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Saturday, January 8, 2011 3:00 AM | Andrew Durso Volg link

I'll be honest - I was reluctant to post this one o0n the CCSVI Locator site, worried that it may be misconstrued as me knocking CCSVI. As I clarify in the post; I've seen the miraculous outcomes that some pwMS experienced. I am sad to say that it was not the case for me, and that I'm left with a plethora of questions going forward. Read, weigh in, but know that I firmly believe that there is something behind Dr. Zamboni's theory. Somewhere...



And 2011 quietly came to be as I studied my last MRI from Oct-2008 in one window while trying to establish precisely where my motor cortex is (if you’ve ever had an MRI done, you understand that it’s simply ‘slices’ of whatever part of your body is being scanned–in a typical MRI for MS patients, they ‘image’ your brain, cervical spine, and possibly portions of your spinal cord), while in another window, I’m trying to teach myself what the heck it is that I’m looking at. All this because I want to know. I must know; so rarely will a medical professional be completely candid with you as a patient, and understandably so. Somewhere in the ‘do no harm’ part of the Hippocratic Oath that these women and men have taken, doctors, neurologists, radiologists, whatever specialist it is that you’re seeing for whichever of the multitude of maladies that may be aligning to affect your ‘everyday’ wants to avoid eliminating hope; hope of a life free of medication. Hope for a life free of degradation. Hope for a life free of the kind of ‘wonderful’ that we, the sick, are living as we descend further to infirmity. Hope…


But all I want is balls-out-honesty. The only doctor that has ever even come close, oddly enough, was Dr. Freedman, who, when looking at the very same aforementioned MRI, intimated that walking may be a thing of the past for me. For all the bad press he’s been getting from we pwMS, repeatedly asking for his resignation, citing ‘conflicting interests’ between he and the drug companies that bankroll his research, may, in the end, turn into a ‘we-shot-ourselves-in-the-foot’ situation. The man is a brilliant Neurologist who has helped many people and whose aim, regardless of where the funding came from, was to help as many as humanly possible. Somewhere in the craze that came with CCSVI, brought to light in a reprehensively irresponsible manner by thw CP/AP, releasing poorly controlled clinical trial data before the proper research channels had been gone through, setting off a spark of an idea that we needed to mobilize and force a paradigm shift in how MS is looked at and treated, and by which specialists under which disciplines are to be considered the ‘go-to’ people–a radical change in the ‘status-quo’–but one that, to me, seems premature.


Having said that, let there be no confusion — I am still a proponent of venosplasty as a potential treatment for MS. I myself have undergone procedure. In my case, there were no miracles. I was not jumping up out of my wheelchair and walking — not the next week, not the next month. But there is something there, something that science, in time through proper study, will prove that Dr. Zamboni’s theories are correct. During my two-week trip to Costa Rica, where I had the procedure done, I did see some pretty remarkable improvements from some of the patients that were down there. I can’t explain it; I’m no doctor, I’m no neurologist, and no radiologist, I’m nothing that ends in ‘ist’. What I am is some events in ‘ent’ — a patient. Patient whose options were running thin. So after a string of fundraisers, an outpouring of support from a multitude of different people, whom I will never be able to thank appropriately, I sought this treatment, going in with no expectations, and lots of HOPE.


And the work has only just begun. I’m in the middle of assembling the videos of the physical therapy I was undergoing while down there, and I’m currently seeking a physical therapist that will mirror those exercises with me. At the same time, I’ve been doing a lot of research on modifying my diet to better ‘fuel-my-tank’. I have people helping me with this, but I think it may turn into the most difficult part of my recovery; access to the kinds of food that are most beneficial to me is spotty at best. But I will prevail. I know I will.


The question that plagues me, however, is how, how on earth can the neurological deficits that have been brought on by this evil disease be repaired? Is the answer in neuroplasticity? Can my brain rewire itself to use portions that are undamaged to do the things I used to?


I don’t know. I don’t have fancy title, I have no group of letters at the end of my name, hell, I’ve got a high school education (I guess you could say some University — at the moment I’m rocking a 4.0 GPA as I’ve only taken one class, MDCM 200 – Media and Society in Canada – and did exceptionally well, if I do say so myself…).


But hope… it’s one thing I have in droves. Because even when it feels lost, someone’s there, friend, family, or even a stranger, to remind me of its importance.


Here’s hoping…


-A.D.