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  • #1

    Interstim Second Stage

    Well girls, I've gotten my interstim implant. My surgery was on March 9 and it's been almost 2 weeks since I've had it. Doing pretty well with it. My only complaints are it hurts like heck, I can't wear my jeans and I'm not able to do alot of the things I did before I had it yet! lol I thought after the first week I would be able to do everything again but have found out that it's still pretty painful. Where the implant is "burns" when I sit or move the wrong way, right where my tailbone ends "aches" constantly, and my left hip and leg are "achey" all the time now.
    I go for my follow-up with Dr. Goldman on Tues. March 20th so I plan on asking him about all this. Has anyone else experienced these things?
    Good news though I'm not going as often as I use to but am still going more then a "normal" person would.
    I've started keeping a voiding diary (which I should have done a long time ago) to see how it changes from day to day. Some days are better then others. I've also had nights where I don't get up at all to go (which never happened before) and then nights where I get up anywhere from 1 to 4 times. So far I'm really pleased with the results. I found out the first week that it doesn't keep me from flaring or from having pain. I tried to hold it longer then I should have and found out real quick that I still can't do that. lol
    Shawna
    Diagnosed in 2002
    Mommy of Cyndi & Dereka
    Tags: None
  • #2
    I found out the first week that it doesn't keep me from flaring or from having pain.
    your doctor and the med rep should have made this clear to you in the first place..

    as for the burning and pain there it is normal, it may burn or itch for a long time, its healing in there. Try to turn your stim down to get rid of the achy feeling. You do not have to feel it for it to work.
    I am glad you are having great success.
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      Thank you

      Dr. Goldman kept asking me after the trial stage if the pain had lessened. I thought it strange that he asked considering I had read many post on here that said it didn't help with the pain. I thought maybe he knew something I didn't.
      I have found that alot of people thought that the interstim was going to "cure" my IC. They are shocked when I tell them "No, I still have IC and the interstim only keeps me from going to the restroom as often" so of course I get "Well why did you have it done if it doesn't cure it?" and I answer with "Because I'm tired of living in the bathroom!"
      I did try turning it down like you suggested and the pain below my tailbone has let up some.
      I want to thank you for replying and letting me know I'm not alone and am not completely crazy! lol
      Shawna
      Diagnosed in 2002
      Mommy of Cyndi & Dereka

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      • #4
        Glad you are having success

        I got my InterStim implanted on February 16th, so I've had it just over a month -- even now I have episodes of aching and pain in the area if I'm too active, but this is normal. What the body does is make a "sack" for the implant. It creates an enclosure of fibrous, scar-like tissue all around the implant, and this is normal and happens when anything is implanted. In fact, your doctor counts on it happening because that's what makes the generator and leads stay in place

        Anyway, as that is happening (and it can take a month or two) you will feel twinges of pain, especially when you twist or bend a lot.

        And... I am planning on trying to wear jeans this week for the first time Takes a while for pressure on the area to be tolerable, so I've been wearing elastic waist and sweat pants, even to work ... LOL

        Finally, I still flare with the device. Most of the time it works great, but every now and then... I get a pain and frequency flare that the 'Stim doesn't take care of. Happened last Thursday and Friday, as a matter of fact!
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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        • #5
          lol nope your not crazy It took me sometime to heal, I will be getting a new stim here shortly, I am waiting on the doctors office to call me back with the date.
          'The will of God will never take you where the Grace of God will not protect you.'

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          • #6
            I am supposed to have a new stim put in in two surgeries april 19 and 26 .. my first one was put in in October and taken out in late November because it oppened up and would not stay closed because of infection. It ended up having to heal open. It has been fine, but just last week I noticed some pretty sharp pains in the scar area and also in my spine area - any ideas? They are planning on putting the new one on the other side and lower so maybe there will be more fat to helpit stay in better.
            " If I really cared as I thought I did, about the sorrows of the world, I should not have been so overwhelmed when my own sorrow came." ~ CS Lewis

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            • #7
              thank you

              How long does it take before you have to get a new one? Do they put it where the other one was? It's nice to know I'm not completely crazy. lol
              I went to my post op appointment and the nurse "tweeked" it and then told me that I would be fine. I didn't even see my dr. and was only there for 15 minutes after driving 2 1/2 hours to get there. I asked her about the pain and she said that it's normal. Which I knew because all of you wonderful ladies. She told me I wouldn't need another appointment!
              I tried to wear jeans and could only handle it for about an hour. I actually had to get some that were a bigger size then the rest because I've put on so much weight!
              alianne~ Did they say why it did that besides because of the infection? I hope the next one heals right. Keep me posted.
              Shawna
              Diagnosed in 2002
              Mommy of Cyndi & Dereka

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              • #8
                I found out tuesday I was getting a new one and will be getting it in may.
                'The will of God will never take you where the Grace of God will not protect you.'

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