Dear Santa,
As you know I have written you every year for about 38 years. This years Christmas wish list is a list of one thing.
Can you bring CCSVI called the "Liberation Procedure" to our Nation's Hospitals that is angioplasty that is being performed on people that do not have the label or tattoo of a disease called Multiple Sclerosis. It is a debilitating disease that is very progressive in nature with no cure or medication proven to help regain some lost abilities and different in each person. This disease takes away your mobility, your brain function skills, and purpose of leading an active and fulfilling life. It tears apart friends, families and relationships as is very hard on all to watch and witness someone in declining health in the prime of their lives.
This disease most often makes its onset usually in young people in the prime of their lives in or around the age of 20-40 years old. Until Nov 21, 2009 there was nothing available to ease the pain or repair damage which is brought on by MS. When that date happened Millions of people tuned into CTV's W5 and our world was rocked with a story of love from Italy. Dr. Paulo Zamboni had discovered Blood was backing up into the brain from veins on his patients including his wife. In 2006 he decided to try Angioplasty which is usually performed in arteries for Heart patients. His thought was to try this procedure on his wife and others who had MS, 65 to be exact.
Today in 2011 most are still doing well and living normal lives. One even stating "I have forgotten what it even felt like to have MS".
After watching this same newscast I was interested in finding out as much as I can and if this type of procedure was available for my MS diagnosed in 2008.
I immediately went to the information highway of the Internet and YouTube and Facebook sites. I found numerous groups and people who were interested in the same sharing of information and what it could lead to.
It brought me to numerous people like Irish Bear 76, Kezzcass, Ginger and Prissie 28 who shared the same vision of living a full filling and productive life while trying to live outside of a disease with a laugh or two along the way. In January 2010 I received a phone call. He said his name was Wayne and he really liked a post I had made on one of these sites. With the new friendships I had formed over Facebook it lead me to Dr. Sandy McDonald where I had a test done known as a Doppler Ultrasound, which showed I had reflux of blood into my brain. Can this be possible?
In February Dr. Zamboni was coming to Hamilton Ontario to attend a Medical conference and with the help of WaYnE and others pushing, I attended this conference with the chance of meeting a man and finding out more information. I did attend this conference as did my Neurologist after I had brought him information about this procedure. In a later appointment with this same Neurologist I asked him questions of the conference while providing him with information. He exclaimed "this is nothing more than Junk Science" and put my information in the garbage.
In finding a friend from Norway, I was researching to find out anything I could about my disease. I was so intrigued by this Country and its similarities to Canada, not only with a similar high rate of MS but a natural beauty that both countries share I decided to visit for 8 days as a 40th Birthday present to myself and a chance to meet a new friend that I share so much in common with and again find out as much as I could. It was an eye opener heading to a country that is the creator of the World's Nobel Peace Prize that Dr. Zamboni could be soon a winner in Medical Breakthroughs in the world of MS. While in Norway I watched the first Social Media version of an angioplasty of our friend Kerri in Australia. Prissie 28's own words "WoW" On my arrival back home, the Internet and Social Media storm was alive with the first Canadian to go public on her Liberation procedure, our friend Ginger.
I also attended a conference of Neurologists in Toronto in April 2010 that was hosting Dr. Zamboni and his theory and new discovery to again find out more information about my disease. To my dismay I was shocked to see this was nothing more than a conference or trade show for Pharmaceutical Companies and their products and tried to gain entry to access this information and was quickly escorted out of the building by security as a person with MS is not invited or welcomed but to watch from the outside. As we know this is a multi Billion Dollar Industry with thousands of employees, lobbyists, politicians, shareholders etc. that have a great influence on our society. As we know our Society is driven by $'s and $'s= Power. Power + $'s = a level of society touched by 1 % of the world's population. I am not part of this 1% and just want to live with the other 99% of this world and be happy.
May 2010 brought me to Vancouver B.C. in my search of confirming what my first test from Dr. Sandy McDonald told me in January. Within a couple of days even before I left B.C. I had a 2nd opinion of Dr. McDonald's original findings. this time a test called an MRV showed the reflux and twisted veins in my neck. My EBM or Evidence Based Medicine was complete and had all the answers I needed to know and be on a search to have this procedure performed. Time was growing short.
In October I visited my home Province and shared some incredible moments with people living their lives with what I had been labeled with. On the drive home I received a phone call advising me of other clinics in the USA opening up, you should check them out when you get home. The next day I was on the phone to Rhode Island Vascular Institute RIVI and booked my appointment a few days later. My waiting period was only going to be 4 weeks. Unlike the original Poland idea of a 2 year waiting list. Obviously I wasn't the only one that had the same thoughts.
