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For those with an interstim...

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  • For those with an interstim...

    I went today to turn my interstim up because I am having some increased frequency and my remote beeped 3 times fast like it does when it is all the way up or down. I tried to turn it down and it did the same thing. It doesn't seem to be going up or down. Any ideas? Anyone had this happen? I wonder if it is a problem with the remote or the stim? I have had it since March 2006 so it is getting old.

    What do you all think?
    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
    _____________________________

    DX: IC - November 2002 after hysterectomy
    Interstim implanted March 2006 - died May 2011
    Interstim replacement June 2011
    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
    Docs: Pain management doc, urologist, family practice

  • #2
    Have you checked the battery in your remote? I don't like the older remotes as you can not tell if you have actually changed anything or not for sure. I changed my setting Sunday night and didn't feel anything different so I changed it again and by Monday I could feel it was way to high. I would really like one of the new controls with the setting displayed on them You can then tell if you have change it on not. After 5 years I would say that you may need to have yours check for battery life. My reprogrammer says the usually last 7 to 10 years depending on how high you have the settings at.

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    • #3
      I talked to a medtronic rep today and it appears my device is in a power down mode where it resets all settings to zero when someone gets dangerously close to a significant magnetic field. I have no idea what that could have been or where I was that would have caused the device to do this. The rep said it is a self protection mechanism within the device. She said also sometimes it will do that when it is beginning to mal-function - again to protect the patient it just powers down. Now I need to find a doctor to look at it. My doc is in Texas but we have moved to Oklahoma now so I need to locate someone close to me to see if I need a new one implanted or just to reprogram this one. My settings have been basically perfect for a long time now so I'm worried this will be the beginning of trouble. It was hard getting it all perfect!

      Just FYI for anyone else this may happen to...If it won't turn up or down it has probably zeroed itself out!
      Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
      _____________________________

      DX: IC - November 2002 after hysterectomy
      Interstim implanted March 2006 - died May 2011
      Interstim replacement June 2011
      Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
      Docs: Pain management doc, urologist, family practice

      Comment


      • #4
        There are about 3 doctors that I know of here in Oklahoma City that do Interstim placement and reprograming. One is Daniel Culkin at the OU Med Center. He is the one I see. One of his associates also does Interstim. The other ones are Dr. Parkhurst in Bethany and Glenn Coles of the Urology Associates near Mercy Hospital. There may be more now but those were on the list Medtronics sent me in 2006. I didn't think any magnet except one in an MRI machine would effect an Interstim. I didn't think they were powerful enough to do any damange.

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        • #5
          I know what you mean by this may be the start of trouble. My settings had been almost perfect for about 3 1/2 and all of sudden last November things changed. What once control my symptoms wouldn't anymore. We had to change where I felt the stimulation and it just isn't the same. We think this was caused by scar tissue getting over my eletorde. I been doing adjustments myself (up and down) since December and still feel it's not just right and may never be. I thinking about going back and talking to the reprogrammer again.

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          • #6
            I want to post about my doctor appointment and Interstim implant.

            I have been put on a 3 month waiting list for a trial Interstim. The specialist I saw tells me that not only will it help with my IC pain, he said it would help with my chronic pelvic pain, my back pain and help my bowels. He said i am a good candidate for the device. He said it wold also help with my bladder leaking : )

            The doctor at the Pelvic Floor Center in Minneapolis tells me basically I have nerves that are miss-firing and they are sending messages of pain to my brain. He says that these nerves some how start sending the wrong message.

            I have PFD and CPP, my exam hurt but went fine.

            I do not want to wait the 3 months if it will help me with all of these areas of pain.

            The doctor tells me my Burch or what he called 'a bladder vault suspension' is still intact, he believes my bladder tack is also holding.. He doesnt want to go in and operate or remove the scar tissue. He says i am at the age where i should start menopause so when that happens the endometrosis will stop growing.

            I had POP in 2002.

            This doctor is going to try to set up some PFD pelvic floor PT : ) I live in Rural ND so this part may be difficult to get a PT with pelvic floor experience to come here. Diagnosed with PFD on 5/25/12.

            I also had a bladder scope and the Dr. gave me some peridium s.p. to numb the bladder and an Rx of Tramadol...it seems to help some.

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