Rules for POSTING in this forum! - Interstitial Cystitis (ICN) Support Forum

***icnmgrjill*** · 03-15-2004, 09:17 AM

This board is for the discussion of complications. Patients who post on this board are having problems and they need support for their problems. Please offer them support and encouragement. Please DO NOT defend Interstim as a therapy. Please DO NOT tout it's successes. We already know it's available. We already know that there ARE real successes. This board isn't about that. It's just to be there for people who are having problems.

Similarly, our Neuromodulation Success Board is for people who have great stories to tell about their therapy. For that board, patients should be sharing their success. Patients needing support for complications should not be posting there.

Let's keep these two topics seperate AND remember that we're NOT debating Interstim as a therapy. I admit that it's a viable option for SOME patients. We're are here to encourage each other and to help those who are feeling bad, feel better.

One last thought: Let's just remind each other, yet again, that none of us has the right to JUDGE anyone else in this forum, nor should we ever question their experience. We don't live in their shoes. We haven't carried their burdens. We haven't sat in those doctors offices with them. Thus, we have no role nor responsibility nor right to question anyone elses experience. Please give everyone the space to discuss their failures... without making them feel like they have to justify it. WE can't justify accidents... nor can we justify a device or surgery that doesn't work as it was intended.

Jill

ICNJess · 03-15-2004, 09:21 AM

I couldn't agree more, Jill, especially after our long talk today. We are a family, and need to support each other.

Hugs and love,
Jess

Teri · 03-15-2004, 02:00 PM

grouphug grouphug grouphug

tigger_gal · 03-17-2004, 03:53 AM

I agree whole heartedly.
Brat

carly · 03-17-2004, 08:33 AM

I think that is a great idea, I do get frustrated when I read about sucesses on this board, it is very depressing for someone who had a failed interstim, like me! I don't read the success board for that very reason. When I come here, I am looking for support and giving my story. I know there are success stories, I just don't want to hear them when I am in here.

Teri · 03-18-2004, 05:06 PM

{{{{{Carly}}}}}you can e-mail me any time if you need to talk......gramini@aol.com

tons and tons of gentle hugs:blink:

littlebear · 03-19-2004, 04:12 PM

Hi Carly, It must be so rough to have to go through all of the physical and emotional difficulties that come with interstim failure on top of all the difficulties that already come with IC. I hope that you know that we're all here for you and will continue to be for as long as you need us (and after that too!). Sending you gentle hugs and all my best wishes, little bear

beachbumleta · 05-17-2004, 08:41 AM

hey
i still have the temp leads in - will get them out wednesday - and have to decide on whether or not i want the premenant implant - i live in the tampa bay area and really like my uros but i have been diagnosed for 13 years and am 55 and don't know if it is something i want to try.......i try very hard to stay off the pain meds however everyonce in a while i have a pretty bad few days and need to just take it easy - i have pretty much learned to live with the cronic pain and frequent bathroom visits - i am still working at a very stressful job - which i love - and i notice when job gets bad - ic acts up! i just don't know whether to wait a while or not - what do you think?

***dyno*** · 05-17-2004, 09:15 AM

This is only a decision you can make for yourself. One thing to remember is that Interstim is not for pain. Some people do get pain relief from it but if that is one of the things you are looking for a permanant implant to help, that might not happen. It may help with the frequency. Did your temp implant help you at all?

If you decide you don't want to do it, maybe you can try something else again. Interstim is not for everyone. Stress can also be a really big trigger as well as diet.

I urge you with your uncertain feelings about this to talk to your family and your Dr. and make sure you are comfortable with whatever you are going to do.

I wish you well.

TheresaD · 05-17-2004, 04:55 PM

What amazes me about this site, are all the people who, like me, have had problems with their implant. To hear it from my Uro, I'm the first one in the history of the world, to have this happen to me. Wednesday I'll go in for the 3 time and have the process start all over again. It's so nice to feel like I'm part of a larger group when I come to these boards. The pain that I've endured over the last year can only be understood by those who have also experienced what I've gone through so I'm glad that the forum is here. Thank you for that.
My question is, if there are so many mechanical problems with the interstim implant, why is there no information about it anywhere but here? I've looked at other places and there doesn't seem to be any information on implants that have failed.
And another question. When I have my original implant taken out, shoul I request that the Uro send it to the FDA to test it? Should I write down the serial number and then check up to make sure that it has been done? Some light needs to be put on the problem so many of us are having. I just hope someone will listen.
Theresa

Teri · 05-18-2004, 07:22 PM

Theresa, I hear your pain and anger loud and clear. My dr also acted like I was the only "problem" child he had with mine. But having him take it out was the best decisions I've made and even tho I still feel like total ****, I do feel better. I believe with my whold heart that my body was trying to reject the device and once it was gone my fibro pain wasn't as bad and the other aches that I was having have been cut in 1/2. I could have a hundred dr's standing infront of me telling me that "it's not possible the implant was causing you problems" and I'd call every one of them a **** liar. I am 53 years old, lived with this disease all of my life and I Know what my body does and does't do. I don't need a **** dr telling me different.

This is my own personal opinion but I have seen the new implants....they won't be approved for about 2 years and if anyone is thinking about having it done and you can hold off for the two years, I'd do it. It is going t be so much smaller and less invasive and I really do think that is going to help the patient and the recovery time.

I think that those of use who have had a implant fail and pretty strong people cuz here we are.....still talking and not laying in a bed giving up! We ALL deserve a huge pat on the back for knowing that we did NOT fail. The device failed us

ktrncl · 04-20-2005, 01:51 PM

I was just wondering if any of you guys have had alot of pain with this thing because, I have been experiencing alot of pain in the back where the box is and where the wires are at and in my legs constently I'm beginning to think I made a huge mistake due to the pain.

carly · 04-20-2005, 02:40 PM

I had nothing but problems, it was shocking me, causing pain, and no relief from the frequency. I have a lot of pelvic pain and the medtronic rep told me AFTER I had the temp. implant in that it doesn't usually work for pelvic pain.

pittypat135 · 04-20-2005, 03:30 PM

I know how u guys feel, i was diagnoised approximately 3 years with ic, i have had the nerve stiumulatoe located, in 3 different locations in my back, was not respoding, so, my dr, has it inplanted in my pelvis area, but, have not responded to that. I am having the bladder removal surgery in a month, hope my surgery goes well. An, for anyone, out there with ic, i can say from experience, having access to a computer, books etc.. has really been benefcial to me. I also, have a counselor, that just talks to people who have ic. And, if anyone, lives in oklahoma, would especially like to visit with u. Well, good luck, to everyone, my prayers are with all of u. Pittypat from oklahoma

southerngirl · 04-26-2005, 03:19 AM

I thought I was the only one who had problems when they tried the interstim with me! When I told my doctor that it was shocking me everytime I moved my legs and that it wasn't helping the frequency--she acted like I was crazy!

She told me that no one else had ever had that happen.
I had residual pain for a while, even after it was taken out, and she acted like that was crazy as well.
It has been almost a year, since I had it done. Even though it was a total failure and it was painful I'm glad I gave it a try. At least I don't wonder if it would have worked, I know it didn't for me.
For those who have had problems, I offer you my support. I hope things will work out. And if interstim doesn't work, don't give up. It took a long time, but I'm now on some new meds and have a tens unit and lidocane patches and I'm very hopeful that this will help.