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  • Pain at impant site?

    When refering to the adverse effects they say possible pain at the impant sites. Do they mean pain because of the surgery and wounds? Or do they mean that after your completely healed from the surgery the implant can cause ongoing pain? Also, if the trial is done with the fully implanted lead but is still unsuccessful do they remove the lead? (I'm feeling very in the dark here because my doc accidentaly handed me the spanish version of the informative dvd...I'm going to call on monday to see if I can get the english version but until then I'm still anxious/curious)
    I'm also very concerned about being able to feel it through my skin, and it making sitting uncomfortable. I'm very skinny, and I have no fat to hide it in... so not only am I nervous about the impact on my comfy sitting I'm also worried about appearance. In addition, I'm 20 and am very curious about long term impact. Are those big enough reasons not to give it a try? While I'm desperate for a change I don't want to jump to any decisions.... so any imput (or your personal experience with these issues) would be helpful.
    "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
    -Robert Strauss

    Info:
    20 year old toilet slave
    Professional Bed Wetter
    Zillions of "UTIs" since I was 3 yrs old
    FINALLY diagnosed with I.C. 4/04
    Diagnosed with Grade IV Kidney Reflux 1/07

    Current Sitch:
    My InterStim trial has started... and so far IT'S WORKING!!

    Meds:
    For physical:
    Lidocaine instillations 3x per day
    Lidocaine urethral suppositories prior to cathing
    Elmiron
    Vicodin
    OxyContin
    Aleve
    Urelle
    Prelief
    Macrobid
    Atarax
    Estrace
    Uroxatral

    For Emotional:
    Lamictal

  • #2
    I had my uro appt this week, and she wanted me to consider the implant. I asked alot of questions, how many have you done, what is the success rate from your patients, will insurance cover it, etc. I am also skinny, about 105 and have no butt at all, it hurts to sit in the bathtub because I have no fat there. She assured me that it is so tiny now, that I wouldn't feel it, but I am still not wanting to go that route yet. I got a tens unit this week, and so far the hydro's every six months keep my frequency down. She is also ok prescribing pain relieve every month, low dose, so right now I am just going on like I have been. But in two years my insurance will run out (ex husband's cobra policy), so if I want to do the implant I have to do it before, because no insurance that I get after would pay, because it would be a preexisting condition.

    Comment


    • #3
      Pain at the implant site CAN occur after the implantation process has finished and you've healed up, but it is not the norm. For me, it hurt for a few weeks after the surgery, but now it is fine.

      The staged trial (with the lead fully implanted) is usually done; if it is unsuccessful they DO remove the lead. Removal of the lead at that point is easy; my urologist said it is an in-office procedure.

      As for implantation itself, they do not put it directly in your butt cheek; it is further up, where your butt curves in to form your waist. Therefore, you never actually sit on it. It might be tender to lean back in a chair for the first few weeks, but that too disappears.

      You cannot see the implant through the skin. Even if you are small, they have methods of adjusting surgical technique to tuck it under -- these days it is about as big as a casino chip in Vegas. It is only about 5 millimeters thick. As for feeling it under your skin, if I press on the area where my InterStim is, I can feel a slight difference -- it feels a little harder than the other side, but it's not really obvious. My husband has touched it and he says he cannot feel anything at all, so it might just be my imagination

      Still, you need to research this a lot more. Definitely get the English version of the DVD, and read the literature that should come with it. If it doesn't, go to the Medtronic website and order the info... and also read everything you can on that site.

      Read stories here too -- both good and bad. I had a great experience, and my story is in the "Neurostimulation -- Undergoing Trials or Surgery" section of these boards. They're all titled "Interstim Diary" and I chronicled my entire implantation process from a few days before the trial to a week after the permanent implant.

      Others have posted their stories too, and unfortunately, they were not all as successful as I have been, but read them carefully so you know the risks.

      Talk with family and friends as well. Sometimes just talking can help you sort out your feelings.

      This is not a split second decision. It took me months to decide to do this.
      ****
      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.

      Comment


      • #4
        I've come up with a list of questions I'm going to ask my doc. I've looked at the meditronic website... and done a little reading about it on the message boards here. After the urodynamics testing yesterday (Man am I still ouchie from that!) we learned that my incontinence and retention is due to severe bladder spasms. I believe that my IC pain exacerbates the spasms which in turn fuel the pain (I've known this was happening for an entire year, but it's finally been proved). So to break the cycles I have to stop the spasms. Anti-spasmodics don't work because I severely retain, muslce relaxers make me continously incontinent. So my doc offered Botox or InterStim. I guess I'm leaning more towards InterStim because the worst case scenario with Botox (to me) is scarier than atleast TRYING out the implant.
        My family is being, surprisingly, supportive. My mother came with me to my appointment yesterday, and for once didn't dictate which course of treatment I should take. They're also a little relieved because they thought I was completely out of options, and they're hopeful that whatever I choose will help me.
        I'm hopeful too, but nervous because of the shear gravity of a decision like this too.
        "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
        -Robert Strauss

        Info:
        20 year old toilet slave
        Professional Bed Wetter
        Zillions of "UTIs" since I was 3 yrs old
        FINALLY diagnosed with I.C. 4/04
        Diagnosed with Grade IV Kidney Reflux 1/07

        Current Sitch:
        My InterStim trial has started... and so far IT'S WORKING!!

        Meds:
        For physical:
        Lidocaine instillations 3x per day
        Lidocaine urethral suppositories prior to cathing
        Elmiron
        Vicodin
        OxyContin
        Aleve
        Urelle
        Prelief
        Macrobid
        Atarax
        Estrace
        Uroxatral

        For Emotional:
        Lamictal

        Comment

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