FYI - Buffalo ccsvi study
Posted: Mon Nov 16, 2009 1:25 pm
Hi All:
I just got into the Buffalo Study, Dr Weinstock Guttman is my neuro. I have already received the doppler test and I'm scheduled for the MRI Dec 5th. I just discovered that their not doing the MRV as part of the study anymore. They only planned to do an MRV on the first 250. So, I missed out. Also, they only do an MRI on the brain but my lesion is in my spine?
odd. I guess they're looking for iron- maybe it doesn't show up in the spine.
My next big hurtle will be getting info about my blood flow and whether a stent is justified. I don't know if I can get the doppler results when the study is unblinded (soon) or not? Then, can I convince the ins. company to accept it?
I'm hoping there will be another "intervention" study but I haven't heard anything yet -
How do most people get the MRV and then approval for surgery?
They really didn't want to talk about how / when to take the next steps.
I am convinced this has to be pursued "vigorously". Maybe I can make some better progress at my next appt on Dec 8th.
Any experiences on the "HOW TO PROCEED" deliema would be most appreciated. Just for the record I'm not on any treatment except diet, and was dx'd ppms in 2001
BTW It really bugs me that Jacobs is funding this study themselves
Mick
I just got into the Buffalo Study, Dr Weinstock Guttman is my neuro. I have already received the doppler test and I'm scheduled for the MRI Dec 5th. I just discovered that their not doing the MRV as part of the study anymore. They only planned to do an MRV on the first 250. So, I missed out. Also, they only do an MRI on the brain but my lesion is in my spine?
odd. I guess they're looking for iron- maybe it doesn't show up in the spine.
My next big hurtle will be getting info about my blood flow and whether a stent is justified. I don't know if I can get the doppler results when the study is unblinded (soon) or not? Then, can I convince the ins. company to accept it?
I'm hoping there will be another "intervention" study but I haven't heard anything yet -
How do most people get the MRV and then approval for surgery?
They really didn't want to talk about how / when to take the next steps.
I am convinced this has to be pursued "vigorously". Maybe I can make some better progress at my next appt on Dec 8th.
Any experiences on the "HOW TO PROCEED" deliema would be most appreciated. Just for the record I'm not on any treatment except diet, and was dx'd ppms in 2001
BTW It really bugs me that Jacobs is funding this study themselves
Mick