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The world is a tragedy to those who feel, but a comedy to those who think. – Horace Walpole
My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.
So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).
I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.
I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don’t know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.
Given this, what do I believe should happen next? I’m glad you asked.
I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I’m not exactly sure what I mean by “tested.” Relying on the run-of-the-mill MRV and ultrasound examinations isn’t the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.
I believe that every MS patient on the planet who shows evidence of CCSVI should be entitled to have it treated by a method agreed upon by patient and doctor. This might include stents, angioplasty, open surgery, etc.
I believe that CCSVI is the most promising area of research into the root cause of multiple sclerosis, and should be funded accordingly. I’m not (yet) calling for all other research into causes and treatments to stop, but our emphasis should be on CCSVI. Today, the percentage of MS research dollars allocated to CCSVI is grossly disproportionate to its potential benefit.
Given this, what is my commitment to the CCSVI cause? I’m glad you asked.
I personally commit to furthering the cause of CCSVI education and research. One of the ways I will do this is through CCSVI Alliance. They will be launching their website at http://www.ccsvi.org/ soon. I’ll also continue to advocate for CCSVI research and education through this blog. I’ll promise to speak about CCSVI with every MS patient or professional who will listen to me. I will commit to share my images, data, and personal experiences about my CCSVI diagnosis and treatment with anyone, anywhere, any time.
I need to thank a few people for helping me along the journey that culminated in my treatment for CCSVI on March 17, 2010:
- Dr. Sclafani, Holly Barr, and the rest of the team at King’s County Hospital Center for taking up the cause of diagnosing and treating MS patients who have CCSVI, and for taking such great care of me while I was a patient there.
- Drs. Zamboni, Schelling, Simka, Dake, Haacke and Zivadinov for advancing the cause.
- So many other doctors around the world who, although less well known than those listed above, are also studying CCSVI, and performing diagnosis and treatment of patients.
- My primary care physician, my neurologist, and their teams including Judy and Rebecca, all of whom supported me.
- Patients and patient advocates like Jeff and Joan Beal, Marie, Sharon, and others who become true leaders in the CCSVI/MS cause.
- My personal MS friends who I have spent countless hours discussing this with, including: Marc, Neen, Cheryl, Barbara, Kimberly, Lew, Al and so many others, and especially the group of MS patients who took the initiative to recruit Dr. Sclafani to the CCSVI cause.
- My two fierce angels, who befriended me and then introduced me to Dr. Sclafani- Michelle and Randi. Both have hearts of gold, but as a matter of both gratitude and self preservation I’m going to do my best to never get on their bad sides.
- My father, my two brothers and their wives, my two wonderful children, Kim’s parents, and all my other friends and relatives who have given me so much support, not only during my CCSVI adventure, but for the past 8½ years that I’ve battled this disease.
- My late mother, for all she taught me about living a disabled life with grace and dignity.
- And most of all, Kim. Words cannot express how grateful I am that I share my life with you.
Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?
That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I’m going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.
To see all of my CCSVI Diagnosis and Treatment Log Entries, click here.
Postscript: I apologize for the barrage of clichés at the end. Sometimes you just can’t improve upon time-tested wisdom. Regarding the future of this blog, I have no plans for it to become the CCSVI Channel (we are launching CCSVI.org for that purpose). CCSVI will certainly be one of my more common topics here, but I will make an effort to re-broaden my perspective to include more general topics about living a disabled life. For example, check back in late April to read about, and see some pictures of, what it is like to go on a Caribbean cruise in the iBOT wheelchair. Hint: although I will derive satisfaction from blogging about the cruise, just maybe that’s not the only reason I am going on it.
I am so pleased that there are people like you who are willing to test the waters and open doors into a new realm of thinking about this horrible disease. You are truly remarkable. I admire your determination to keep pursuing new options. You are going to be a wonderful asset and advocate for this cause. Great Job Mitch!
Mitch,
I'm with you. It took a while but I'm more convinced of a connection than ever. Count me in on your quest to further the cause.
I look forward to hearing about your cruise, especially in your iBOT. I've done the Caribbean a few times myself but never in a wheelchair. Maybe I can go again!
Charlie
Personally I do believe that CCSVI makes too much sense to ignore. BUT that does not lessen the fact that we all must live each day to the fullest and not wait for that "something" to come along. Best wishes to you and your family.
hi Mitch,
my name is Ceci. i was just treated in Poland last week. Thank you for the thoughtful post on your blog. I have a similar saying to your "hope for the best, prepare for the worst" It feels good to say "hope for the best, but do not fear the worst."
Just food for thought.
good luck to you!
