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Help - I am so frustrated !!!!

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  • Help - I am so frustrated !!!!

    I need any input from those of you that have had
    interstim and it worked or you have had minimal problems with it and those that have that had major problems – so I am posting here in hopes to get some help with both.

    I was dx with IC in Aug. of 1999 and after many different treatments and meds - in Nov. of 2000 I had the interstim implanted.
    It worked great for the first 3 ½ months or so. Then the unit got fluid inside and was shocking me. So, they went in replaced the unit sealed it with cardiac glue and moved the lead. Since then I have had 5 other surgeries for this back to back. Total of 7 revisions in 2 years. I really tried to keep a positive attitude and tried to work with this in every single way possible. My uro turned this thing off about 2 months ago and I have severe pain over the lead and simulator area. I have questioned this to my uro wanting to know – if this is causing some nerve damage – or something.
    I mean if it is not on then it seems to be that I could cause some damage in there….

    I am really getting frustrated. Not at my uro because he is just a baffled as I am, and I am the only one of his patients that is having this problem. I try to think back did I do something to mess this thing up. But I cannot think of anything.

    Anyway, for those of you that have the interstim – Do you feel like this could cause nerve damage if it is not turned on? Or do you think that I am over reacting?
    Something in there is killing me – the pain sometimes is so severe that I cannot even walk. My leg is numb and tingles sometimes. But most of the time the pain in my hip and right leg are just so bad I would go to the ER and have the cut it out if I thought the pain would go away.

    I am in the process of seeing Rheumatologist and after he is through checking me for RA and all that garb. Then he will refer me to a Neurologist to check for MS – I have to see the Rheumo first because of the interstim – cause if they still suspect MS then I will have to have a MRI which means more surgery (Yeppie) to remove the interstim so they can do an MRI.

    I am sorry ladies I am just so frustrated and confused I really do not know what to do.
    I am sorry to have ramble like this but I am at the end of my ropes with this, it seems like I take two steps forward only to take four steps backwards.
    I am sure all of you understand that concept.

    Thanks for listening and any info is appreciated.

    Hope all of you are having a tolerable day !!!!

  • #2
    I also had the interstim. After a complete revision(to the other side), it helped for about 3 years. It stopped working and I didn't want another surgery to revise it. I had it removed so I could have an MRI. I do feel better with it out. I didn't have any pain down my leg though. It just hurt when I bumped the unit on my hip. Good luck to you. The interstim seems kind of like an art- you know, if they can find the exact right place.
    Take care, Julie [img]smile.gif[/img] [img]smile.gif[/img]
    "Don't sweat the small stuff."


    • #3
      I'm sorry to hear your story!, and sacared too!!!!, I have an appointment in a couple of days to check what is wrong with my interstim. I think I will need a revision, I had the implant done on october last yr. and after a lot of adjustments, I don't feel any improvement in my urgency and frequency. I hope I don't end as you.
      Have you talk to Meddtronics, or to another urologyst for a second opinion?


      • #4
        I've had the interstim in for about over year. About 4 months after it was implanted last April had it reprogram about 5 different time with very little results. I had X-rays done to see if it was out of place. The doctor did another test study in July on my right side but he decided to put in another spot on my left side where it was done first time. So, I've had the revision done in Aug. 2001 but I've had it reprogram about 8 times they told me there is no more reprogram that they can do. I't works about 50% for me for the urgency.

        I just found out that I have arthertis in my lower back where the lead is implanted. So, I'm going back to the doctor tomorrow to try to get reprogram. Has anyone have 2 interstim implanted? I thought might ask doctor about that.