Interstim Boards~Jill PLEASE think about this!

[Teri]

How about the topic "The emotional involvement of the Interstim Device"

I sure could have used this when I went thru the staged trial. My pain was so bad that I cried for the entire 10 days. Was given strong medication so that I could sleep. My dr was calling me every day to make sure that EMOTIONALLY I was okay. It was a nightmare that I was totally unprepared for. And, I know others who have gone thru the exact same thing.

I can't see Medtronics allowing a message board. It would end up costing them money. They aren't providing enough information literature to the uros so how could we depend on them for a message board? I see my uro once a month and medtronics has NO info setting out. Yes, there is a big picture explaining it in one of the rooms but there is NOTHING setting out for people to read or look into.

I know that since this board started it's been like needles being pushed under your fingernails Jill but somehow there has to be a middle ground.
And, somehow that ground needs to be found without deleting or editing posts because those posts involve real feelings.

thanks~

[KBee42]

I will second the very articulate request that Teri has made.

As sufferers and consumers I think that every one of us should have a safe place to be heard. I am a firm believer in the idea that education and shared information is healthiest for everyone.

This is a private website, and of course you can ban or delete whatever you like and I know that. But it seems to me that by deleting any post about this device, whether good or bad, defeats the purpose of the website all together.

An informed patient is a much healthier patient, and most of us only have anecdotal evidence to go off of.

It breaks my heart to see any post deleted. The pain, both in favor of and against, seems to me to be very real. If this site is here to be an aid to women dealing with all aspects of IC the deletion seems counterproductive.

That, of course, is just my humble opinion. I think that Teri phrased it very well.

[dyno]

As a IC'er who has not needed anything like this, I have to say that I also see the need for both good and bad to be heard. I have depended heavlily on this board the last few months for information. Yes, I can get it other places but it is just the facts, or biased. Here people can hear the real story, I have seen both bad and good posted on this. Even though I don't use it or see the need, I want all the information I can have. My uro who I saw in July did mention this and I have no need for this so far but welcome this info.
So even though this is not something I know anything about I do understand the people on here who feel as strongly as they do, especially with something that there is not a lot of info out there about.
Jo

[ICNDonna]

If you have questions about any post being deleted, please do contact either me or Jill. If a post is deleted, it is because it is not within the posting guidelines for these boards. The most frequent cause for deletion is advertising. Occasionally one is deleted because it is critical of another person's message. If you see a message that troubles you, please contact Jill or me --- it's best that you don't respond.

Any time a message is deleted, the individual who posted it is contacted and the reason explained.

Donna

[dyno]

I want to clarify my feelings on this. I don't have a problem with those running the board to delete those that do what Donna said, the advertising etc. I also do not want people to be hurtful to people. What I feel the purpose is all about is to educate and in that conotation I want to see the good and bad post, so that I can make up my own mind. I do not want to see anything that goes against the board policies.
Jo

[Kara]

That sounds like a great idea Teri and maybe emotional support for major surgeries as well!


Thanks for thinking of that!

Kara <img src="graemlins/blink.gif" border="0" alt="[blink]" />