Interstim problems

I could usee some advice from anyone who knows about interstim. I really should not complain there are several people that the interstim works great! And Im so happy that they have found relief, but as for me Im living a nightmare! About a year ago my doctor who is treating my over active bladder mentioned putting in a intertim. After several medications that didn't work I finally said yes. The trial worked great! I was so excited! Something finally worked. I finally had relief! Then they implanted the interstim in me. The operation went good, I really wasn't in any pain. I have found the answer. My representive programed it for me before I left the hospital. I went home and started to realized that I had no relief. I called the doctor several days later and jhe told me to come in and they would reprogram it for me. Well it has been reprogrammed about 20 times and nothing. Now several months later Im starting to have alot of pain in my lower back my lower stomach and even my legs. I have no idea why. Im sure it has something to do with the interstim. I want this thing out of me! It doesn't work and causing me alot of pain! I wasn't told by anyone that I couldn't recieve a MRI. Im a stoke patient and may have to one day have another MRI. I don't know. If I had been told that I would have never agreed to have this implanted in me. Question can I have this thing removed? Will my insurance even pay for it to be remove? It paid to put it in but Im not sure if it will pay for it to be taken out. Well I feel better getting all this out. Thanks for listening to me.
Kittyedo

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im about to have it done one wednesday :D i will let you know how i find it i wont sugar coat my views and i wont make it sound worst than it is ! :) hope it works for both of us,
i have fowlers syndrome which is where my bladder has stopped working and not a single drop of wee comes out.

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Yes, I had my interstim removed after it did not work for me. I am back
self-cathing, and I frankly prefer it to the constant pain of the interstim.
My insurance picked up the cost of the removal of the interstim.

MEOC

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I've had mine put in for the fifth time, by a different doctor. The fourth time it was put in, it wasn't even put in correctly. It was stimulating my leg, and when I told the doctor that person didn't really care.
So the this last time when I woke up from surgery and they got it programed it was perfect. I think it has got to do with the doctor you have and how good they are in performing this surgery. Before, I had gone to this doctor I did some research and he was one of the best to do the interstim. If your having pain, it sounds like they don't have the wires in the right position. That's what the first doctor did to me, or the battery would start moving. I hope you can get to working, because it really helped me.

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I have had the Trial, an intial Implant Surgery and then two weeks later another surgery to try and correct the position of the original lead because it was not working (what you described sounds like what was occuring with me). When my Dr. went back in during that second surgery she was unable to re-position the original lead so she put a new one in on the other side. That decision corrected whatever issues prevented the leads from working after the first surgery and I am having 100% success on the Program I am presently using.

For anyone out there who is having trouble please know that sometimes the best answer is to not allow anyone to tell you to give up or just to "settle" for the way things are.

If there are persons on this site who have achieved a normal life (thru InterStim Therapy or some other treatment or medication) despite being aflicted with whatever horrible illness or condition we each have, we all have an obligation to share our experiences with anyone who has not had the same success. I will be glad to discuss my experiences with you (or anyone) either by e-mail or you can let me know if you would prefer to talk by phone privately if that would be better for you. Just let me know.

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All of you have me some good advice! I go back to my doctor next week and I'll be really honest with him about the pain I've been in. I really haven't been honest with him. I'll let everyone what he says. Thanks for all the advice and listening to me complain

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kittydo, I don't think that it is that you have not been totally honest with your dr. regarding the pain. I believe that after years of this disease, we become so used to being in pain that we do not realize the extent of it. Until I had to keep a journal and record the pain level before my implant the pain had become such a part of me that I found it very difficult to give it a rating between 1 and 10. I had to sit and really feel the pain to be able to do so. But please do try to do this as this is truly the only way your dr. will have of knowing what to do for you and how to help you. He tells me to get in touch with my inner self. I thought he was crazy, but I do understand now what he means. I wish the very best for you. Things are looking somewhat better for me and I am about to get over my infection. I will know in a couple of weeks if my dr. will be able to leave my interstim in. Please take care and "get in touch with your inner self."

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Help!!
I had the trial and interstim implant in Dec. 2010. My entire right side pulses, to the point of seizure symptoms-several times. My Doc says that's "normal". The programmer quit, and the Doc agreed to set me up with their new programmer. I think I have lead problems. When I first left the hospital, I did great. It was when I was reprogrammed to program 2 that I started having the pulsing problems. I would say, don't give up; keep trying until u get someone to listen to you. Best to u. fl

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you have got it on too high, when i move it moves with me so some times i have to turn it up or down, i know when its too high as my right leg will get a shock making my toes curl and shack, all i have to do is turn it down and they un curl and go back to normal :)
i only have positive answers for the interstem so far ! im sure it will change like any surgery

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I am not happy with this trial phase. Am using it for bowel problems. Have had excessive bleeding...yesterday the doctor accidentally cut the wire...so now I have to have it put. Monday is the day to decide whether to remove or implant. I might just have them take it out tomorrow. Not happy at all.

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I have urinary retention. I went through the Interstim trial phase and it did not work so
my urologist removed it after two weeks. I am back self-cathing and I prefer that to the
ineffectiveness of the interstim which caused diarrhea, pain, and discomfort. Thank God
my urologist did not insist on my keeping it in. If it does not work, have it removed....

MEOC

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