May 27, 2010
**** *rant Street
Dear Mr. Kevin Falcon;
I am writing you this letter after watching a tape of the discussion between you and Mr. Adrian Dix this afternoon about CCSVI. I am compelled to do this for many reasons, one of which is due to my intention to proceed and go out of country for the Liberation treatment but only because it is not looking hopeful that it is going to be made available to me or my friends here in Canada in any sort of a timely manner. I am also compelled to write you based upon your own personal story with your father, because I have a comparable story of my own and my fear is that you are comparing apples with oranges in this particular situation. My hope is that by the end of this correspondence you will see and understand the very ENORMOUS differences between what our fathers have been through and what I am requesting to have done medically here at home.
My Dad has very advanced Parkinson’s disease. He was diagnosed very early in life at the age of 53, today happens to be his 71 birthday and I’m not sure that there are going to be many more. Our family, much like yours, chose to go forward and pursue the experimental brain surgery knowing fully what all of the risks associated were. We hoped for the best and came out with the worst; my father suffered a brain bleed on the table during the attempt to thread the second wire into the right portion of the brain. My father was returned to us severely altered, with little to no functioning left of his brain to do any sort of executive reasoning. It has been a challenge EVERYDAY for my family, one that I’m sure you can relate to from your shared experience. I have often played with the question of “what if” in my father’s case. What if we hadn’t moved forward with the experimental procedure? What if it had all gone right? However no amount of “what ifs” are going to change the outcome for my father, nor my family. We live with the reminder of science going wrong and our expectations being too high every day.
Fast forward to my own health issues and challenges and I hope you begin to see the differences between the two fruit that you are trying to compare as being the same. I myself Mr. Falcon was diagnosed with MS shortly before my 21 birthday, I am now 33 years old. I have changed careers to re-establish myself and make room for my progression three times. I have tried most of the disease modifying drugs available on the market and have been asked to seriously consider the benefits of chemo therapy and most recently Tysibri because the other injections do not seem to be doing their job. As angry and frustrated as I get with the system I have quietly accepted wait times up to 11 months for an MRI. I have paid extra, again quietly going along with the system, when I am asked to take drivers medicals that do not reflect any of the MS symptoms known to mankind. Finally I wait to see my neurologist for up to three months because of the high volume of demand even when I’m in the middle of a life altering attack; I quietly take my place in line. The thing is sir, most respectively, I am tired of being quiet and suffering because the system is too taxed to address my needs this time.
Dr. Zamboni made a very significant discovery that he presented to the world in 2009. He discovered a vascular issue that has been acknowledged and accepted by many medical bodies world wide as being valid and true that we are all short handedly referring to as CCSVI. This condition has been found to have a higher concentration in the MS demographic; this is true in the research done thus far. However what I want you to consider sir is that no one has made the argument that we are the SOLE group affected by this “plumbing” issue, we have just been the focus up to this point. My request going forward is that you try to remove the MS from the equation when rationalizing through this very thick medical forest.
I might have a confirmed, documented, scientifically verifiable vascular issue. I say “might” because despite my best efforts and established symptoms I cannot receive testing to confirm or deny its existence in my body here in British Columbia at the moment, let alone Canada. I was number 17,643 on the waiting list for the diagnosing trial going on at UBC after they chose their 100 participants for the yet to commence trial. I registered the day after the W5 story broke. I’m taking steps based on a lot of research to head out of country for diagnosis and treatment should I have this vascular congenital abnormality; I don’t think I have been left with any other choice. If I do have this condition it means that my brain has been absorbing toxic levels of iron and my heart has been denied normal levels of oxygen since the day I was born. I am not a doctor but I can only imagine what another 7 to 10 years will do to the overall health of my body.
Homeostasis is a term I learned in grade 7 biology and it has been playing in my mind over and over again as this “fight” has been continuing on. Angioplasties are not new science Mr. Falcon. They have been performed thousands of times today alone. They are very low in risk and they are not new in any way, shape or form. I was informed through my research recently that when the first angioplasties were presented at the American Heart Association’s annual meeting just over 30 years ago, that the doctor was given a standing ovation and the procedure became commonly available as soon as everyone could learn the procedure with NO CLINICAL trials. The science is that medically and ethically sound. It makes sense in order to maintain the homeostasis of one’s vascular system. Nothing else works without that, but it is not brain surgery sir.
You see I do not know if CCSVI is connected to my MS. I know I have a higher chance of having CCSVI because I have MS that has been statistically established through the trials that have been performed already. I hope and I encourage trials and research to continue to find out why more MS’ers seem to have CCSVI than other groups, but I just cannot justify standing around and waiting in the meantime.
I hope you understand that I would not put my family through the threat of any substantial, undue risks or hardships because of what we have all experienced with my Dad. And to be quite honest with you Mr. Falcon, I do not think that I am half as brave as my father in that regard anyway. Perhaps we will someday establish that this vascular issue is the genetic link between both my Dad’s disease and mine and although I have watched my Dad progress to the point of knowing it’s too late for him, I’m not about to quietly sit back and let that become my fate.
I wish all the best to you and your growing family Mr. Falcon. I hope that you have had to endure all that you have to in regards to family health issues. Please wish me luck and HELP my family along with mine.