Wednesday, April 6, 2011

CCSVI - Round Two: Did It Work?

How do I feel now?

I feel exactly the same as I did before the CCSVI treatment. In fact, I felt completely “normal” within a few hours of the procedure. No side effects. No improvements.

This double edged sword is all too familiar to me. I've undergone so many treatments, and have ingested and infused countless drugs over the years. On the one hand I rarely suffer any of the side effects. On the other hand I never experience any of the benefits.

Did it work? How can I tell? When can I tell?

I don't know yet if this round of CCSVI treatment worked. I’ve always said that for my particular type of MS it may take up to six months to determine the success or failure of the treatment. My primary goal is to slow down or stop the progression of MS, and it just takes time to figure out whether or not that has happened. The damage already done to my central nervous system is not going to heal overnight, if ever.

Was it worth it?

Given that I had no other treatment alternatives, and given that the speed of my disease progression does not afford me the luxury of being patient, and given that venous angioplasty is relatively safe and painless, yes, it was worth a try, even if I never see any benefit from this procedure. It is satisfying to do something, to throw a punch in the fight, to go down swinging if I must go down.

Then again, it could turn out to be the best decision of my life (other than marrying Kim or outrunning those cops in ‘84). I just can't tell yet.

Will I ever do it again?

Possibly. Probably not. I don’t know, maybe.

I might go back for more if I want to try to improve blood flow through my left internal jugular vein, which has a muscle impinging on it from the outside. There is no clear treatment protocol for this condition. Placing a stent inside the vein is one option, but it's not a great option. We can't know how the stent would react to the pressure from the adjacent muscle bundle. Would it keep the vein open? Would it collapse or fracture and make the situation even worse? You might ask though, what could be worse than almost no flow through a vein?

I also have to consider the possibility that perhaps my MS isn't associated with poor blood flow out of my central nervous system at all. I've tried CCSVI treatment twice now. I'm considering a third, more elaborate and risky treatment. When in this process do I stop chasing something that might not be there for me? I don't know. I need to think about that some more.

Of course these decisions are made in the context of my unrelenting decline. If I wait too long to make decisions, or if I wait for the science to be completely vetted before proceeding, then I will incur significant, permanent neurological damage in the interim. This drives me to be aggressive in my decision-making, and compels me to adopt strategies that others might consider risky, desperate, or otherwise ill-advised. But time is not on my side, and my options are few.

Final Thoughts

What I've been through, and what I'm sharing with you here, is not a testimony one way or another about the theory of CCSVI. Rather, this is simply a rendering of my personal narrative. Mine is only one of thousands of CCSVI stories, and the fact that I am sharing it with you here is not meant to imply that it is more important, representative, or valuable than anyone else's story. It’s just that I have this blog, and lacking enough insight or imagination to do otherwise, I keep writing about myself. 

Yet when I examine the entire body of (mostly anecdotal) evidence regarding CCSVI and MS, I am encouraged.  I hope that CCSVI treatment continues to be a life-changing experience for many MS patients. 

I am moved by the outpouring of love and support I continue to receive from my friends, loved ones, and the online MS community. I can’t thank you enough. I'll update this blog from time to time, regarding my CCSVI experience, but don't look for any YouTube videos of me doing jumping jacks.

Despite the uncertainty of my future, I’m doing okay.  I’m rarely able to sleep late in the morning, not because I have urgent matters to attend to, but because I simply can't wait to get up and start my day.  Life enchants me.
 

To read the other five blog posts about my March, 2011 CCSVI treatment, click here and scroll down.

.

3 comments:

  1. Mitch, thanks for your frank discussion of this controversial subject. I'm leaning toward it, but I've not fully decided. I believe that I, too, have PPMS, while I formerly thought it was SP. So, I, likewise, have few treatment options. Keep us updated, and thanks again.
    Peace,
    Muff

    ReplyDelete
  2. Hi Mitch,
    Thanks for sharing your story and good luck in your searh.kp
    love
    Herrad

    ReplyDelete
  3. We totally get it Mitch. Thank you, truly, for your grit and joie de vivre.

    Your friends in Freeport

    ReplyDelete