We Cannot Go the Distance Alone!

Does anyone feel overwhelmed with the amount of information, fact and fiction that has been generated concerning MS and CCSVI? I talk to an eclectic group of people including people with and without MS or CCSVI, lay people and professionals. There are so many facets in relationship to our condition that confusion and even panic is common. I try to keep in mind that it isn't necessary for me to read every word and assertion on the subject. That has helped me to set priorities. There was a time that I spent eight to ten hours a day trying to answer questions and research information for individuals on almost a dozen different websites. I was exhausted, and my family wanted me to share some of my new energy with them. I am in the process of consolidating my information and perspective into just a few outlets. I have a website, but have never used it very often.

When I am asked for advice about procedure preparation, my first recommendation is to keep a personal journal. Make notes of telephone calls, correspondence, appointments etc. Keep a daily record of your health, medications,etc. This may sound simplistic, but a written record of your daily routine and interactions are legally admissible should the need arise. Keep mall emails sent by doctors, nurses,or any communication you think is noteworthy.
Some of you you may know that I have a lawsuit against me for posting a conversation I had with three neurologists a few months ago. Though I did not mention anyone by name, the process of elimination would make their identities easy to discover. After sweating it out for what seems like forever, the suit was dismissed. I wish it was because they knew they were in the wrong and had an attack of conscience. In truth, the judge threw it out because I had recorded the entire meeting. I also tried to make them aware of that but they weren't listening, obviously.
The reality of CCSVI and the venous connection to MS is no longer something that the Big three can treat lightly. The number of people treated is rising daily. Professionals in the medical field are presented with irrefutable evidence of the true nature of our conditions with almost daily updates.Their reactions are juvenile and destructive.Smoke and mirrors are only effective for the short term, not unlike the placebo effect.

Grass root efforts require diligence and the willingness to put the needs of all in line with what we need for ourselves. There is no person who has had the procedure who can claim they did it by their own effort alone. We are yoked together by a common cause. A team of oxen will walk in circles if unequally yoked. Some of us can't do everything, but all of us can do something. A kind word, or acknowledgement may be the only thing that some people can offer. That is as important as the efforts of the strongest and most knowledgeable of our entire community.
Though it may be an unpopular observation to disclose, evidence is indisputable that there have been other researchers and doctors who were making inroads to CCSVI for much longer than we have been led to believe. Dr. Zamboni's willingness to share his discoveries and research was a catalyst for the revolution of which we are all a part. We cannot reach into past history and recompense those who have suffered from CCSVI in the interim. Hindsight is always 20/20. What we can do is move forward as quickly as possible to make this treatment available, safe, and equitable for anyone who needs and desires it. Once we reach that end we can concentrate on recrimination for the many skeletons in the research and development closet.

Further delays from governments, MS support organizations and the entire field of neurology,and the main culprit, the pharmaceutical companies, cannot be tolerated any longer. After learning that two more of our number has passed away due to complications of MS, my willingness to allow time to heal all wounds is standing on shaky ground. My tolerance for people who have MS and are actively fighting against us has reached its expiration date. I do not know if the 62 year old Canadian woman was hoping to be treated or that she was even aware of CCSVI. The other person was in a similar circumstance as Barb Ferrell some time ago. His family fought silently to raise the money needed to travel to another country for his procedure. His struggle is over and his wife and children are left to mourn and shake their heads in disbelief.
The $10,000 to $25,000 price tag for this procedure is obscene and in no way aligns with similar treatments not associated with Multiple Sclerosis. That is food for another blog.
We need to keep in mind that we have a common purpose and act accordingly.

Anyone who needs to add some important information to their CCSVI folder, might consider these two links:
http://www.fondazionehilarescere.org/pdf/03-2518-ANGY.pdf
This has information about the congenital link to CCSVI.

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.impact-ltd.ca%2FDr...
Statement of Dr. Sandy McDonald, before the subcommittee on nuerological disease of the Standing Committee on Health ::May 11, 2010

When Will CCSVI Stop Being Treated Like a Bastard at the Family Reunion?

