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  • Intrerstim Trial Thursday

    Grtting nervous. Interstim trial set. I have been having urgency/frequency as well as retention. At my last instill after voiding twice I still had retained 500cc. I was so uncomfortable I thought i was going to explode. Anything over 100cc gives me horrible pain. Anything in my bladder is irritating. I have tried everything. Elmiron instills help frequency but not retention and only for about 24 hrs. I know the interstim will not help my pain directly but if it can reduce my retention and frequency it will be worth it. Trial will last 3 to 5 days. I hope it either helps a lot or not at all so ill have a clear picture of if i want to procede to the implant. I have had 9 abd surgeries. The last was surgery to remove my bladder from my abdominal wall with a tsh as well. I have been a wind up as my doctor puts it since april 17 th. I have been on disability from work since then. I have tried fentanyl patches which put me in the ER. I have tried ketamine cream, doesnt get deep enough, heparin instills, TENS unit, PT, elavil(became tachycardic). Neurontin ( did nthing) and all the pyridium, prosed variations, as well as oab meds and flomax for retention over the years. I am currently using Savella, ketamine cream, biweekly instills of elmiron, and taking lortab 3 x a day. Any experiences you all could share about the trial would be great. It is being done in my uro/ gyn's office. They told me i could drive myself there and home but am not going to as i dont drive when taking narcotics. They said they would just use a local anesthetic. I have been researching for months and woyld love to hear your experiences. Ny questions i should ask my doc also would be appreciated? Thanks.

    Watata

  • #2
    Anyone?

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    • #3
      Very disappointed in the lack of support on this site. I would think someone would have been through interstim trial to give insight. I plan on using my experience to help others gain knowledge. So far everything is going well. I have gone to voiding 100 to 400 cc and can even go two to four hours sometimes. Only had to get up once last night to go. Pain isnt relieved but wasnt expecting it to be. Doctor called me back herself to answer my question about pain at the lead site. I hope others who have or will be going through a trial will speak up so others have knowledge and research to go through this trial and not alone. I made it I suppose, but hope that i will give some of you a positive note to the trial. Although I like to hear all sides of the situation such as what could go wrong as well. Its a big step, and we all need each other for support as most of us rely on our ic sisters to more fully understand our bladders and relate, as our families sometimes struggle to relate to such a debilitating disease.

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      • #4
        Interstim therapy

        Originally posted by watata View Post
        Grtting nervous. Interstim trial set. I have been having urgency/frequency as well as retention. At my last instill after voiding twice I still had retained 500cc. I was so uncomfortable I thought i was going to explode. Anything over 100cc gives me horrible pain. Anything in my bladder is irritating. I have tried everything. Elmiron instills help frequency but not retention and only for about 24 hrs. I know the interstim will not help my pain directly but if it can reduce my retention and frequency it will be worth it. Trial will last 3 to 5 days. I hope it either helps a lot or not at all so ill have a clear picture of if i want to procede to the implant. I have had 9 abd surgeries. The last was surgery to remove my bladder from my abdominal wall with a tsh as well. I have been a wind up as my doctor puts it since april 17 th. I have been on disability from work since then. I have tried fentanyl patches which put me in the ER. I have tried ketamine cream, doesnt get deep enough, heparin instills, TENS unit, PT, elavil(became tachycardic). Neurontin ( did nthing) and all the pyridium, prosed variations, as well as oab meds and flomax for retention over the years. I am currently using Savella, ketamine cream, biweekly instills of elmiron, and taking lortab 3 x a day. Any experiences you all could share about the trial would be great. It is being done in my uro/ gyn's office. They told me i could drive myself there and home but am not going to as i dont drive when taking narcotics. They said they would just use a local anesthetic. I have been researching for months and woyld love to hear your experiences. Ny questions i should ask my doc also would be appreciated? Thanks.

        Watata
        Watata...I had my interstim trial 4 weeks ago and am now counting down the days until I can have the permanent implant....which will be June 21!...hospital is very busy. I had 2 wires inserted, one on the left and one on the right side. The left side was painful; but the right side showed marked improvement in reducing the retention and frequency. The idea here is to reduce he residual in the hopes of reducing my bladder infections.

        I have been through all the treatments and procedures that you mention above over the past 25 years with little or no comfort.

        I have a continuous bladder infection due to retention, so this is the reason we are doing the implant. I am hoping your trial goes well...keep in touch
        Carolyn

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        • #5
          Trial went well. Left wire bothered me as well. Right did make a huge improvement from 25 times a day to 8 to 10. Waiting for permanent placement June29. Doing twice weekly elmiron instills and internal injections. Have tried everything as well. Thanks for sharing.

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          • #6
            I went through the trial and permanent implant in March of 2006. It all worked so great for me. It totally allowed me to leave me house again since I wasn't going pee every 15 minutes! I am even one of the lucky few that it does help with certain types of my pain. I realized just how much about 8 weeks ago when my implant went dead. I had it for 5 years and it served me well. I am now 4 days post op from having a new one implanted. They have changed so much! I love the newer smaller ones!

            So far so good but the sensations are different and I am still having some urgency and quite a bit of pain. I'm confident I'll get it back to the success my old one was. Just takes time.

            Good luck!!
            Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
            _____________________________

            DX: IC - November 2002 after hysterectomy
            Interstim implanted March 2006 - died May 2011
            Interstim replacement June 2011
            Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
            Docs: Pain management doc, urologist, family practice

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