“The truth does not change according to our ability to stomach it.” – Flannery O’Connor
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.
Mitch,
I am always amazed at how well you handle things that would crush mere mortals. You are still, and always will be, someone I aspire to be like in terms of my outlook. God bless you dude!
Lew
Thank you so much for your supportive comments. I'll be sure to update you when I have a follow-up venogram.
This post generated way more interest than I had expected.
These are exciting times in the MS world!
hi Mitch. in just the last 10 months of this infancy stage of CCSVI , we need to remain positive as you do. we need to iron out and tweek the difference in each one of us as individuals with MS. it ain't going to happen over night with success for us all. it will take studies, time and a little more research. it took so much time with neurologists to find not very much. we have at least 2/3 feeling something within only 10 months of preocedures going on. I believe at least now we have a much better idea where we are heading. an imagine once everyone gets on board. thank you for everything and your experiences and your frame of mind in trying this new procedure. your a tall man in my eyes in every way possible. we will make this happen for all. God bless. joe
FINALLY! I have been saying that not only the good results should be known, but also the "not so good" results, because this is reality, because this is honesty and because this makes it more real…
Thank you.
Suzie
FINALLY! I have been saying that not only the good results should be known, but also the "not so good" results, because this is reality, because this is honesty and because this makes it more real…
Thank you.
Suzie
Bless you for your honesty.
Mitch
Thank you for being a pioneer for this tidal wave that is brewing. Your story is an inspiration to read….which I did awhile ago from the beginning.
This did not work for me but I remain optimistic that there is something here in our physiology that must be researched for an MS cause.
As Helen Keller said:
If I regarded my life from the point of view of the pessimist, I should be undone. I should seek in vain for the light that does not visit my eyes and the music that does not ring in my ears. I should beg night and day and never be satisfied. I should sit apart in awful solitude, a prey to fear and despair. But since I consider it a duty to myself and to others to be happy, I escape a misery worse than any physical deprivation.
Karen
There's a lot to learn and thanks for sharing your story with us in an honest and forthright manner. Look forward to updates. =)
krista anne
thank you for your honesty. tears in my eyes but love in my heart. you are brilliantly brave here. the truth hurts sometimes but the unknown/ignorance hurts more. thanks for bringing some of the truth into the open for me.
Mitch,
Back when I was diagnosed as Atypical MS (before the Canadian documentaries when CCSVI really took off), I spent a lot of time reading the literature about it and contacted one of the few docs doing the procedure.
This summer I was invited to participate in a CCSVI study. I had to tell them that my MS diagnosis was disputed although I have other progressive neuro issues as well as venus drainage issues from brain surgery. But, understandably I was not qualified for the study. Quite a bitter pill.
However, my hope is that they will be able to narrow the factors in determining who is/is not a good candidate for CCSVI treatment. I believe that down the road it may also provide relief for some of us other neuro patients too.
I'm sorry that it hasn't been effective for you Mitch. However, it is important that you share your experience. Thanks for contributing to the developing of the body of knowledge about this.
Best, Donna
Thank you, Mitch for your detailed & kind comments. I have had MS for 30 yrs. and was tested & treated for CCSVI a couple weeks ago in San Diego. Maybe it's too soon to say, but I have NOT noticed improvements. The IR said I had problems he couldn't help, even tho he gave me 3 angios in my jugulars.
Thank you for sharing your experience, & for your continued support as well. Love, peace, & best wishes to you!
Thank you very much for your honest writing. I have RRMS and am scheduled for a venogram. I appreciate the ability to go into the procedure with as much information as possible, and I too am trying not to "obsess" about it, as you said in one of your posts.
Best of luck to you–and thanks for your blog.
Kathy