Try as we might, we can't control everything. We have supported and helped each other well over the past year in regard to MS and CCSVI. I understand as well as anyone how important it is to me and all of us that we have good follow up care. There are a great many people who have spent almost all their time and energy to spread the word and contribute where they can. Some have more than others to give; time, money, emotional support, research results, etc. We need to keep in mind that we are responsible for our own health care, which includes securing a doctor to perform our angioplasty procedure. Keep in mind that while our choices were almost nil 10 months ago, our options are still very limited. It is not in our best interest to go outside our local area. We all understand this, yet I would be lying if I said that I would rather convince a local doctor to learn the procedure and volunteer to let him practice on me. That is exactly what many of us did out of necessity. If I had the option of the latter, or traveling to a doctor who has a lot of experience in this arena, I wouldn't hesitate to travel. We have to be realistic. Who among us wants to fork over $10,000 to have a procedure which their doctor has had little experience? On the other hand, if we don't garner doctors in our own area, there will never be enough providers to make this globally available. It is a conundrum few of us are comfortable with, yet we have to address it sooner or later.
Unfortunately not everyone has the where with all to bring treatment to their respective cities. Even where this has happened, not all doctors agree on the same technique or protocols, as it were. I for one am grateful to anyone who has helped in the smallest way to forge ahead to insure treatment for everyone. It was nothing short of torture for me to find my own doctor. I was lucky to find my eye glasses. I took hours to type what once could be accomplished during TV commercials. Many PwMS have cognitive problems as well as physical limitations that make the simplest of tasks difficult. I was very lucky, period. I did quite admirably for myself, but not without the aid of others. I also cannot look someone in the face and tell them to go hunt up a doctor. I also can't provide one for everybody. That is an impossible task for anyone. Those who had treatment early on were aptly tagged as guinea pigs. I became very angry with people who wanted access to the procedure as long as they didn't get their nails dirty. Where and whenever we can ease the burden, we should.I surely can't force any doctor to hire a PR agent to advertise what is clearly not yet an accepted procedure. No person should be forced to lie to insurance companies to get approval either, but it is what it is. That so much has been accomplished in this short span of time is medically speaking, amazing. People who think that PwMS have it made in America are sadly mistaken. There is considerable pressure to modify progress as much as possible. In addition to finding doctors and fundraising, we need public opinion and political support. Mainstream media has not been our greatest ally. Some are doing a great job, most are having a good laugh at our expense. We do make an amusing pastime. A few well known people have come to our aid, too few. JK Rowling, Annette Funicello and others have been quite generous. The people who have sworn us their allegiance, for example our neurologists, MS societies, governments and other MS "support" groups are not a part of our fan club. There is not enough profit in it for those. I intentionally didn't list the drug companies because they have never pledged anything to us other than their advertising schtick. The sad truth is that the support of highly visible and influential people come from either the ones who have MS themselves, a loved one with MS or someone who stands to benefit financially from advocating the procedure or have some other vested interest or personal agenda. If there are any outside of that criteria, I am woefully ignorant of their identities. Celebrities who have aligned themselves with other treatments and therapies aren't willing to give up the gravy train mid-stream for the likes of real people with CCSVI. Some employees of the above mentioned groups broke ranks to have the procedure for either themselves or a family member. They did not do so publicly either, but rather added to the entire secretive, carnival like atmosphere that we have unwillingly become a part of and witness to.
As much progress as has been made, the disparity in the supply and demand will continue to grow as more people with Multiple Sclerosis are made aware of this treatment option. I estimate that only a third of the MS community knows anything about CCSVI or are woefully misinformed. You can test my postulation by signing into the NMSS website or any of the for profit research support sites and share your own CCSVI story. The response will positively tickle you unless you wear your heart on your sleeve. Those who stand to lose status, reputation and an obscene amount of money will continue to work diligently to ascertain that CCSVI remains a controversial,divisive issue in 2011. They have had years of success so far. Dr. Zamboni, the World Wide Web and technological progress in medical imaging have been the most substantive flies in their ointment so far. Until now all research, and studies have remained in locked file cabinets and external hard drives.
We are becoming a force to be reckoned with, but not without further sacrifice and diligence. We still must make every effort to find and convince interventional radiologists, vascular surgeons, neurosurgeons and our general practitioners the efficacy and benefits of angioplasty for CCSVI. The brave among us may want to share the information with their neurologists, but expect fireworks. Most of them are a bit touchy about being told they have been treating the wrong disease. Here's to a better year in 2011