In November 2010 I would have my procedure. Prior to my departure I had my Neuro examine me where he claimed me to be a 4 on his EDSS scale of disability
November 23, 2010 all my hard work and determination had come through, all my research and gathering of information had paid off. Upon my return to Canada on a drive of 11 hours I did all myself with only 2 stops for a washroom all felt normal and even have visions returning to a career I love, My GP was in amazement of the symptom relief I have been experiencing of Bladder Control, Balance and Mobility, Brain Fog gone, Fatigue gone and an increase of weight which I was losing at an alarming rate. For the first time in years I was able to walk the Shopping Mall for 3 hours while doing my Christmas Shopping for my friends and family, I even stayed well past midnight at my family's New Years Eve Party, something I hadn't been able to do in years.
In January I even saw my Neuro where he was amazed of his patient as he was not aware I had had this procedure performed. His basic Neuro tests showed me as a 1 on his EDSS scale. My Follow-up Ultrasound showed all is flowing "Normally” I was back to playing Hockey, a sport I had played since the age of 2. I was in amazement of what was happening to me. Could this be possible??? I attended a conference of CCSVI in Toronto with my friends Anna and Dawn and 200 other people with MS hosted by the Peter Munk Center and one of the guest speakers was Dr. Barry Rubin, a Doctor who is on the board of the CIHR (a board of Dr's that give information and approvals for what type of procedures and clinical research warrant funding from our Government) who claimed "No Canadian shall be refused aftercare in this country that has had the procedure". I made it through the 4 hour meeting without visiting a washroom once. Is this the "placebo" effect so many so called experts talk about that I am experiencing?
April 2011, something wasn't right.
My bladder and Bowel control was gone. Pains on my right side I have never experienced before started happening, my fatigue of daily 2 -3 hour naps had returned, my appetite and weight gain stopped and so on. May 2011 I had a vacation planned with the hopes of starting a new life with someone which ultimately failed in Niagara Falls On as I could not walk more than 100M without having to sit to rest and had to spend an entire day sleeping in the Hotel.
Something was definitely wrong. Where had I gone wrong??? A return trip was in order to have another Ultrasound. As expected my right Jugular Vein was showing signs of restenosis with reflux of blood backing up to my brain.
I returned to my Neuro for guidance to have an MRI performed he said "not necessary as MRI's are only used in diagnosis of MS not of evaluating worsening symptoms as would be a waste of Tax Dollars and MRI wait times"
I then went to my GP in June and requested an MRI to find out what is happening with my brain and right side numbness and his response to me was "you have to write a letter to the College Physicians of Ontario and find out why I can't order an MRI for your returning MS symptoms”. July I was able to be part Dr. Haacke's research study in Detroit MI of those having Liberation with returning symptoms.
Sept 2011 I attended the New Beginnings Expo in Victoria B.C. to find out what I could do of worsening and returning symptoms post procedure. Again I met numerous people who gave me guidance and information including a Dr. from California who is the only MD to view my procedure and give an opinion that he would have liked to see a larger size balloon used during my procedure. I got to take home with me the numerous smiles and new friendships that were made. I also attended a GP appointment where I showed my worsening arm stiffness and partial paralysis in my right leg and arm. I again asked for an MRI. This was denied.
November 2011 I attended the Global CCSVI Expo which was an Internet Web cast for 36 hours on the anniversary of the W5 episode. I managed to make it to 30 of the 36 hour event.
Again it was a wealth of information that I am so thankful for having participated. There were Dr's, Experts, and other patients sharing information and stories of their liberation procedure . To date the Neurologists still call this "anecdotal evidence". When does the word get dropped??? There are approx. 20,000 procedures performed to date around the world.
Dec 2011 has anything changed? Well Santa, not very much. The other day I was in an Emergency Room not able to move my right arm without having a severe pain shoot through to my neck and spine. The Emergency Room Dr. said "I will write out a prescription for your pain but there is nothing I can do for you, except suggest you need to make an appointment with your Neurologist and GP. Is this what Medicine and Dr's rely on in 2011, approved drugs for your pain relief? What happened to fixing the problem? Or investigating the problem, instead you get a prescription of an antidepressant to handle your depression. This is what I ended up getting from my Emergency Room Doctor this week, another depression prescription for my pain relief and sent on my way. Great aftercare!
Dr. Rubin you said "no Canadian would be denied!”. What happened to having an MRI, a Cat Scan, or a simple X-Ray to see what my lesions are doing to cause my pain? Is this what you came up with in light of the death and refusal of care case of Mahir Mostic in October 2010? Just another depression prescription???!!!
Sure some Politicians are working hard for us in Ottawa but will be years before this treatment becomes available as the Pharmaceutical Lobbyists and Medical world are against this procedure as the "old school form of medicine" has not moved to the 21st Century and is stuck in 1987 and all people living with MS are in a fight for a better life. We with MS sometimes have more knowledge of our disease than our so called Dr's or experts. Now when a prescription is filled my first action is to google this pill and its side effects. Our parents did not have this technology available to them, but we do.
As we see so much during the Holiday season, miracles can happen and I just want you to visit every person MS is affecting and try to grant them a peaceful and pain free Holiday Season.
Sincerely your friend,
Jamie
PS: Btw don't forget my Christmas Stocking, it will be under my tree and I have been a good boy this year just trying to live and lead a normal and productive life as best I can.
