Posted: Mon Jan 11, 2010 3:51 pm
I think we should take up a collection and buy some happy pills for Dr. Marrie, not that she can't afford them. My goodness, she seems very unhappy in these videos.
Several points.
1. I tend to agree with MechanicallyInclined about this mainly being about caution -- it's hard to be patient but there is so much more to learn. I was a lot like Dr. Cossoy when I first saw the W5 piece a few weeks ago -- I wanted to rush off to Italy, too, but mostly so I could hug Dr. Zamboni and thank him from the bottom of my heart. Over the past few days my enthusiasm has been tempered somewhat when I realize potential risks and the many unknowns. I would love to have an outcome like Magoo (Rhonda), she is my inspiration, I've all but put a picture of her on my refrigerator, and there are others also like Rose and her amazing victories... but then there are patients like Radeck and those for whom the procedure brought pain with disappointing results considering the financial, physical and emotional costs. These folks bring me back down to earth and remind me to think this through and consider more carefully the potential consequences, both positive and negative.
2. I actually thought the videos helped bring some balance. For one thing I felt that Cossoy at least tried to strike a friendly, if somewhat wary, tone. He admitted to being biased towards an immune system MS cause. He apologized for seeming "dismissive" in their voicemail message about not recommending testing outside of research studies, and he actually sounded sincere. He also admitted that relapses in the study occurred after restenosis, but that point was easily missed so bears repeating here.
However, some of the points made really irritated me. Such as:
- Part 4, Cossoy: "There was no mention of how (the MFSC) tests were administered" -- I do not believe this to be true. The study has in its appendix a thorough description of the testing protocol (i.e. timed walk, 9-hole peg test, etc.). If they had varied from this I'm sure they would have been required to mention it.
- Part 5, Cossoy made statements about RRMS vs. SPMS using stats from the first study. According to him, 83% RRMS had azygos and 1 or both IJV involvement vs. 56% SPMS with bi-jugular and no azygos involvement. He questioned what happened to the azygos involvement after patients became SPMS. But isn't it possible that all 56% of SPMS patients had bi-jugular stenoses prior to becoming SPMS? We simply don't know. Neither study disproves this possibility. How can he make such a broad assumption when he himself admits that it was a small pilot study? I'm no statistician so maybe someone smarter than me can help me out.
Bottom line, in part 6 Cossoy said that even if this procedure could arrest or slow progression, that would be considered a "great outcome." Well... that's really saying something so let's hope for at LEAST this great outcome for all of us.
Pam-Joy
Several points.
1. I tend to agree with MechanicallyInclined about this mainly being about caution -- it's hard to be patient but there is so much more to learn. I was a lot like Dr. Cossoy when I first saw the W5 piece a few weeks ago -- I wanted to rush off to Italy, too, but mostly so I could hug Dr. Zamboni and thank him from the bottom of my heart. Over the past few days my enthusiasm has been tempered somewhat when I realize potential risks and the many unknowns. I would love to have an outcome like Magoo (Rhonda), she is my inspiration, I've all but put a picture of her on my refrigerator, and there are others also like Rose and her amazing victories... but then there are patients like Radeck and those for whom the procedure brought pain with disappointing results considering the financial, physical and emotional costs. These folks bring me back down to earth and remind me to think this through and consider more carefully the potential consequences, both positive and negative.
2. I actually thought the videos helped bring some balance. For one thing I felt that Cossoy at least tried to strike a friendly, if somewhat wary, tone. He admitted to being biased towards an immune system MS cause. He apologized for seeming "dismissive" in their voicemail message about not recommending testing outside of research studies, and he actually sounded sincere. He also admitted that relapses in the study occurred after restenosis, but that point was easily missed so bears repeating here.
However, some of the points made really irritated me. Such as:
- Part 4, Cossoy: "There was no mention of how (the MFSC) tests were administered" -- I do not believe this to be true. The study has in its appendix a thorough description of the testing protocol (i.e. timed walk, 9-hole peg test, etc.). If they had varied from this I'm sure they would have been required to mention it.
- Part 5, Cossoy made statements about RRMS vs. SPMS using stats from the first study. According to him, 83% RRMS had azygos and 1 or both IJV involvement vs. 56% SPMS with bi-jugular and no azygos involvement. He questioned what happened to the azygos involvement after patients became SPMS. But isn't it possible that all 56% of SPMS patients had bi-jugular stenoses prior to becoming SPMS? We simply don't know. Neither study disproves this possibility. How can he make such a broad assumption when he himself admits that it was a small pilot study? I'm no statistician so maybe someone smarter than me can help me out.
Bottom line, in part 6 Cossoy said that even if this procedure could arrest or slow progression, that would be considered a "great outcome." Well... that's really saying something so let's hope for at LEAST this great outcome for all of us.
Pam-Joy