CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

IMG_0323 “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.

IMG_0320 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. IMG_0302

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.

33 comments

  1. Thank you so much for the honest evaluation. You have every right to feel resentful — it's a human emotion when our dreams fall apart! I've followed your (and other) experience with CCSVI, and I try to be hopeful, but I'm not sure I would go through the procedure at this time. Don't get me wrong — I'm in not-too-great shape with my MS, but I need more guarantees before I have the surgery. For you, and all of us, I hope the research finds the answers we need.
    Thanks, again for this open portrayal.
    Peace,
    Muff

  2. I know it must have been very difficult for you to come to this conclusion, and I'm sorry for that. I appreciate your honestly and continuing advocacy.

  3. I add to the others' appreciation of your honesty. The disappointment you feel is real. It is likely little consolation to you, but perhaps somewhere in you there can be also a sense of satisfaction for having contributed to the knowledge of this area of endeavor which is still in its infancy. I thank you for that.
    Judy

  4. Mitch,

    My first treatment was 2 weeks before yours. I also found it difficult to admit when I began failing. I was disappointed for me, but felt a great responsibility to everyone who was watching. I wanted to do well for all of us!

    I have had my second chance with a more experienced doctor, and as you know, the results are remarkable. I started RR, not PP like you, but I am so glad that you are going to give it another try. As you said, the "opportunity costs are nil," so why not?

    Everyone who reads this should also know that not only is Mitch still involved with CCSVI, he spends countless hours working as a board member of the CCSVI Alliance. We are so lucky to have him on our team!

    Thank you for your honesty and continued commitment, my friend.
    -Nicole

  5. I want to hear everything you have to say..please don't go away…you are so beautifully spoken..I wonder if they checked your spinal veins or azygous???
    Maybe try again with someone close to you (geographically)…I want to see you have something happy happen for you and yours..
    All the very best from B.C. Canada!!

  6. Mitch and Nicole,
    Thank you for sharing your experiences. I think it is as important to share those cases where CCSVI provides little-to-no noticable improvement. MS is a complex disease and while we all pray for the silver bullet that'll cure everyone immediately, there is still so much we don't know. As you say, though, the opportunity cost of pursuing this treatment is comparatively low.

    My mom is also in a wheelchair from MS – she's going to San Diego in October for CCSVI treatment. While I wish for a miracle (getting back on her feet), I hope for more minor improvement (that her left eye and hand will work again), and fear there will be no change. However, even if our worst-case scenario occurs we will have lost nothing.

    Best wishes to you Mitch, and thank you again for sharing your experience and keeping us grounded.

  7. Mitch you give me hope because of your belief in CCSVI; despite your lack of improvments. This reasures me of my beliefs in ccsvi. And unfortunatly no treatment for any illness works 100% of the time. I wish you health and wellness and please keep trying the docs are learning more every day. Thank you for your bravery & honesty.

  8. Hello. I was directed to this blog by the CCSVI facebook post.
    Thank you for being so open and honest. I was diagnosed with RRMS at 19, 7 years ago. I fortunately feel good today and unfortunately have felt very poorly some days. That's life.

    I'm having a hard time with all of this CCSVI stuff. I believe strongly, as you do, that this WILL be a huge game changer in the fight against MS, and that there is great hope in the future.
    But the issue I'm having a hard time with is friends and family expecting me to just go out and get 'fixed'. They don't understand that this is in it's infancy. We don't know the whys and hows yet but we will. Only a select few have had the procedure done and as you said, results mixed (but promising!) and we need further tests and research to figure out why!! (Shame, shame on Canada and the CHIR…. )

    I certainly do not rejoice in your condition or that Liberation did not work for you, but I thank you for being so open. I rejoice in the promise that CCSVI has and while I feel good today, I am happy to take a back seat and let others go ahead of me in line, and pave the way. One day, I will owe a little fraction of my health to each individual, yourself included.

    Some people out there, usually the media included, do nothing but paint a sunny picture and we need to be realists and see this for what it is. Our greatest opportunity… not yet the 'answer' per say, but the road to physical health for all of us.

    God Bless

  9. Thank you so much for what you've written, Mitch.

    Yesterday, my darling man had the procedure. He is also PPMS. Of course, we have hope but he's pragmatic. He told me tonight that, no matter what, he has to find happiness where he is in his life.

    I'm so glad that, despite the fact that it wasn't the immediate answer for you, you continue to be a strong advocate for CCSVI.

  10. Thank you for being honest. We all need to know the whole story. I have had good results, but having everyone's true experience represented helps make it more likely that we will all be able to learn from these early days and keep improving the results for everyone.

  11. Mitch,
    Thank you for your honest and heartfelt words. Hearing this is just as important as all the successes. If I recall, you were one of the earlier patients or you had a specific issue that was uncertain how it should be corrected? I could be recalling other MSers entirely, it's a big jumble up in my brain!

    I have felt from the time I read the percentage that CCSVI was not found in, that those are the people that need to be studied further. CCSVI is a huge piece of the puzzle, but it is not the only piece. I truly hope that this does happen, for you and the many others. I do hope you go back for another round. You never know. They have already learned so much more than they did back in March. I went back for a second and it was found that May Thurner was missed in the first procedure.

    So thankful that you are still so involved, doing so much for all with MS!

    All the best to you!!!

    Denise G.
    aka girlgeek

  12. Mitch,

    I hope that it is just something that was overlooked (or is yet to be discovered). We are learning everyday from everyone who is acting as human guinea pigs, by having this procedure at this stage in its development. We know that there are veins other than the internal jugulars and the azygos which can be affected with CCSVI. There are vertebral veins and lumbar veins that need to be studied, to see if they too are stenosed.

    Thanks for your story, and my your turn to be cured come soon!

  13. Mitch,

    How disappointing for you.

    There is clearly a lot more to learn about how to treat CCSVI and even to prove its utility.

    We all learn a lot more from cases like yours than from 100's of glowing reports that it worked like a charm.

  14. As always, you speak with honesty. Truth is that the "liberation's" benefits vary from person to person. And this is frustrating to say the least. I am at the same place you are friend, i am better since treatment in some aspects but still progressing.
    Hopefully, Pandora's box which Zamboni opened will help us more in the not so distant future. If not, we gave our best.
    Stick with us, you are needed.

  17. Hi,

    If you haven't had one already, insist on an MRV-head which shows malformations of the dural sinuses (drainage pipes for veins in the brain) which can help explain why a liberation didn't work, and, like May-Thurner, these pathologies do not, anecdotally, seem rare in the CCSVI-MS patient population.

    Unfortunately, and perhaps for reasons of practicality, Dr. Zamboni only addresses extracranial venous malformations in defining CCSVI — I hope the effects of intracranial venous malformations on blood flow and restenosis will be researched.

    Best of luck

  18. I think it's great that you posted your story. Have you been scanned since to see if the veins stayed open. I just wondered if you restenosed soon after.

    Again, thank you for your honesty! I am on the waiting list.

  19. Mitch,
    I'm truly sorry that you haven't experienced any improvement since your procedure. Perhaps the most positive thing that can be said is that unlike a year and a half ago, they are learning so much about MS every day. Until the "cure" is found I know that you will continue to advocate for all afflicted. Thank you again for all that you do.

    Charlie

  20. I'm so sorry that this round of liberation didn't benefit you. Perhaps your next catheter venogram will answer why or add more questions.

    The *truth* is, I wish you the best.

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