This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
Saturday, June 2, 2012
I wrote this is answer to a question in one of the groups I belong to on Facebook. I thought it was worth repeating:
Yesterday I wrote something about fear, probably in this group. I think all of you have touched on valid points about our dilemma. There is fear of the unknown, worry over whether or not you will be one who realizes symptom improvements, the cost, a competent provider, the list is long. What I have observed over the past couple of years is a natural ebb and flow in interest levels. We don't know enough about the details of our condition, neither do the doctors.
We are portrayed for the most part as chronically ill desperate people with questionable mental faculties. We will grasp at any straw to prevent further disease progression and loss of quality in our lives. Some of blame is squarely on our shoulders as we grope around in the dark looking for answers. The media and the rest of the dirty dozen have done an effective job of cementing that illusion in the minds of the general public.
Many of us have stepped up to the plate and have accomplished what I consider to be a miraculous service that benefits us all. I applaud the ones who are willing to talk about their results good and bad. It is or should be easier for people who have had better than average results to make a video or blog about their experiences and answer questions for those struggling to digest all of the information they are bombarded with daily. It takes determination and courage to open one’s self to scrutiny from people on both sides of the issue.
There is a skewed perception overall about the effectiveness of the angioplasty procedure. Some of the confusion is due to lack of disclosure from many who have had better than average results. I have spoken about this with many people online and in live meetings. Some doctors put their names and clinics out for all to see, it was generally accepted that all of the doctors, clinics and studies were a matter of public record. This is a misconception. Several doctors have told me that if they were involved with treating CCSVI, they would not want to open themselves to scrutiny from their peers as well as the MS Societies, government agencies and sensationalists. Time has validated their concerns. There was a time I didn’t agree with them. That ship has sailed.
My biggest concern has been comprehensive care. I have pushed this issue for over two years. The response has been all over the charts, from no interest to open hostility. I always liken it to cancer treatment centers. They treat all aspects of their patients’ illness including nutrition, the latest scientific breakthroughs and alternative medicine to emotional and quality of life issues. Specialties are a needed reality. The price we pay is a single focus on a multifaceted disease. A GP is necessary to monitor what everyone else is doing. Most of us don’t have that when we step outside the medical community’s tiny little box or envelope of comfort. CCSVI falls into that category. I have listed many times the doctors and other professionals I feel are needed in order for us to receive optimal care.
The last focus is the procedure itself. There are doctors who openly share their expertise and experiences and there are others who are ambivalent to openly hostile to peer review. This is not unusual. All pediatricians are not universally talented or provide superb care. The same is true of any medical specialty. They each have their own gifts and talents. I am very relieved to see the end of the “shop a doc” mentality. Even equipment use varies greatly; stents, balloons, pressure, procedure approach, etc. One size does not fit all. Never was anything more true than in the case of PwMS/CCSVI.
Lastly there is always the issue of personalities. There are narcissistic self-promoting individuals, (medical professionals and lay persons), teachable inquiring people and everything in between. Most of us lie somewhere in the middle. There would be a definitive change in perception of MS & CCSVI if the ones with all the power, money and personal agenda were not so vehemently against us.