-ceci
I vote "Live like you're cured". At this point you have nothing to lose.
Have a blast sailing the Caribbean.
Rae,
Thanks for the kind words. My actions are not completely altruistic though. I am also motivated by something between urgency and desperation.
Charlie,
Welcome to the CCSVI club!
Anonymous,
You've got it right. Life is a balance between looking ahead and living in the moment.
Ceci,
Congratulations on your liberation in Poland. I like your "do not fear the worst" philisophy.
Weeble,
Well, that cuts right to the chase. If I change my approach to life, and all of a sudden start living as if I'm cured, and then I later find out that I'm not, I'll suffer disappointment. That's not good. But, you are right. If there are parts of my life that I'm living as if I'm sick, I just need to purge them- they serve no purpose.
Thank you so much for your excellent words of encouragement to all of us suffering with MS. I now have hope that by the time my kids would get this terrible disease that in North America it will be our right to get tested. Live well and enjoy the Carribean.
Val
Mitch,
This entry touches my heart. Perhaps that is the answer to your "trick" question…to continue to live your life with heart in an imperfect body. Meeting you was a teachable moment of heart for me.
As one of the lucky ones to have had venous angioplasty, I can do no less than commit with you to reach out and support the efforts of the CCSVI Alliance. Hopefully some day soon, it will become easier for all of us to find answers, help, hope, and our own inner grace in the process.
Barbara
I am inspired by your journey. I have applied for a study and am waiting for an answer. I have MS and so does my 27 year old daughter so this is the most hopeful news I have heard since my diagnosis! Thank God for folks like you and your team…..waiting for my opportunity……keep us all posted.
You have a way with words, my friend. You summed up how many of us are feeling about testing, the need for more research, and yet our personal urgency that can't wait!
I look forward to the day that the Alliance finally goes live. Thank you and everyone for putting so much heart, soul, time, and energy into it.
Nicole
Vhoenecke, if CCSVI theory stands the test of rigorous scientific scrutiny, and it is undergoing that scrutiny now, this will be a wonderful thing for the next generation.
Barbara, well said, and thanks for the committment to the cause.
Terri, although MS is not supposed to be a hereditary disease, it sure shows up that way quite often (not in my family though). Good luck with your study.
Nicole, you are right. We need a parallel path- testing and treatment now for people who's venous system is not draining their brain and spinal cord correctly (kind of important organs) coupled with more clinical trials to more precisely establish the relationship between CCSVI and MS
Mitch,
That was very well written and said in a previous post you summed up very well how many of us are feeling. You also brought up a point that hits close to home for me too; How does CCSVI relate to Primary Progressive MS?
Thanks for being such a great advocate for CCSVI testing. I am researching this for my daughter, and I hope it proves to be a solution for many. A great message– thanks again, and I hope that you will see improvements soon. (prairiegirl)
Thanks for all that you've done here- sharing every step of your journey. It's wonderful.
My fiancee has PPMS, and we are starting down this road. I'd love to hear updates as to whether you are noticing any differences since your treatment now that some time has passed.
Two questions that I have: is the Liberation Treatment less effective on PPMS patients because not all of the affected veins can be cleared, or because buildup recurs faster, and stenting is required? Or that the procedure needs to be repeated after a while?
Thanks for the reminder to be *grateful* for what is, and to not lean too far into wishful thinking.
Cecilia
Cecilia,
Thanks for commenting.
About 9 weeks after my treatment I have noticed no improvements and I have noticed no disease progression. So, it remains too early for me to comment on whether or not I think that the CCSVI procedure was helpful for my PPMS.
I'm not convinced that the liberation treatment is not effective for PPMS. The criteria for success in Dr. Zamboni's study was "improvement". Those of us with PPMS, at least in my opinion, should not be looking so much for improvement as for cessation of disease progression. That has not been measured yet.
You do mention some potential obstacles for PPMS patients, and for all patients frankly. Dr. Zamboni found that there is more azygos vein involvement with PPMS patients than with the other forms of MS. He also found that the azygos vein was more likely to stay open after angioplasty than the other veins. Therefore, this may mean that the treatment should remain in place longer, on average, for PPMS patients than for other MS patients. That would be good news for us.
But there remain so many questions to be answered about the relationship between CCSVI and MS, and about the effectiveness of the various treatment options. But some of us just don't have time to wait for the questions
to be answered before taking action. I respect those who wish to wait, and I respect those who have run out of wait, and have taken action.
What I don't respect are people (especially doctors) who don't seem to understand that some of us can't sit around for 5 to 10 years while they try to figure this all out. The risk of inaction for many of us is higher than the risk of action.
Good luck to you and your fiance.
Mitch