While we all have to deal with the many challenges that life throws at us, fate has decided to really challenge Shanna with Multiple Sclerosis. Shanna handles this challenge that has been strewn upon her with an amazing grace, spirit and zest for life that inspires every life that she touches. Shanna, by keeping a positive attitude, living an active life and staying healthy through exercise and diet, is winning the war against MS. However, the MS does win some battles as it saps her energy, limits her mobility and inhibits her motor skills.

The MS Clinic in Calgary is where Shanna has gone to date to receive medical treatment for her MS. Their treatment is to prescribe several medications, including Rebif. Rebif is one of the approved and tested drugs that has been shown to slow down the progression of MS and its symptoms. The Rebif drug is based on MS being an autoimmune disease caused by the body’s immune system attacking and destroying parts of the nervous system, effectively short circuiting communication between one’s brain and body leading to the physical symptoms of MS. The Rebif drug is injected into the body and its purpose is to regulate the immune system to prevent and control the autoimmune attacks that cause MS.

While we do know that the Rebif drug has not stopped or reversed Shanna’s MS symptoms, we can not know if she is better off for taking the drug because it is impossible to compare where she is now to where she would be without taking the drug. In our annual visits to the Calgary MS Clinic and in our visit a couple of years ago to the MS clinic at the Mayo Clinic in Arizona, we have been told repeatedly that while there is promising ongoing research, there are no other viable treatment options available today and no viable treatment options expected to be available in the short to intermediate future. Thus, the status quo is a wait and see proposition with the best hope being that the medications hold the symptoms at bay.

About a year ago, a story about Dr. Zamboni in Italy hit the airwaves stating that he had developed a new treatment for MS patients that appeared to significantly alleviate symptoms. In summary, Dr. Zamboni’s theory is that MS is caused by poor blood flow to the brain. This poor blood flow leads to deposits being left in the brain which cause the nervous system problems that create the physical MS symptoms. Dr. Zamboni’s theory is that MS symptoms can be alleviated by performing a basic angioplasty procedure on the veins in one’s neck and chest to improve the blood flow to the brain. The original story and video that aired on the CTV news program W5 can be found at the link below.

http://www.ctv.ca/CTVNews/WFive/20091120/MS_W5_091120/

Upon our initial viewing of this story, our reaction was one of amazement and optimism. The single most important item that struck Shanna in the W5 video is that the when the patients described their symptoms before the surgery, their descriptions exactly mirrored how Shanna feels. Only a MS patient who lives the disease can relate to how another MS patient feels. Thus, it is reasonable and logical to assume that she would receive the same benefits from the surgery that these patients testified to. Wow!!!! MS is not a mysterious autoimmune disease, it is a vascular condition. MS can be cured by a simple, proven medical procedure. If this is true, the MS medical communities and governments in North America will be all over this new theory and fast track it to MS patients.

However, the sceptic in me said that if something sounds too good to be true it probably is and prudence is warranted. Thus, Shanna and I decided to not to be emotional and not to do anything rash and wait for the Canadian MS experts to move things forward on our behalf before making a decision. With the massive, dramatic positive effect this surgery appeared to have on MS patients and no new treatments promising similar results in the pipeline, of course this new theory would be approached with an open mind and moved forward with some urgency.

One year later, here is what the MS community in Canada has done relating to the theory:

1. Nine of the provinces and the Federal government have no plans to devote any funds to performing clinical trials relating to this theory at this time.


2. The province of Saskatchewan is the only province doing clinical trials. It has put aside $5 million in funding and a process leading to clinical trials will begin in spring 2011. http://www.mschristian.org/msc/index.php/from-the-web/41-msrc-latest-ms-news/8426-saskatchewan-slates-5-million-for-ccsvi-trials


3. The MS Society of Canada, despite massive protests from their donors and benefactors, is not contemplating doing any trials at this time. The have set aside $1,000,000 so they can ‘hit the ground running when a therapeutic trial is warranted and approved’. http://www2.macleans.ca/2010/06/14/ms-society-of-canada-a-house-divided-ceo-says/ http://www2.macleans.ca/2010/09/16/ms-society-of-canada-earmarks-1-million-for-ccsvi-clinical-trials/.


4. In late August 2010, a group of MS experts held a meeting where they decided not to move forward with clinical testing of this theory. It should be noted that it was a closed door meeting and it has been reported that not one expert who was familiar with the new theory was present at the meeting. http://carolynbennett.liberal.ca/blog/cihr-announcement-on-ccsvi-and-ms/

So, one year later, the MS Society is ‘looking into’ studying this theory, 10 of the 11 governments in Canada are not contemplating clinical trials at all and the experts are not even open minded enough to listen before making a decision. One province will begin doing trials at some point in 2011. There are not even plans to test Canadian MS patients to see if the blood is flowing properly to their brain or not. Not quite the response that we were hoping for!!!

