Saturday, July 17, 2010

CCSVI Vacation Packages

July 17 2010

I appreciate the recent changes in some of the Face Book groups for CCSVI. Their administrators no longer allow advertising for "Liberation Procedure Vacation Packages". More and more private practice clinics are providing the testing and angioplasty. Unfortunately because of scrutiny and patient overloads, they can't announce their services openly. I would be wary of those who do.

I had my procedure done on June 3rd in the United States. I am not a woman of means or noteworthy. Yet there was no need to fly to India, or Poland. In fact I will return in August for a follow up visit. In addition, I will have the azygous vein checked also to determine if there are any blockages there. My intolerance to heat has not seen improvement and I have spinal lesions. These post treatment issues are beginning to arise as more people are treated. We had no instructional materials because they have yet  to  be been written. That would seem to give credibility to the neurologists and others trying to dissuade us from our journey to liberation. Surely I would be unable to plan a trip to an exotic location for follow up care. Given the funds, I would prefer the French Caribbean or Tahiti, but they aren't providing the service there either!

Until we are given credibility in the media and by the medical community at large, most of us will continue to progress with this disease and suffer unwarranted disability. This is more than sad, it is unconscionable. I know that my quick improvement is not what everyone can expect. One of the PPMS patients treated by my team did not have anything but minimal improvement for six months. Since then he has nearly matched the place I am in now. Patience is not one of my virtues,especially concerning the need to keep doctors names and locations private. Some of the history we are making is not particularly helpful in the here and now. Those who are moving forward will make it possible for so many more. Then there are the others who will be last in line and some will be too disabled to regain as much as they could have were it not for the uninitiated who are adamant on halting the procedure altogether. The light is beginning to dawn, however.

As disappointed as I am in the Multiple Sclerosis Societies, doctors and clinics preying on those excited by this history making procedure, disgust me. There are more than a few of them. I truly hope that everyone is careful and takes into consideration the opinions of those who have been successfully treated. We are in the infancy of this movement. More is being learned and revealed each day. It is literally that swift in coming. The intellectuals and greedy are not the movers and shakers we need. If we need to learn how to raise funds quickly for a useless, toxic drug, they would be the top in their field for a leg up.

There is insufficient supply for the demand as it stands now. Advertising would be superfluous and highly suspicious at this point. Those who can, do. Those who cannot, scam and advertise. This is certainly not the issue to paste the "you get what you pay for" label on.

There is ample evidence that we are beginning to see the writing on the wall for our detractors. They are surprised at our tenacity and taking an offensive posture toward the evidence displayed before the world. MS is not the only disease on the pharmaceutical field. They are in little danger of going into forfeit with their longstanding domination over every other disease or medical condition, yet. That would hold true for the skeptical neurologists of the world as well. Why such driven opposition? Are we really that formidable? Of course not! We are a compilation of fanatic, disabled and cognitively impaired individuals who have nothing in common but this degenerative, life sucking disease. We need to be constrained for our own good.  Maybe we just need a nice  vacation and get over this obsession we have with our miracle cure fantasies. Even on my favorite MS website the words ;cult, fanatics, and hysterical, and obsession have been used to describe those of us who have been sucked in to this 'cure' fantasy. It doesn't matter that they are the people using the term"cure" as a banner. None of us who have actually had the procedure have declared it as such.

Do your homework, make your decision and carry it through wisely.

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