Interstim Re-implanted

[yorkiemom]

Someday I'll post my long dreary story about my interstim failures. Dont have the heart to do it just yet. In the meantime, I saw a uro today who told me over and over that I need to have my interstim re-implanted (he didn't put it in; another uro did the surgery) because it is likely that it has moved. I never turn it on anymore--haven't tried in probably a year. It just never helped me, even though the trial was most promising. I can't face another surgery--the first one was 3 1/4 hours long with a horrible night in the hospital dying from the pain of the catheter and the surgical site, then weeks of recovery before it finally was turned on, all to no avail. And that's only part of the story. See why I can't get excited about having the surgery re-done? So here is my question: has anyone out there had their interstim redone? Did it help? Tell me about the surgery, what was that like? Thanks so much . . . p.s. I had interstim done in Oct. 2001; I had the battery replaced in 2002. Have never got one minute's relief from it.

[patricia1]

Yorkie I am in the same boat you are. I had mine put in Sept 2001. It worked fairly good for about 7 mths to 1 yr then has worked like crap since. I had 2 rear end wrecks in one day a little over a year ago and Uro (like you different one than who did surgery first time) also thinks lead wire was moved during that time. Before that I had major left foot toe curling all toes would curl under when unit was on. Then after wreck when I need to have BM the unit would shock my left leg and I would have to turn it off just to get up or move I really could not move my leg at all. My test phase worked best for me also. I also have lost over 35 pounds since I had it implanted and the unit sticks really far out of my waist area now. It really is a pain. I am not happy about the revision either but I will try again and if it does not work this time I want it out. I just got my medicare (from SSD I am on) in Feb and during the last 1 year or longer I have had no insurance so the uro that did the first surgery refused to help me when I started having problems. He even said all of that was normal. I had many many adjustments also and after the first few months it was in my symptoms slowly started coming back. My revision is scheduled for April 7 so far. I to have concern...bout how long I will be down this time since I am sure there is scar tissue and stuff now. Best of luck to you sounds like we are in the same boat now and how ironic when had ours done the first time it was around the same months and stuff. Blessing to you

[patweb]

It was quite interesting to see I am not the only one that has to have the interstim re-implanted. I got my implant after what I thought was a successful trial in April of 04. I'd had several adjustments do to it not working properly and when put on a higher setting it was extremely painful and my toes would also curl up and my leg would become completely straight. So after several of the adjustments my interstim was taken out in January of this year and I am contemplating when and if I will get it again. My doc wants to but I'm not sure and besides my only caregiver who is my husband is stationed in Iraq now and has been for quite some time he did however come home for the surgery in January and will have to come home for the next two which would be back to back pretty much. It is something that I have thinking about real hard and I haven't decided yet. I have just prayed about it and let GOD guide me to make the right decision.

[yorkiemom]

Oh, man, getting that device re-implanted, I just don't know whether I can go through the surgery again. This is hard to believe but when they brought me back to my room, the bed broke--the head and foot was raised up which meant my butt (with the new surgical incision along with the Interstim) was down in a HOLE. They were unable to fix the bed so I could lay flat and they wouldn't move me. And the buzzer for the nurse was on the right side of the bed; they had me laying on my left side so I couldn't reach the buzzer to call for help anyway. I screamed for them to take out the cath, but to no avail. In the morning, after not sleeping all night from the pain, my husband dressed me and they sort of threw me in the car at 9:00 a.m. for the 100 mile ride home. Then the device never really helped anyway, finally had to have it taken out and re-done. But only after the doc told me over and over to leave the programmer alone. I kept telling him that I hadn't touched it, but he wouldn't believe me. As it turned out, the battery was dead and had been for many months. He kept accusing me of turning it off. The re-implant is another nightmare, saved for another post when I get up the nerve to think about it. So . . . is the surgery easier now? Is the device smaller? Does the surgery still take so long? Do they have more definitive ways to tell where to place the leads? I'm sorry that you guys are having so much trouble--I did have numbness in one leg which freaked me out for awhile but it went away. We're all in this together, huh? Wish I could help you more . . .

[Rowena]

Here I am,
I had the test interstem, with promising results. I had the permanent one put in and...it moved away from the spinel cord area. When they went in to redo it, I had adhesions on one side so they were only able to put it in on one side. But the good news is, when I need it, it does work. I could tell you some horror stories about the actual third surgery, but you don't need that. The main thing is I did redo mine and I'm glad now that I did. If you get up the nerve to try again, maybe you should do some real research on Dr.s. some have more experience than others. The Dr. who put mine in, was one of the pioneers of the proceedure for IC. He is really highly experienced, that is why I when with him. Actually, the pain specialist I was seeing sent me to him, because he said, He's the best. Good luck.


Someday I'll post my long dreary story about my interstim failures. Dont have the heart to do it just yet. In the meantime, I saw a uro today who told me over and over that I need to have my interstim re-implanted (he didn't put it in; another uro did the surgery) because it is likely that it has moved. I never turn it on anymore--haven't tried in probably a year. It just never helped me, even though the trial was most promising. I can't face another surgery--the first one was 3 1/4 hours long with a horrible night in the hospital dying from the pain of the catheter and the surgical site, then weeks of recovery before it finally was turned on, all to no avail. And that's only part of the story. See why I can't get excited about having the surgery re-done? So here is my question: has anyone out there had their interstim redone? Did it help? Tell me about the surgery, what was that like? Thanks so much . . . p.s. I had interstim done in Oct. 2001; I had the battery replaced in 2002. Have never got one minute's relief from it.

[chuckie_1979]

Hello

I have been desperatly seeking advice from other Interstim patients. I had my device put in about 13 months ago. I was diagnosed in 1999 and have had symptomes since I was 5. My IC took a turn for the worse and was not responding to treatment. After 3 specialist told me everything else was ok my doc told me we should try Interstim. The trial was promising. Since then I have been getting terrible pains and the implant site and the oh so wonderful shocks down the leg. This January my new gyno found a grapefruit size cyst that the first gyno overlooked. Since it has been removed I have turned my Interstim off and have been feeling better or should I say I feel similiar to the way I felt before. My IC is still a nuisance but nothing like before. I talked to my doctor and inquired that I would like to start the process of removing this device. After waiting in his lobby an hour after my appointment he sat down for not even 5 mins told me he didn't think it was a good idea to remove it and it just needed adjustment. He also commented that it was a 25,000 dollar surgery and once removed insurance will not pay to have it replanted if I ever need it. So here is my question...has anyone had the same experiences? If anyone wouldn't mind disclosing their age I am wondering what the long term maintenance on this device is as I am 25 year old female (chuck is my nickname) and hoping that I am around for awhile I am wondering how many future surgeries there will be. I am basically just looking for any advice and would like to thank those who respond in advance.

[happy lou]

hello Chuckie i am 51 years young lol and i wanted my dr to remove my interstim but he wanted me to leave in he said there is a new battery coming out that will make it better but we will see he said that i would not haft to pay for it that the only good thing about it so at this stage of my life since every thing else has felled i will just about try any thing to get relief. Eva