In my opinion, the vested powers that be regarding MS in Canada are taking a classic protect their turf, cover their butt, stonewall and delay approach to this new theory. Based on their actions and statements to date, it is my opinion that the Canadian MS community will not begin to seriously look at this theory as an MS treatment for at least 5 to 10 years, if ever.

Thus, Shanna and I have concluded that since time is the only non – renewable gift that we are given in life, we need to say @%# the Canadian governments and the MS bureaucrats as they are clearly not approaching the new theory with an open mind or any sense of urgency and determine on our own how we wish to proceed. Life is too short to wait a decade and put your fate in the hands of a bunch of vested interest, foot dragging, close minded, bureaucratic jackasses who make decisions behind closed doors and do not even allow the other side to show up and present their data. Sitting around and whining about how ‘the system’ is letting us down and waiting for the government and vested interests to take care of us is also not how we choose to live our lives. Our lives belong to us and we are in control our own destinies!!!

So once we determined that we were not going to receive any meaningful help on a timely basis from the Canadian MS community and governments, we investigated the following questions relating to the Zamboni procedure::

1. Does the procedure work?


2. When and where can we get the surgery done?


3. How much does it cost?


4. Is the procedure safe?

Below is the data that we gathered during our decision making process:

The data shows that 73% of the people who have had the procedure done have shown improvement. We are not the only ones frustrated with the foot dragging going on. Many Canadians, including several people in our extended network have gone out of the country to have the procedure done. The anecdotal evidence that we have gathered from these people is simply that they improve after receiving the treatment!! Also, their testimony speaks to Shanna as she relates to how they felt before the surgery. Based on that data, what is there to lose if the procedure is safe and affordable?

Our research showed that people are getting the surgery done in Mexico, Poland, India, Italy, US and Germany. Doing the surgery in a second world country would entail too much risk in many areas (licensing, credentials, regulations, insurance, legal system) in my opinion and is simply out of the question. Since the surgery is not going to be available under any circumstances in Canada for many years, our criteria made the US and Western Europe the two viable options to consider. Putting up with the draining travel to, language barriers in and culture differences present in Western Europe is well worth it if a fun, exciting tourist experience filled with sightseeing, food and beverage is the reward; putting up with the stresses and costs of overseas travel plus the stresses of a medical procedure is really far from ideal.

During our research fate intervened!! While visiting Shanna’s parents in Norquay, SK this August I met friends of Shanna’s parents while parking in their driveway and checking my email by poaching their Wi-Fi signal!! I met them when they pulled up behind me and politely asked me to move so they could get into their garage!?!? The couple, of which the husband has MS, passed on information to me about a clinic in Phoenix, Arizona that was performing the Zamboni procedure. (Thank you so much Dianne and Jay!!! The information that you passed onto us has been invaluable!!) A quick visit to the Lifeguard Clinic’s website (link below) indicated that the costs are relatively reasonable, the hospital is 20 minutes from our residence in Goodyear, AZ and the doctors are extremely experienced and they obviously operate under stringent US licensing, insurance and legal requirements.

http://lifeguardclinic.com/VIPProgramforMSPatients.htm

The simple fact that the doctors in this clinic, with literally decades of heart and vascular surgery experience, would perform this procedure in the US under its stringent regulations, insurance requirements and the ‘sue happy’ American court system hanging over their heads alleviated our safety concerns. These doctors are clearly experts in the field of this type of surgery and have determined that the benefits of the procedure outweigh the risks.

Not to harp on the same point, but experts such as the doctors at this clinic, are who the Canadian MS people need to be interacting with and inviting to their meetings when discussing the safety and effectiveness of the Zamboni procedure. Shutting out experts with heart and vascular surgery experience from the decision making process, in my eyes, massively reduces the credibility of the decisions that have been made to date in Canada.

A phone call in early September to the clinic led to some basic new patient paperwork. The paperwork was then submitted along with a list of already scheduled dates when we were going to be ‘wintering’ in our Goodyear residence. We were then quickly and efficiently booked for testing on Monday November 1 and the Zamboni procedure on November 2 if the test results warrant it.

Wow, extremely experienced doctors performing the procedure, a reasonable price, the hospital 20 minutes from our residence, no culture or travel issues, being in our own residence before and after the tests and procedure, being able to arrive a few days early and stay a few days after the surgery; all of our concerns were alleviated and it was full speed ahead.

So here we are less than a week before the procedure. My current mindset is one of cautious optimism and pensive worry. My Shanna is going under the knife!! All surgery has risk!! What if it doesn’t work? What if it does work? How are our lives going to change? If it doesn’t work, how will that affect Shanna’s psyche? Only time will provide answers to those uncertainties.

One thing is a certainty though. Shanna and I are both truly and deeply blessed with amazing family and friends who love and support us. We can not thank you enough for your thoughts and prayers at this time.

Feel free to forward this onto anyone who may be interested in Shanna’s adventure and how it turns out.

I will keep you updated with future communications detailing the testing, the procedure, the overall clinic experience and the results.

Thanks and God Bless,

Ken and Shanna Engler