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Nerve damage from Interstim???

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  • Nerve damage from Interstim???

    I havent been on here for a while but was wondering what kind of problems others have experienced from the interstim device. I had mine removed about 2 yrs ago due to the leads "shocking" me even when the unit was on lowest setting (I had device for IC and had the unit itself repositioned 1x and the leads repostioned 2x). Within a few months of having the unit removed I had tremendous pain in both of my legs and my lower back. I had nerve conduction studies on my legs and everything was normal. However, my legs hurt so bad sometimes they keep me awake pain meds dont help. I get the tingeling and numbness all the way to my feet. I have severe pressure in the sacral area where the leads were as long as shooting pain in the area where the box was. Currently I am having bowel problems and my dr. is wondering if it is a nerve problem. He said we the bowel and bladder are same nervouse system and we have worked so hard at suppressing the bladder he thinks maybe we have also suppressed the bowel. I am wondering if this is all related to problems with the iterstim. About 2 months after having the device removed I was dx with fibromyalgia. I also get the numbness and tingling in arms and hands. Any feedback would be appriciated. Thanks!
    Right kidney removal 1992
    Diagnosed with IC 2002
    Nuerostim placement 2002
    Nuerostim adjusment (surgical) 2007
    Diagnosed with nueropathy 2007
    Diagnosed with essential tremors 2007
    Endometrial abblation 2007
    Interstim removal 2008
    Hysterectomy with bladder tuck 2008
    Vasculitis Unknown orgin 2008
    Fibromyalgia 2008



    Currently taking the sodium bicarb/lidocaine/hep bladder installs on a daily basis.
    Will start PT for pelvic floor dysfunction once healed from hysterectomy surg. on 2/21/08.
    I take 2400 mg of Nuerontin (800 3x per day)
    Valium 10mg 2x daily (morning and night)
    10 mg of oxycodone as needed for breakthru pain
    15 mg oxycontin 2x daily (morning and night)
    Cymbalta 20 mg 2x daily (morning and night)
    Lidoderm patches as needed
    Lidocaine gel as needed
    Pyridium as needed.

    I self cath 3x daily due to some retention from pain meds. Of course this is just a recommendation, If I am not having trouble or it is no convienent, I dont do it.

    Was told by my Rhumetologist that she is not sure what we are going to do to treat the Vasculitis and Fibro as they are both considered infamitory problems and I am alerigic to all anit-inflamitory meds.





    Me and my kids
    Susan age 16, Me, Whitney age 18



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