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I need to vent!!!

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  • I need to vent!!!

    My InterStim was implanted on 10/31/2003. It worked well in the beginning, but two weeks ago, my frequency was back. I thought it was part of my PMS cause my frequency used to increase a lot a week before my period and back to the normal (14-16 times a day) when my period started. Today is the third day of my period, I still have the frequency. I need to go every half hour. I just had my InterStim reprogram last Monday. I didn't think my urogyno and the rep were listening to me.

    I am in a clincil trial here. The doctor and Medtronic rep will see how I have been doing during six months. Both of them think it is a successful surgery. But according to my voiding diary recently, I don't think so (back to 18-20 times a day). I don't know if it still doesn't work for me after six months, will my dr agree to remove it? I had had 5 reprogrammings and some helped in the beginning but then failed. I don't know what is wrong. I still feel the stimulation in the same place which is around my lower back. I am so frustrated now and afraid if i want it out in the end, my doctor will be mad at me or refused to take it out.

    I really don't know if this is a right decision. I just think my story needs to be told here. Things can be so unpredictable with this device. Please pray for me, I really need it right now.

  • #2
    I will definitely include you on my prayer list.

    Warm hugs,
    Stay safe

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    • #3
      I hope that you can find something to work for you. Praying for you too.

      Jolene grouphug

      "Life is what happens when you are making other plans" John Lennon

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      • #4

        I hope everything goes well. Your story needs to be heard!! Prayers for you!!

        Hugs and love,
        Jess grouphug kissing angel
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


        • #5
          Definitely prayers winging their way to you, and hopefully things will get worked out. Please let us know how you are doing, and sure hope you get the help you need, a hug Iris. grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


          • #6
            Hi Peiti, I'm so sorry to hear that your interstim isn't performing reliably and that you don't feel like your Dr. and the medtronic rep are listening to you (although everyone's story is their own, it sounds a bit like what like Jen was feeling until she found her new uro). How frustrating! Although I'm sure that all the complications are difficult enough on their own, sometimes I think that having a Dr. who is not on the same page as you makes everything seem even worse. I hope you know that we're all here to listen to you and to honor your experience. Plus, we're all behind you 100%. Sending you all my best wishes, little bear


            • #7
              hi I just read your post and I know some of how you are feeling. I have a device from Medtronics also, they tried the device you have, but nothing happened, I could not feel anything but pain. That is because of the arthritis in my spine, so they implanted the pain pump and that was Feb 22 2000. I have only good things to say about it, now it is four years and I will soon have to have another new one implanted, for the battery only lasts 4 or 5 years. But yes I have a lump and can see the corner of the device in my side, kind of like up from the hip bone, only towards the tummy more. I will pray that they can get your device adjusted to where you are comfortable with it and it works the way they told you it would. If for any reason you are not comfortable, tell them it is your body and only you know how you feel. All I know is I am in not in the pain I was before the implant and I thank Medtronics and God for that. Good Luck in whatever you decide. Keep in touch this is a great support group and they will help you.
              Sue from PA.


              • #8

                Thanks so much for the support. I really appreciate it.

                I will probably go into my doctor's office in a week to have another reprogramming. This is going to my sixth in 3 months. I just wish my doctor and the Medtronic rep can figure out what is wrong with me or the device?

                In the past three days, I turned off the device to see if it really helped my frequency. It is really hard to tell cause I did fine on two of the three days. But one thing I am pretty sure that InterStim helps my constipation. When I had the device on, I had bowel movement almost every day without taking (stool softening medication). And now my constipation is acting up.

                I will keep posting to let you know how I am doing with this device.

                I can understand why some people are more cautious about this invasive treatment. There are a lot of complications that can happen. Some of the complications may not be even stated in their website. I don't want to complain any more though it doesn't help me very much but at least I don't have any other problems caused from the surgery.


                • #9
                  Hi Peti,
                  It took a few reprograms to get me right. I lost like 30ish pounds and I thought omg no its not gonna work any more... it did take about 6 reprograms. The best I found I feel it in the preanial are and my butt cheek it comes on for 30 seconds the off for ten thats cycling, they also shut off the magnets becase I was getting reprogramed when I went to stores) most likeley Bes Buy and all eletronic/pc you name it store lmao
                  wishing you luck
                  'The will of God will never take you where the Grace of God will not protect you.'


                  • #10
                    I just went in my doctor's office to have another reprogramming. This time, the Medtronic rep tried a totally different setting. Do you know that there are four nodes on the lead and each of them can send out the stimulation. They name the nodes 0,1,2 and 3. The one closer to your nerve is named 0.

                    My former setting was 0(-),3(+). (-) negative means where the stimulation comes out and goes into the (+) positive. My voltage was 2.9. Now they have me on different setting which only requires a very low stimulation and I can feel it. It is only 0.95. I am very sensitive to this new setting. A small change on my position makes difference. For example, I am sitting in front of my PC with my back up and I can feel the stimulation on my lower back, butt and left leg. If I hunch my back, then I don't feel the stimulation on the leg. Do you feel the same? Do you feel the same stimulation when you sit and stand?

                    I am afraid that the lead might move. But the rep said it was impossible for this new lead to move cause it has barbs that can hook on the tissue. Looking forward to your feedback. Thanks.

                    BTW, do you feel your bowel movement change after the implantation? I have more regular bowel movement than before. Is this normal?


                    • #11
                      My bowels calmed down after I got my implant. There are certain nodes that do nothing for me and the others help a lot. I does take time to get just the right combination. I haven't touched my remote since September...and the only flares I have are during my period. I hope this works for you. I know how frustrating it is to keep having to get programmed--especially when the doctors are new at everthing. Hang in there!