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  • Interstim

    Well I finally had my surgery to get the test implant done on Monday and to my delight it has help with me going all the time. It feels like I've been kick in the rear by a horse right now but I'm not living in the bathroom! Woohoo! My pain is still there which I knew it wouldn't take that away. I have my next surgery on the 5th of March. It's so odd to me to not be in the bathroom all the time but it's great. Wow, I hope it keeps helping me.
    I do wonder if "holding" it so long will send me into a flare....has anyone had trouble with that?
    Diagnosed in 2002
    Mommy of Cyndi & Dereka

  • #2
    great to hear that you have relief from the RR
    sorry about the butt pain
    i have my trial one done this Friday.
    i have heard that some have pain relief ... i am really praying for that!
    keep healing!
    Faith is not believing God can; Faith is believing God will!


    • #3
      It's so odd to me to not be in the bathroom
      no kidding, isn't it great

      I can hold it a little longer then what I use to without a flaiir.. Say you are at the grocery store, and you live a mile away you can get home and dance to the toliet, and be ok.. he he he... but I certianly drive 2 miles lol..
      I am so glad that you are getting relief, and it contiues to give you relief.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        I just had my permanent implant done and I also find it great. It is weird not to have to go to the bathroom all the time! Like you, I still have pain, but it is nice to have a lot of the frequency/urgency relieved.

        So far holding urine longer hasn't caused me to flare. Trigger foods still do... I tried beer during my trial (during the Superbowl) and that normally makes me flare; of course, it still did. So, it's possible to flare with the device in place, but it seemed to me that the frequency part of the flare didn't last as long.

        *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.


        • #5
          Georgia~Big hugs to you and I will keep you in my prayers. Keep me posted on how you are doing.
          Sarojini~ It's always nice to hear about others having good results too. Big hugs to you.
          Tigger~I read your story and it gives me hope that it will keep working for me. It is great to beable to cut the ties with the bathroom so to speak!
          I thought that I would finally beable to drink orange juice (which I haven't drank in forever but love very much) boy was I wrong! Sent myself right into a huge flair on top of the kicked in the rear feeling! lol I even bought the low acid oj but to my dismay I still can't have it. So now I know my diet can't change from being an IC diet.
          But the good thing is I feel close to normal now (well with the exception of having a wire hanging out of my body & a box on my side) I never thought I would feel this way again. I've also noticed that I've got a little better look on life. Weird I know but true.
          I'm excited to get the second stage done so I can get on with my life and be able to attend my children's school fuctions without having to worry about going all the time. They are so excited to have me able to do that again. They have been wonderful and very protective since I've come home. lol B.J. (my SO) has been so great too. He won't let me do anything and has taken great care to make sure I'm comfortable and that my dressings stay clean and in place.
          Thank you ladies for your comments!
          Diagnosed in 2002
          Mommy of Cyndi & Dereka


          • #6
            Thanks! I will keep you all posted.
            Rest up and take care!
            Faith is not believing God can; Faith is believing God will!


            • #7
              I am glad the trial is going so well for you. I hope you will have continued success as well.
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...


              In Memory of My Father (Lawerence) 1/25/2007

              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996

              Me and my kids

              Taylor (my daughter) Me and my daughter My son Cody and Taylor


              • #8
                It's so good to read all of yall's good news with the trials and permanent implants. It brings up so many funny memories!

                When my kids were involved in our church youth group, my husband and I would always go and everyone knew to make sure I was on one of the buses not the vans since I needed the potty. As bad as I hated using those bus potties, I couldn't ask the caravan of 4 vans and 2 buses to stop every 15 to 30 minutes. It became a joke with the kids on my bus that Ms. Tracey was actually a spy since I would walk back there to use that nasty bathroom. When I had my surgery in 2002, I was put on the highschool age bus that next summer. There were so many kids trying to get switched since of course that is we say "hand check" bus. Yes..even on a church youth trip! Of course, there were no switching per our youth minister. It occurred to me that my older son was on that bus and I told him to not tell anyone that I was not on that gotta pee now deal anymore. It was so funny listening to them saying when is she going to come back here? So just to get them going, every once in a while, I would go back and just sit with one of the kids. Especially by the ones with the newly forming camp romances.


                • #9
                  I am now considering interstim...frequency and pressure are my "baddest" monsters! Does it reduce bathroom trips in half and since I will have Dr. Evans do it, does he follow up in do you stay overnight in Hospital and go away with pain meds? I am seriious; I am definitely thinking this might be the answer for me, and he HAS mentioned it several times about other patients of his having it with great success. The bathroom visiting is way old.
                  Love ya'll


                  • #10
                    I reduced my bathroom trips, but like everyone is going to tell you, please research it and ask you doctor to introduce you to a couple of his patients that have had the procedure. I don't know of anyone that spends the night after either the trial or the permanent. Actually I was home by early afternoon after each surgery. I was definitely sent home with pain, sleep and nausea meds.

                    I know what you mean about the bathroom trips. My dog that I used to have would always look for me in the bathroom than in the bed. He knew me so well! LOL!

                    I hope that the interstim works for you if you decide to have the surgery.


                    • #11
                      Dr. Evans does follow up 'nicely', though. Didn't have an overnight stay for either the trial or permanent placement. I've had several adjustments over the past two years. No problem.


                      • #12
                        I am SO glad that your trial is going so well!!! It's exciting, isn't it? I have found with my trial that while my usual pain is still there, I do have less of the spasms that I had before after pushing so hard to that pain is definitely better. Good luck with your permanent!

                        I am in the middle of the trial with Dr. overnight hospital stays, but you shouldn't have to worry about pain meds, he will take care of that. I have my follow-up on Monday and then hopefully my permanent surgery next Friday. He also lets you choose the sedation for your permanent, you can have the twilight like in the trial or you can have general. I believe most people have the twilight, I am still undecided but will likely go that route.


                        "A heart is not judged by how much you love; but by how much you are loved by others."
                        ~ The Wizard of Oz

                        "If I ever go looking for my heart's desire again, I won't look any further than my own
                        back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                        • #13
                          I didn't stay overnight with my trial and Dr. Goldman told me that both were out patient procedures. He had me somewhat with it at the beginning and then he put me completely out for the rest of it. I believe he will put me completely under for the second stage.
                          I was sent home with darvaset and had to call Dr. Goldman the next day because they weren't enough to even take the edge off the pain so he called me in vicoden.
                          I have to admit I have thrown myself into a flare....Ughhhh. The pain is still there and I do go more now that I'm in the flare but it was wonderful to know that when I wasn't flaring that I wasn't in the bathroom all the time. In fact now I'm in a flare I still don't go as much as I did before in a flare.
                          Good luck to all of you that are getting it and hopefully it will help you as much as it has me and others. I can't wait to get the permanent on so I can be somewhat normal!
                          Diagnosed in 2002
                          Mommy of Cyndi & Dereka


                          • #14
                            Thank you for shaing!

                            I appreciate you and others who have written to put my mind at ease IF* I have to go to that treatment. i have to admit; it sounds great not to have that constant need to urinate. Anyway, I feel I have found some good people here and it means so much to me. Crazy that we can't meet; I hope one day to make it to an IC conference and then get a chance to hug some of the bravest folks I have ever "met" through this forum.
                            Thank you all-
                            Love and Peace* and good health, to you all and this Nation of ours-