Over the past couple of months, a number of patients have sent me CDs containing MRvenograms, ultrasounds and venograms, along with interpretations.
I have viewed many with dismay
I would say in general that the majority of the tests have been poor, inaccurate, inaccurately reported, and displayed in a substandard or incorrect way.
For example, ultrasounds that do not confrom to the ferrara recommendations and protocols.
for example a venogram of a normal left vertebral vein was reported as thrombosis of the jugular vein
So i had an idea to do a study of the state of the imaging now.
i would define with paolo, an acceptable image set for each test.
then review studies that are volunteered by patients to see what the standard are
would people be willing to participate in this trial.
I have CDs of head, neck and chest MRVs and Doppler ultrasound, along with reports that state I do not have CCSVI, from a local imaging facility. More than likely this is a false negative because, by comparison, I also participated in the Buffalo study and the Doppler study done there by a Zamboni trained technician was vastly
different than the one I received at the commercial facility. During that test, the sonographer was training other doctors and seemingly guarded answers given to questions led me to believe I do indeed have a problem. No results were given to me however, as it's a blind study. I did write the commercial imaging facility a letter (after several unanswered phone messages) to express my concerns about the quality of testing I'd received and they finally responded to state they're standing pat over their procedures and the results. My quest for good imaging continues.
Please let me know where to send the copies, I will put them in the mail immediately.
P.S. I have been lurking and trying to follow this very long thread for some time now and have learned so much from you and all the participants. My thanks to you, Dr. Sclafani, for being an open-minded champion who truly cares about doing the right thing and knowing that learning never ends. We're so very lucky to have you on our side!