Wednesday, July 20, 2011

CCSVI- My Journey Comes to an End

“Operator, give me the number for 911!” Homer Simpson

Yesterday, I visited Dr. Gary Siskin's office in Albany, New York to follow-up on my March CCSVI treatment.

I just did a count. This is my 40th CCSVI post. Don’t believe me? Click here. For my new readers, at the bottom of this post* is a brief overview of CCSVI, and my involvement with it. For the rest of you…

On the drive to Dr. Siskin's office on Monday, I posted the following status update to Facebook (don't worry, my wife was driving):
“In Albany for CCSVI checkup tomorrow.”
In retrospect, that was a mistake. I knew that this was a routine visit to simply confirm what I had expected all along – that CCSVI treatment didn't work for me, and that I've exhausted all reasonable avenues for treatment. I only meant to indicate to my Facebook friends what I was up to for the next couple of days. The comments to my post surprised me, although they shouldn't have. People wished me luck. They were hopeful and encouraging, even some with prayers for a positive outcome. I’m still learning how to maneuver in this new world of social media, but the lesson I learned on Monday was that you don't put up a message that is so cryptic that it causes your friends and loved ones to have false hope. If I had it to do over again I would not have posted at all, or maybe I would've posted a YouTube link showing cute kittens.

On the other hand, it certainly is nice to know that so many people care and made the effort to wish me well. I am blessed in that way. Thanks for all of your supportive comments, and I apologize for leading you astray.

But the bottom line is this. Dr. Siskin and I both agree that I fall into that one third or so of MS patients who show no positive benefit from CCSVI treatment. His ultrasound examination on Tuesday revealed that I no longer have poor blood flow in my jugular veins; I no longer have CCSVI. Yet, I’ve seen zero improvements in my condition in the 16 months or so that I've been treated (March of 2010 by Dr. Sclafani and March of 2011 by Dr. Siskin). In fact, my condition has continued to deteriorate at about the same pace as it has for the past 10 years. Dr. Siskin politely and reluctantly discharged me from his care.

03 07A quick aside for some of the more seasoned CCSVI readers – I realize that the ultrasound test does not measure blood flow through the azygos vein. However, both Dr. Sclafani and Dr. Siskin thoroughly ballooned the azygos, even though there was not strong evidence of a restriction.

And so ends my personal CCSVI saga. I need to move on and stop chasing something that clearly is not the answer for me. Sure, I'll continue to monitor the progress of CCSVI treatment and research, and if new information comes to light that may impact my situation I won't hesitate to revisit CCSVI. But my instincts tell me that this will be years down the road, if ever.

I remain optimistic that CCSVI is a significant factor for many patients with multiple sclerosis. I will continue to support the MS community as we search for answers about exactly how CCSVI and MS are related, and how MS patients can benefit from treatment.

In return, all I ask from the CCSVI community is that you don't forget us- the significant population of MS patients who simply don't benefit from CCSVI treatment. Don't lump us in with the naysayers who consider CCSVI theory to be bogus. That's not it at all. Also, please don't make broad and unsubstantiated statements like "CCSVI is clearly the root cause of MS," or "nearly every MS patient who is treated sees some benefit,” at least until more research supports such statements.

Don't worry about me. I'll be okay. If you need something to worry about, here's a list of ideas:

· Republicans taking over the Senate
· Democrats taking over the house
· just about any politician you've ever heard of being elected president
· global warming
· the Yankees signing the entire starting lineup of the American League All-Star team
· your cell phone going off at a funeral, with your AC/DC “Hell’s Bells” ringtone at maximum volume
or, my personal favorite…
· arriving at work only to realize that you forgot to wear pants

*Quick overview of CCSVI:

Dr. Paulo Zamboni, an Italian vascular surgeon, has proposed and supported the theory that restrictions in the veins that drain the brain and spinal cord have a significant causative relationship to multiple sclerosis. In fact, when he used balloon angioplasty to treat these restrictions, he found that many patients not only stopped getting worse, but actually started getting better. Thousands of patients around the world have since been treated by a variety of clinics. For a thorough discussion by a panel of expert physicians, click here.

I've had this treatment twice – once in March of 2010 and more recently in March of 2011. CCSVI theory has stirred significant controversy in the MS world. Many patients and advocates demand meaningful research and immediate availability of treatment. The neurological community, the doctors have traditionally treated MS patients, are highly skeptical and either dismiss CCSVI theory altogether (which troubles me greatly), or want to proceed at a very deliberate pace, delaying benefits for patients by many years (which I don't like, but I get).

For more information on CCSVI, visit CCSVI Alliance.

