Here’s a bit of truth: CCSVI treatment didn't work for me.
I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.
This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.
So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.
Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.
I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.
What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.
If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.
I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence.
Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.
Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.
Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.
And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.