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Note from Dr. Sandy McDonald:

Sunday September 11 2011

The study I will be doing is not in conjunction with anyone else.

The protocol title is as follows

“An observational study using doppler duplex ultrasound quantifying the occurrence of jugular vein re-stenosis and complications following angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI)“

This study has IRB approval but does not allow me to do angioplasty--

This study allows me to do follow-up duplex ultrasound on pts pre and post treatment done elsewhere. This study does not endorse any specific treating facility.

I hope to get the study underway this fall

I hope this clarifies any misconception.

Thanks for your help. S

Some mixed feelings here -- congrats to Dr. MacDonald on achieving IRB approval for a study that is useful and needed; but dismay that he is not allowed to do angioplasty itself; and some frustration at the slow pace of research and politics. In the US, for me at least, insurance paid for my two procedures. In Canada, people are spending large amounts of money for this, often more than once. I feel both lucky for myself and terribly sad that this is still the way it is. The story broke in 2009, Dr. MacDonald treated his five patients in 2010 then was shut down, now 2011 is falling away from us, and will 2012 bring us any closer? Momentum, traction, in search of a couple positive treatment studies instead of the equivocal imaging studies....