Hello everyone. My name is Megan and I have had Interstim since before it was Interstim. I was a part of the FDA study for it, and actually testified in front of the FDA advisory panel when it was up for approval.
One of the challenges with Interstim that I've run into is that my doctor was removed from his position and was unavailable to continue my care for a period of time. It's been difficult to settle on another doctor, when the one that I was seeing has basically been working with it longer than any other doctor working with the device. Why should I settle for anyone else? MY understanding of it all is that his lack of ability to provide continuity of care isn't the fault of my doctor, but the workings of something larger. Unfortunately, I, and other patients, have had a difficult time finding help in finding the truth.
I recently received a letter from Jill about current legal action being taken against Dr. xxx xxxx and the University of Colorado Health Sciences Center. Jill, I was hoping to run into you tonight in the chat rooms, but it looks like we weren't online at the same time. I have a few questions I was wondering if you could answer for me.
I was wondering how you got my address to send me the letter notifying me about the current legal action?
I am also curious as to why the IC Network has just now decided to take this on? A fellow implant patient contacted the IC Network for help two years ago as we (patients of Dr. xxxx) had exhausted the avenues at the time for trying to get help when Dr. xxxx was about to leave. She was told that the IC Network didn't organize such action and that there wasn't anything that could be done to help.
Please also understand that I am a bit upset. When I came to the IC Network several years ago and was trying to talk about my experiences with the implant, I was essentially discouraged from telling about my success with it in addition being told that it was highly controversial and it was the last resort. I recognize and respect your concern for those considering the therapy, as it is a major undertaking, and like any medical intervention has some risks. But I, as an implant patient, have not felt welcome here and have not visted this site for years for that reason. The implant gave me back my life, and has done the same for many others, and I have not felt supported in that success, and did not in the past find the IC Network to be a neutral environment in which ideas could be exchanged.
I realize that things have certainly become messy in all of this. However, I am hoping that we can discuss this with respect, instead of escalating the war.
Megan
One of the challenges with Interstim that I've run into is that my doctor was removed from his position and was unavailable to continue my care for a period of time. It's been difficult to settle on another doctor, when the one that I was seeing has basically been working with it longer than any other doctor working with the device. Why should I settle for anyone else? MY understanding of it all is that his lack of ability to provide continuity of care isn't the fault of my doctor, but the workings of something larger. Unfortunately, I, and other patients, have had a difficult time finding help in finding the truth.
I recently received a letter from Jill about current legal action being taken against Dr. xxx xxxx and the University of Colorado Health Sciences Center. Jill, I was hoping to run into you tonight in the chat rooms, but it looks like we weren't online at the same time. I have a few questions I was wondering if you could answer for me.
I was wondering how you got my address to send me the letter notifying me about the current legal action?
I am also curious as to why the IC Network has just now decided to take this on? A fellow implant patient contacted the IC Network for help two years ago as we (patients of Dr. xxxx) had exhausted the avenues at the time for trying to get help when Dr. xxxx was about to leave. She was told that the IC Network didn't organize such action and that there wasn't anything that could be done to help.
Please also understand that I am a bit upset. When I came to the IC Network several years ago and was trying to talk about my experiences with the implant, I was essentially discouraged from telling about my success with it in addition being told that it was highly controversial and it was the last resort. I recognize and respect your concern for those considering the therapy, as it is a major undertaking, and like any medical intervention has some risks. But I, as an implant patient, have not felt welcome here and have not visted this site for years for that reason. The implant gave me back my life, and has done the same for many others, and I have not felt supported in that success, and did not in the past find the IC Network to be a neutral environment in which ideas could be exchanged.
I realize that things have certainly become messy in all of this. However, I am hoping that we can discuss this with respect, instead of escalating the war.
Megan
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