24 comments:

  1. You were thoughtful to the end of this journey that you shared with us. I am sorry it did not produce better results for you, but hope that some day, sooner rather than later, a suitable treatment option will emerge for you.

    Judy

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  2. Mitch, at least you have proper blood flow. That is all we can ask of this procedure. That is all I asked before starting this journey. I haven't noticed any significant improvement either but it's only been 3 weeks. Keep getting your veins checked!
    All the best,
    Leslye

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  3. You said: "all I ask from the MS community is that you don't forget us"

    Don't worry about that. It's not like the rest of us are all getting CCSVI treatment, getting cured, and aren't concerned about MS anymore.

    The mystery of MS is just starting to be solved, and once they really get in there I'm pretty sure the discoveries will apply to you as well as the rest of us.

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  4. You have a contagious spirit...that's a good thing!

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  5. I can totally relate to your situation. I was treated by Dr. Mondato August 24th of last year and I'm feeling a similar lack of results as you. keep in touch.

    Jonathan

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  6. Your list of things to worry about made me laugh right out loud.....and that's the best medicine I can think of for anything!

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  7. Thank you for sharing your journey. I, too, have had minimal improvements from my 2 CCSVI treatments, but I agree with you 100%; I believe it is part of the MS mystery puzzle, not all of it. I absolutely support anyone with MS receiving treatment for CCSVI on the chance that it may improve symptoms. I enjoyed your list at the end of your blog. You're a great writer and enjoyable to read!
    Take good care,
    Kathleen

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  8. So..Mitch
    you are still on my journey
    CCSVI success or not 'cause I have to keep you always please my friend
    your words and humour bring me joy
    we are "snowflakes"
    peace man
    Ruth-Ann in BC Canada

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  9. I was the 50,693,562 viewer of cute kittens which is a testament to one of many of your followers. I might not be physically dancing but I am dancing in my imagination because for the first time I am experiencing hope that finally there is a real piece to the MS puzzle that we are all sharing. Looking forward to your next blog.

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  10. I am one of those who chose to wait for the clinical trials to be completed but have kept myself informed as to how CCSVI is playing out. Your blog is the best I have ever viewed and I thank you for that. As I recall, dancing is great, but having your feet stepped on hurts! Keep laughing - it is the best medicine!

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  11. Judy,

    I appreciate and share your hope, but I'm growing less confident each year.

    Leslye,

    I agree that this is all we can ask of our doctors, but it's not all we can hope for from the procedure. Good luck!

    Matt,

    You are so right. In fact, after reading your comment I tried to revise my post a little, but my friend Google won't let me...that's not good.

    Nicole,

    If I'm contagious are you sure you should even come near me? :-)

    Jonathan,

    I'm sorry to hear that it hasn't worked for you. We tend to be quieter than the success stories, so some people don't realize what a large group we are.

    Daphne,

    I was serious about the Yankees.

    Kathleen,

    Well said, and in 800 fewer words than me.

    Ruth-Ann,

    I'm glad you enjoy my little blog. Take care.

    Karen,

    As I've written before, I predict that, when all is said and done, and that will be many years from now, CCSVI will be one of the most significant pieces of the MS puzzle...just not for all of us.

    Maryann,

    Thanks for the compliment- but you know, I never really liked dancing anyway :-).

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  12. Thank you for your honesty and for not jumping on the naysayers' bandwagon. For recognizing that just because it isn't the answer for you, that doesn't mean it can't be the answer for others.

    You've raised my hope in humankind.

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  13. I wish you all the best in your future exploration.

    I would add 2 possible ideas to view: Low Dose Naltroxon and the other is Ondamed (ondamed.net). I treated my friend with this frequency machine and in 2 weeks she was able to go from walking wiht a walker to pacing and swinging her arms....but it only held for a month - her headaches stopped as well - you can find a practitioner near you I am sure.
    I wish you all the best.

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  14. I am also in the same boat as you and so is my sister, It has come about 21/2 years too late in my case as that is when I was determined to have become SPMS, I am at once pissed and sad, as this didn't have to be. We are too valuable as long as we are RRMS. I am also still a believer in CCSVI but feel that the benefits are more for RRMS so I firmly believe that the new DX'd are the ones that we have to get the word out to! So, as long as I can keep being at the computer I will keep banging the CCSVI drum!

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  15. Mitch - thank you for sharing your journey with us. I too had minimal results from my CCSVI procedure but I still believe it is a valuable treatment option for those that want to try it. I hope you will continue to advocate for others, as you have been. That is my intention as well. I've seen people have amazing improvements and if it didn't work for us it may work well for others. Live strong - you are an inspiration.

