Posted by Bob on September 10, 2003, at 13:03:27
In reply to Re: Another VNS study participant » LifeTime, posted by Ponder on September 10, 2003, at 11:52:31
> LifeTime,
> Thank you for listing your wife's VNS settings. I tend to be very aware of my treatments with respect to pharmaceuticals, but had the impression that the "blinding" in the study precluded the investigators from sharing that information with me. I will inquire next visit.
>
> Regarding being "ramped up": At one point in the study they realized that most people may have been on subtherapeutic levels of stimulation. (I believed you referenced this in one of your previous posts.) At that time, they called in many of the patients, and stepped up the stimulation levels. I was one of those.
>
> It's my understanding that Cyberonics has not yet been able to determine if intensity or frequency most correlates with efficacy. Am I mistaken about this?
>
> My healthcare providers outside of the University clinic take NO INTEREST WHATSOEVER in my stimulator. It's as if they do not want to take the time to read any of the information I provide about it, assuming they'll never have another patient who has one. This has been disheartening to me. It's tough getting coordinated care. (Yes, I know, I'm whining a little here.) :-)
>
>You're not whining. It's very interesting - especially the part about the other healthcare providers not caring.
About the revelation of settings, I would think that after the double blind period is over, it's ok to share.
poster:Bob
thread:255190
URL: http://www.dr-bob.org/babble/20030907/msgs/258760.html