Interstim Think before doing

[drgumble]

I was Dx with IC 2002. Had trial of interstim Jan 2004. I ended up with an infection and the unit had to be removed. Was in the hospital 2 weeks
Just seek knowledge and skill of the MD. MedTronics has an interest in the procedure to make profits and not investigate the failures. I have contacted the company and have saved their emails.

Someone from MedTronics was in the operating room during the trail phase but they were not there when things went sour.

Think about this before you decide that nothing else is working and you start to think "why not give it a try". I was unable to work for a year or get my IC back to where it was before the trial of interstim.
gumble

[Katrina]

:welcome: to the ICN! Thanks for sharing your story. The interstim is a big risk and getting the best doctor is the best way for it to be successful. I believe that is true of all nerve implants. So very sorry you got an infection....what kind of infection was it?

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[XoChelsey03Xo]

I have the interstim and it works really well. I really enjoy it too. I got an infection with my trial, but was put on antibotics to get rid of it. I don't hurt hardley at all. Sometimes I'll forget it's there and jump in a chair and thats when I start hurting again. I think everyone should try it (if they want to). I thought the trial was horrible, but the real one isn't bad at all. I'm sorry you had such a bad experience with yours. Everyone is different. Chelsey

[dancemomof2]

Mine is doing wonder, the first thing listed in my consent forms was the risk of infection........... Iknew this ahead of time, I was also give a preventative antibiotic the day the trial was put in to take at home. Once again this is all in what we signed saying we understood the what if's of the procedure.

[ICNDonna]

I'm glad you are back to the "pre-interstim" you and sorry you had to go through so many problems. I hope you'll find some other treatments that work well for your IC.

Donna

[DebbieB]

Hi gumble;

I am so sorry to hear of your infection and having the unit removed...

All I can say I agree with Leslie it is all written down in the consent forms..
Our body some time can reject the device and we are all so different in this procedure as of matter fact in any kind of procedure ...

I wish you all the best on finding other treatments to help you with your IC..

Hugs, Debbie

[patricia1]

I all. I also believe that hard thought and planning needs to be done before you get the interstim. Yes all that is written down in the forms you sign, but what about failures that happen after the surgery and you heal. Like toe curling major shocking to where you have to turn the unit off just to move your leg. I have had the Interstim since 2001 and I am going in next week to have a revision done. I was told by my doctor who did it all the problems I had were normal. During this time I lost my insurance and he wanted nothing to do with me. I think all she was trying to say is there are failures and well as people who have had the best of luck with it. The interstim is not a device that is to be taken lightly when considering it. People MUST think ofo the short term benefits as well as the LONG term benefits. What happens in the future. The interstim is not like a medication you can just quit taking. I have had a unit in my back that has not worked in over a year and it has been turned off since that time. We just want people to think long and hard about the product, because she is right when the going gets rough usually medtronics and sometimes the dr will not be there for you. I am having to have another dr redo mine. Sorry if I have offened those who have had reaped benefits from it, but I must speak out for those of us who it has not helped at all.