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Should I take it out

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  • Should I take it out

    I have been having a burning sensation around my lead. I saw my doctor today. He suggested that I turn it off for 2 weeks and see if I can live without it and then have it taken out. I don't know what to do. I just had it put in July 22. Personally, I feel that the lead has moved and it just needs relocated.
    West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
    [email protected]

  • #2
    Hi Rad,
    I haven't had time to sit and think long enogh to post. and forgive me if i type this *** backwards.. I just got home from uncle dons veiwng.... I had an appt wed to go and get my interstim re-programmed and one of my leads has shorted out. I have had mine off to due to sharp pains... I have to go get x-rays, because I have lost so much weight that my device moves and my wires are literly just under my skin and moveable. the nurse said this may be the cause.. I also told her I get burning and itching around the box... she is going to call me on monday when my dr gets back... due to uncle dons passing I cannot get to the hospital for my x-rays.... so I think my lead has moved too, because i lost so much weight.... ask about x-rays and if it hasn't moved and its been tested with there equipment and it is working fine.. (???? wil show up on there medtronic equipment if the led is not working) and you still are burning and it hurts take it out.... I will let you know what is going on with mine when i find out...
    hugs to you
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Sometimes the wires can move--especially if you lose weight. Remember, not all of the leads are sautered in place--there is a new self anchoring one because the old ones moved so much. If the device is working well for you, give revision a chance. Brat, my rep said that your doctor has the highest volume of implants in this area. He is really a respected doctor. The burning sounds like what I had. The wires were no longer waterproof and just had to be replaced at the junction. Its not as big of an ordeal as the original surgery. The Medtronic reps can tell on their computers whether the leads have moved, shorted, etc. Not all the doctors have been trained to do that. I'm sorry you're having trouble with it. I am so happy that I have mine, but it has given me trouble. It is still hands down been the best IC treatment I've had.


      • #4
        RadStudent,Just to let you know that I have had my interstim about 7 weeks now and I still have pain around both sites. but it has helped me so much with frequency that I try and tolerate it.i know the frustration though..Hang in there if you can Sandy


        • #5
          For my revision it took a very long time for the pain around both sites to stop hurting and burning~
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


          • #6
            I can concure as well that the pain around the sites lasted longer than two months for me. After three years I still have days that are itchy and a dull ache around them.
            Good luck!


            • #7
              I will be praying for you rad. Just hang in there. If it is helping you with the frequency and urgency I suggest that you keep it. It is your body. I will support you no matter what you decide.
              Hang in there , There is hope.
              There is hope. Prayer works.

              Love, Debbie


              • #8
                Hi Louise,

                This is one of those times when I get SO ANGRY that the company has not released their long term data about interstim. We just don't know if this is common, and what is normally done about it. The FDAa required that Medtronic provide this data last year but, apparently, it is still unavailable. So, without that missing link, it's awfully hard to make any decision at all.

                So, #1... Ask your Medtronic rep where the long term data is. You'd like to know the rate of revision surgery and what the prognosis is if you have the lead moved. (i.e. will it move again?)

                #2. Ask your doctor why he thinks it should be removed versus relocated? Has he seen poor results with relocation??

                #3. Device removal is likely easier when there is less scar tissue. So, the longer it's in, the harder it may be to take out in its entirety. Some patients have reported that the device was "chipped out" around the scar tissue and thus left fragments of leads in their backs. So, an argument could be made for having the device removed earlier rather than later.

                Good luck and please let us know how you're doing.

                Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

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                Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


                • #9
                  I am going to talk to my urologist tomorrow to see what he thinks. I do have a call in to Medtronics to get their take on it. So far they have not called back. My frequency with interstim on is still better than it was pre-interstim, but it has tripled what it was immediately after. I have had it turned off since Thursday and the burning has disappeared, but the frequency has increased back to almost what it was before interstim. I will leave it off and see what happens.
                  West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                  [email protected]


                  • #10
                    rad, I havent gone for my x rays yet due to my uncle passing i will let you know as soon as i find out......
                    'The will of God will never take you where the Grace of God will not protect you.'