'm basically 1 - 1/2 years post procedure, to summarize my thoughts on how having the procedure affected me and my disease. A couple of things to start this out with to add framework to the summary:

1) When I got the procedure done, it was SO new. Hardly anyone domestically had done it and we were all hoping that this procedure wouldn't discriminate between the variants of MS (Relapsing Remitting, Secondary Progressive, and Primary Progressive) and everyone would get some of the same results.

2) My realistic goal going into it was that it stop progression at worst and actually make me better second.

Well as far as #1 goes, it does seem to have the miracle stories all coming out of the RR camp. I'm jealous as hell of course, but it also makes a massive amount of sense. I've explained ad nauseum about how, being a card carrying member of the progressive MS club, I feel the miraculous results were not achieved in me because of damage (degneratively caused) vs. inflammation (RR MS). I mean what happens when your arm gets lopped off? You hopefully stop the bleeding and get all fixed up and adapt. You still don't get your arm back. BUT if you have a broken arm, it can heal and go back to normal, or at the very least, regain function. But it is also just as useless temporarily. So I see SP MS as the arm lopped off scenario and I see RR MS as the broken arm scenario. Analogy boy strikes again.

As far as #2 goes, the book is still out for me on that one. I mean I've obviously decreased in function a bit (duh, I just retired!), but it just feels SO different. Very slow for one thing and I'm still far better off than I was before I went out to California in terms of overall wellness and just how I feel at rest. I have alluded to what I think about how aging with a compromised nervous system could just be a faster process than aging with an intact one. I mean it's like the insulation has been stripped from the wires (nerves). Those nerves just have to naturally age faster than their healthy brethren, no? Analogy boy needs to speak again.

To me it's like rust on a car. While your paint job (the insulation!) is very intact, your car looks the same for a good while. Scratch the paint down to the substrate and what do you get? Rust of course. What happens once that process is started? It goes batshit unless you REPAIR it. So the story I'm sticking to right now is that my nerves are like a shitty paint job. They are aging much faster than ones where the paint is intact. So since no repair mechanism was put into play, I took the car out of the acid rain, but I still have rust and the sun (the aging process) is still just killing my paint job!

So do I think it "worked"? YES I do. But for me, it was more like an event. We just shut off the spigot of damaging forces, but the damage is still there. Those of you that read this blog will remember my drywall analogy in the flooded house. I still think it's true. So I had some almost immediate improvements that are still there. If my MS was 'active' those would probably have reset and been overtaken by progression. I do think it worked, but I think my MS was too far down the road to start dancing and jogging again, but I think it kept me from plunging down the rabbit hole at breakneck speed. Those who personally know me may or may not remember me a few years ago, but I was progressing pretty rapidly. So I'm a big fan of the 'liberation procedure' and will continue to expose people to it as the best thing going for MS. To me, MS meds are shit. Plain and simple. They didn't work on me and they pretty much suck for everyone else whose MS is in the "it's starting to actually affect my daily life" camp. I would have sworn to you that Avonex was working on me for the first five years or so since I didn't have daily life affecting MS. Unless you're progressive out of the chute or have an aggressive case, most people have many good years post diagnosis until the disability starts to accumulate. Back in my very first post I talked about how I was on the cliff of home modification, life modification, whatever. Well since I was on that edge, I think the rust is still continuing since it had already started, but not like it was. To me, for right now anyway, I'm just aging with a severely compromised nervous system.

There are other things that aren't all glittery about this procedure to be sure. My neck still hurts like hell in certain positions (and probably always will). I can absolutely send myself through the roof if I swallow while looking down and having my chin pulled back a little. That's the stent knocking into something I'm sure. But I'm glad to have the stent. My jugulars will stay open because of it and I just need to not use that position that hurts!

So I'm wrapping up this chapter of this blog. I may not post for a while as I'm thinking about writing in other areas for something to do. I just have not had anything new to report about "My hopeful journey into actual MS recovery" for a while. Now it's just trying to make it from this point on. So this thing has more or less become obsolete to me. I am probably going to keep it open, but I'd like to change the name to one that's less than 100 characters or so! Thanks to everyone who read about this journey, your support was invaluable. I'm still here, still kicking (as hard as I can!), and still fighting this battle against an opponent I know I can't beat.

I'll probably actually post a lot more now that I'm retired because daytime TV SUCKS!!


  1. Someone posted about T cell vaccine at thisisms today and I thought of you. I hadn't heard from you in a while and thought I'd check your blog.

    I'm glad to hear you feel that progression has slowed but I'm sorry to hear you feel that progression continues and that you found it necessary to retire.

    Then again, everything considered, retiring is probably the best way to improve your QOL in that you'll be able to spend more time with the family and maybe have it be higher quality.

  2. Well, well, well,CHEERS.

    You have gone where no one had gone before.My analogy boy!!!

    I hope "science" will offer you and all blocked veins sufferers a better treatment soon.

    In the mean time, make friends with your "opponent".

    Daytime TV does suck.

    Le Gaiagenaire


I've figured out how to get everyone to be able to post on here.