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  16. Thanks for sharing your journey, Mitch. You turned over every stone, not once, but 40 times. That is more than most people are willing to do. When the diagnosis of MS was made on me almost 6 years ago - I wanted the world to know that I was a "stone turner overer". We have to give it our all and you surely did.

    Bless you for giving it your all!

    Jill

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  17. Hi Mitch, It worked for me twice, but the third time the veins were open but symptoms came back. It was hard to let go of what had been a promising solution twice before, but them's the breaks. Good for you, enjoying the ride (after the Grateful Dead song I presume?)

    Laura

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  18. This is the first time I've seen you're blog and am so pleased that someone posted it to their wall so that I could read it. I have a few friends who are in the same position as you and when they ask me for advice on whether I think they should have the procedure I hesitate each time. I went for my procedure a year ago after having RRMS for at least 8 years. I was fortunate enough to have really good results and this is what they see. I explain to each person that I don't know if the procedure will work for them, I only know that it worked for me. I also know that the logic of who it works for makes little sense. I explain that for 1/3 of the people it does not work at all. 1/3 of the people it shows some improvement and 1/3 of people it shows really good improvements. But I know people from each stage of their MS and with some, the stage didn't matter.
    What it all comes down to is, we each have to make our own decision at this point and hope that somewhere down the road our MS friends who come after us will have better answers than what we do.

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  19. Dear Mitch:

    I'm so sorry that CCSVI didn't produce the good results for you that many of us have benefited from, including myself.

    I appreciate your thoughtful blog and your total honesty about CCSVI-- and the good and bad points about it.

    Unfortunately, there are some who have had little to no benefits from the CCSVI treatment, but at least you know your blood is now flowing correctly.

    For me, diagnosed in '98 but living with MS for many years before that, the treatment has helped in many ways and I do consider it to be my own personal miracle.

    I can do a lot of things I could never do before I had the CCSVI treatment, and I am and will be eternally grateful for the progress I've made, but I'm by no means cured.

    I believe that CCSVI is just a new and more effective treatment that often helps of the debilitating symptoms of this stinking disease, but NOT always.

    I so admire your courage and tenacity. Thank you so much for being an MS advocate for all of us. You have helped many with your inspiring words and winning attitude.

    God Bless you and keep you as you continue to Enjoy the Ride!

    Blessings,
    Nicki

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  20. I am sorry CCSVI did not work yet great for you, for me it has been a miracle blessing. Thanks for not dismissing it out of anger.

    I have friends that it works for and some that their veins are so damaged that they are no longer fixable. I will continue to fight for you and all ms patients until there is an answer for ALL OF US.

    Keep up the battle, we will ALL beat this someday!

    Sincerely, Bill Sullivan

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  21. BJ,

    There is hope for humankind!

    Anonymous,

    I did try LDN, to no avail. I've never heard of the other treatment.

    LaVonne,

    This is a conundrum. The more recently diagnosed people are probably the most likely to benefit from CCSVI, yet the least likely to take a chance on an experimental treatment. There are certainly some exceptions – it depends on your personality.

    Andisue,

    Thanks for supporting CCSVI. I think you've got the right attitude!

    Jill,

    Better to be a stone turner-overer than a stone thrower, right? :-)

    Laura,

    No, I'm not a deadhead! Sorry to hear that your treatments didn't hold the third time.

    Anonymous,

    You are correct. Even if we fail, those of us who are pioneers are serving the broader MS community. That is some consolation.

    Nicki,

    Thanks for dropping by and commenting. It is these success stories like yours that keep me excited about CCSVI in the long term.

    Bill,

    Ditto to what I said to Nicki. I am both happy for you and jealous of you!

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  22. Very well said. You are a very brave, and wonderful spirit, and, although it has worked for me, and I have PPMS, most likely, I, for one, will not forget those for whom CCSVi treatment does not help. At least you have healthy veins! And, who knows, maybe that is doing something positive for you that you don't even know about. You certainly saw the best docs.

    Excellently written. Why didn't I see this sooner? XO

    Stacy Saman

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  23. I stumbled upon your blog today...I read your profile and your latest post. A bit of a background - I am a recently diagnosed mser (RRMS) and it has been easy on me so far. But reading about what you have to give up in life because of MS, makes me feel bad - Keep up your spirits: you are an inspiration for people like me to enjoy life with what we have instead of regretting what we had to give up.

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  24. God Bless you and keep you safe. You are still a hero to many and a good friend to a lot of people. We admire you and thank you for all that you have done. Continue your search, and I pray that something will come along that will be of benefit to you and the many others that this procedure did not help. I still look forward to your posts.
    THANK YOU AND GOD BLESS!!

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