Last night was the annual meeting of the regional MS Society for the greater Delaware Valley. When I received notification of the meeting last month, and saw what the topics of conversation were going to be and who the panel of experts were, it was a no brainer. I had to go and see what they would say and if need be, put in my 2cents worth. The topics were: New oral drugs and the unknown side affects, Tysabri, on the market, off the market and now back on the market, (yah, there are side affects and there is that pesky virus PML, but lets not get into that too much).
Oh yes and then they just touched on the subject of CCSVI. There was a very short explanation of Dr. Zamboni's discovery and researched. Then, only the negatives..... Why would you want a wire inserted in the groin and fed up through the body to the neck, with all the dangers that could occur. People have died and stents migrate. They had to crack open a woman's chest. That doctors were going behind the backs of their hospitals and against the rules. These were their words....
During the question and answer session of the evening, most of the questions were about drugs and the answers were vague as far as what the side affect would be if you changed therapies.
I had the opportunity to ask the last question. Since one of the doctors on the panel, was also one of my neurologists, he asked, how are you? I replied to him "Fabulous". I asked if with the considerable number of studies that are underway around the country, would the neurological community be willing to advise their patients to be tested for CCSVI. Once again the responce was vague, and that there was not enough data from the studies to encourage such an action.
Before I yeilded the microphone, I asked if they would at least stand corrected and acknowledge that there have not been multiple deaths only the one that was not related to the procedure and that there is only one reported occurance of stent migration.
I will continue to fight the good fight and spead the word about CCSVI to anyone that will listen and wants the information.
There were a few people that came up to me as they were leaving to ask for more information and to thank me for bringing up the topic.
Next week will be the one year mark since the W5 report. I think it should be a National Holiday. Well, it will be Thanksgiving down here so we can all be thankful for Dr. Zamboni......