INTERSTIM INFO PLEASE READ

[tigger_gal]

HI Everyone,
There have been alot of post with the question of is the interstim for pain... NO... it is not it is for frequency and urgency. Medtronic dose offer a pain device but I do not know if it is for patients with IC... I took the time out today and called Medtronic and told them that I could not find any where on the site where it states that the interstim is not for pain.
I then was told that any patient with or with out the interstim can call
PATIENCE SERVICES at 1-800-510-6735 (option 5)
at any time and ask questions regaurding this product... I hope you find this info helpful.
Brat

[Teri]

Despite Jill putting a post above this topic, despite tons of us who have gone thru the implant only to report that it DOES NOT help with pain we still have dr's claiming they have had luck with helping their pain patients. So, being as sick as some of us are, we decide to listen to our dr's, who have not even experienced IC let alone the actual implant, instead of the many many people who have had actual experience with this problem. Reports are suppose to be coming out regarding the sucess with the implant.....well, for the first 18 months, I was a sucess...for the next 20 months, I was NOT so where do you think my name will go???? I am sure it will be counted as a sucess, even tho it was a failure. What are your thoughts on that eek eek Will I be the liar or with the reports lie cussing

It breaks my heart to the point I cry when I hear that no matter how hard we have tried, someone decides we don't know what we are taking about and they go ahead with the implant only to be torn apart with the emotional heartbreak of it doing nothing to help their pain.

So many of the people that have tried to help with this subject have quit banghead because they felt it was hopeless. Because of that, we have lost alot of people with alot of great wisdom to share.

I have had 4 3/4 years of actual experience with the device (which I had removed a little over a month ago) during that time I had 18 woonderful months where it did help with my urgency and frequency and some of my retention too....it did not help with my pain. I wish I had a dime for everytime I've posted these words.

We all want to be different. We all want to be the one who beat the odds. Then, we end up just being another statistic and it sucks. But, it's reality.

Brat (Cindy) has done a great job trying to hammer this into the heads of desperate patients. And, for what ever it's worth, I will be right there beside her. I know how lonely this was when I was beating this drum alone....I refuse to leave her alone

We all want what is best for each and everyone of us. That's the most important thing.....now, if we could only get people to listen

[tigger_gal]

Thanks Teri kissing
Did you contact the fda and report that your interstim quit working after 18 months? I would I think we should all the the actual facts about a METAL device that goes in our bodies, and if by some reason my quits working I'll be on the horn to tell you... I suggest every one with a failed device should contact the fda... those of us who are still working I'm happy for you ( and me too wink )
I still await a reply I have contacted medtronics and asked for a 5 year success rate.
Brat

[Teri]

Yes, I did file a complaint with the FDA. Not so much for me as for the next girl coming along. I did not keep my device. I had no interest in keeping it. For me, I think it was just something that wasn't meant to be.

Now, I need some prayers so I can get well enough to get this MRI so we can see exactly where this horrific back pain and spasms are coming from. They weren't there pre-interstim Kinda scary sometimes, huh? Eventually I will get some kind of answer. Even if it's not the one I want

[ICNJess]

I posted at a different Interstim place, but I just wanted to say, good luck to Teri on finding out what is causing her back pain!!! I hope you find some answers REAL SOON!!! And, I hope it's nothing complicated or bad.

Hugs,
Jess

[jd]

Brat: I agree with you that the interstim is not for pain, just for urgency and frequency. I am one of the first to tell people who are considering the interstim that it is not for pain. My uro never told me that it was for pain just for urgency and frequency. My Medtronics Rep. never told me that it was for pain, just for urgency and frequency, But I am one of the lucky ones that it does help with the pain of my IC along with the help with urgency and frequency.

I also agree with you that doctors should not say it helps with pain.

I am so glad that the interstim is working for you. Mine works wonderfully and I now have a life because of my implant. You can read my story under patient stories.

Jane D.

[tcbc1989]

Hi to all,
I am a success story regarding the Interstim device. I had it implanted in June for retention problem and with some reprogramming at the doctor's office: I no longer have retention. My doctor made it clear to me, before the surgery that Interstim is not for pain, but for the symptoms that you all have mentioned above. I am a petite person, with very little body fat in my butt, so I do have some discomfort when sitting a long time. My husband bought me this great pillow to sit on! I actually participated in a Hula Hoop contest this week-end (I was forced by my 13 yr old daughter!) and won because the Interstim box bulges out a bit and kept the hula hoop from falling off!!!! Anyway, I wish all of you good health in the days ahead. Interstim is not for everyone, but for some it can make a huge difference. I know I have only had it a few months, but cherish the fact that I can pee without a problem. Good luck to all....Tina C. grouphug grouphug

[Katherine]

no it not for pain I am in so much pain I could scream but no one will listen to me.
I am able to the point of wits end.
Katherine

[tcbc1989]

Katherine,
If your doctor does not respond to the issue of the pain you are in...and yes...the pain is real, then maybe your medical doctor can help, pain management specialist or even a new urologist that understands IC better. I even went to a physical therapist that dealt primarily with IC issues and women's health....don't give up...find a doctor that will listen!
Tina C hi

[deborah b.]

KATHERINE THERE IS ANOTHER DEVICE OUT THERE THAT IS CALLED THE ANS THAT IS USED FOR PAIN. DEBORAH kissing