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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.
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.