Challenges with Nerve Stim: getting quality care

[Megan]

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

[justdeb1]

Megan..welcome to the ICN I was like you a few years back..but have returned to the ICN because here is the only place I find that others can understand. I can voice my opinion and bi*ch and complain all I want (unless Donna edits me ) Anyhow...I'm glad I came back. I've "met" so many great people on here..and the support is helping me tremendously. I hope you give it another shot and things get better for you.

Brenda: I emailed you about the SCS. I dont know if you got my email...but can you tell me about it? My new pain dr. wants to do one and I cant find anyone that has had it done. My email is [email protected]

Tell me all the things..good and bad okay? I need to know..even worse case senario.

hugs to you both
deb

[icnmgrjill]

Hi Megan,

There's no war here. You'll see that we have message boards for patients like you who have successes... and we also have a board for patients who weren't as fortunate.

It took some time for me to decide how to approach this. Yes, interstim has helped some patients.. and it has also failed in others. Finding a balance between the two groups of patients (each with very different opinions and needs - often equally outspoken and demanding) has been incredibly difficult. It was impossible for me to make everyone happy.. but I think that we've found the best compromise possible. Please refer to my earlier posts about the formation of these boards.

You are more than welcome to share your story in our success board.. and hopefully you will inspire someone to explore this further. You are a great example of a pro. But they also need to know what other patients, with far less successful (and, in some cases tragic) outcomes, have gone through so that they understand the risks of this procedure.

As an example. I had a mother call me recently about the treatment that her son received during an interstim trial with another doctor. She was irate. The doctor had, apparently, told him and his mother that there would be no pain just that morning. In fact, he screamed so intensely during the procedure that his family was shaken. Worse, the son became depressed and severely despondent after the procedure.

I don't know what I could have done other for anyone involved in the Univ. of Colorado issues other than refer people to Medtronic to find another doctor experienced in Interstim. One patient in Colorado worked for a newspaper and tried to do a story on it. I sent several patients her way with the hope that she would start a support group and get more involved. Luckily, in the last two years, hundreds of doctors have now been trained so it's much easier to get care for implants.

I'm happy to talk with you by phone about the letter. Feel free to call me collect. (707)538-9442. The petition was circulated by patients. I had heard about it since its inception and the copy I received was, I believe, provided by one of those patients.

Jill