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  • Temporary interstim

    I am in the midst of a really bad flare and my bladder has now shut down almost completely. I feel the urge to go but I have little to no success at emptying my bladder. I have finally got the hang of doing my own self caths so that I can get some relief. I am also going to the dr. daily for heparin/marcain instillations. My dr. said that if I don't come out of this flare soon that we can talk about putting in a temperary interstim to jump start my bladder again. I am not a candidate for long term interstim therapy because I have almost symptom free months in between very sever flares.

    Has anyone heard of doing this? My biggest problem during flares is pain and now retention. My dr. says that the interstim can reduce pain for most of his patients. From what I understand it is like the trial interstim that he is propossing that we consider if things don't get better soon. I would love to know what those of you that have gone through this think.

    Thanks a lot,
    Rachel

  • #2
    Hi Rachel,

    Hmm I have never heard of that but I wish you luck! I love my permanent!

    Hugs and love,
    Jess
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

    Comment


    • #3
      Hi Rahcel never heard of that either but wish you luck but the insterim is not for pain.
      Hang in there , There is hope.
      There is hope. Prayer works.

      Love, Debbie

      Comment


      • #4
        Medtronic states that interstim is NOT for pain. I hope you get better soon.
        carly

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        • #5
          Rachell,
          I have never heard of a temp interstim, and I have researched it very well.
          please please know that the interstim is not for pain I wish I could choke the life out of these moron doctors who tell patients this.. cussing banghead This makes me furious.... cussing banghead
          I hope you feel better soon.. please got to www.interstim.com
          brat
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Thanks everyone for the replys. I know that the FDA has not approved interstim for pain and that pain control is not a reason to consider it. My urogyno said that we may need to consider doing what is typically called a trial in order to jump start my bladder so that I quit retaining. In addition, he said that while they cannot advertise it for pain control many of his patients have found that as an added benefit. I let him know that from everything I have read from patients who have undergone the implant pain control has not been a result.

            I do not feel that I am in any way a candidate for permanent implant but if something doesn't happen soon I will consider the trial. I am now having to self cath several times a day because I either am completely unable to go or I only empty about 50cc on my own. At this point I am becoming desperate.

            Brat in your trial did you notice improvement right away? Did you have to stay overnight in the hospital for the trial? From what I understand you have to be semi-concious to put the leads in. How did that go for those of you that have had this done? I have gone to the interstim website and feel that I am fairly well informed but I'm wanting feedback about individual experiences with the trial. What to expect, problems you've encountered, etc. Did the interstim trial cause more pain for any of you?

            Comment


            • #7
              Rachel,
              I can't answer any of the technical stuff you asked about but I was going to ask if you have thought about seeking another uro's opinion on this? It is a thought if you have several in your area. Maybe somebody new would have another idea. I know there have been times I have been to several Dr.s just seeing different views on stuff before I decided what to do.

              I wish you good luck and hope you can find something to help you.

              Jolene
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


              • #8
                Hi there,

                Here's how the trial went for me:

                I went in, laid on the table. They positioned me to where they wanted me. I was given a med into my I.V. to make me loopy, but coherent. The doctor will numb the area where he will be trying to find the nerve, and you'll feel a poke. The interstim rep will have something that will turn the stimulation up or down, and you tell the doctor where you feel the stimulation. When they find the correct nerves, they will knock you out and put the leads in. You will wake up in recovery and the Interstim rep will be asking you about the stimulation as he programs your box. You will have wires coming out of your back and they will hook into the box, which you can put on your belt loop.

                Well for me, it was painless, and I was laughing with the doc and trying to make the best out of an embarrassing situation! (having my naked rump exposed to half the world!!!)

                Good luck, I hope it works for you!!

                Hugs and love,
                Jess
                Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                Comment


                • #9
                  By the way I used to retain horribly and the Interstim has changed all that. Go with what your uro says, he's qualified and has a degree.
                  Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                  Comment


                  • #10
                    I noticed improvement with in 2 hours after I turned on my device
                    I did not saty over night in the hospital a good dr that knows what he is doing can do an outpatint surgery.

                    I was in twlight as they say... but I was more out then awake I did not feel any pain.
                    my trial and implan was great was home with in a few hours
                    I am glad you went to the interstim site you alos can pm me or email me [email protected]

                    It did not cause me anymore pain but it is not for pain and I would do it again

                    Brat
                    'The will of God will never take you where the Grace of God will not protect you.'

                    Comment


                    • #11
                      Jolene,
                      I definitely research anything before I try it and I believe in getting second oppinions too but I trust my dr. very much. He was the second urologist that I saw before getting a diagnosis and is extremely compassionate and very thourough. Last year he ordered an MRI to rule out a slim possibility for M.S. and did a battery of blood tests to rule out everything possible. I don't trust very many dr.s any more but I do trust him and he was the first one to help me begin to feel better.

                      Believe me we are trying EVERYTHING before surgery. Not only that, but he doesn't think I should do permanent interstim because I do have many good months on my meds alone. I think he mentioned the temp interstim last week because he knows how desperate I am to get some relief and he offers me hope. Sometimes just knowing there's one more thing we can try, is helpful in and of itself even if I never have to try it. banghead I now am in constant retention and if a temp. interstim can get me working it may be worth the try. Beleive me I am trying other treatments first. I'm on several meds and going daily for heparin/marcaine instilations. My urethra is so irritated now from constant caths that I'm bleeding and having worse spasms than before. I'm just looking for relief. I'm sure I would get other oppinions if I went to other dr.s but I really trust this one. He is highly qualified in women's urology as he is a urogynocologist and only one of a few in my area. Thank you for your suggestion I'm sure I would and have said the same thing to others considering procedures.

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                      • #12
                        Jess and Brat, thanks for sharing your experience. That's pretty much what my dr. told me they would do. Did the wires move around on you after you returned to normal activities? Did the dr. have to adjust the wires during the time they were in? How long did you do the trial one?

                        Comment


                        • #13
                          Rachel,
                          By all means if you have a good Dr., stay with him and trust his judgement. It sounds like you are doing it right. I hope something will help you soon. I know how uncomfortable I get when I can't go. I don't have retention often but when I do it hurts sooooo bad. Hang in there. I will pray things go well for you. kissing

                          Jolene
                          Jolene

                          "Life is what happens when you are making other plans" John Lennon

                          IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                          Information for Patients can be found here.
                          http://www.ic-network.com/patientlinks.html


                          Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                          Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                          "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


                          • #14
                            I have the temporary inner-stem scheduled for March 1 and the permanent one 7 days later. My doc. has made is clear that it is not approved for pain but that it has helped his patients tremendously with the pain. The way he explained it is if you can get your spasms and urgencey under control it will help with the pain. He also has made it very clear to me that I will never be completeley pain free and will still have to use pain meds. some as needed. Like you I have read as much as I can find and I have also went to a conference with an inner-stem representitive. I have to confess though that since Feb. is here and seeing how Jan. flew by I am getting very nervous and scared. I can change my mind as late as the day of the surgery. My doc. said that if he had IC he wouldn't have to think twice about it to have a better quality of life with less meds. I do believe that is you have a doctor who you are comfortable with and completeley trust I would follow his advice, especailly since it is so hard to find a good doc. who is educated in IC. Ask your doc. if he can give you some names of other patients who have undergone the trail period. Have him to call them and ask them if you can call them and if they don't mind they will tell your doc. it is o.k. for him to give you their phone number. That is what my doc. did for me, although I haven't called them yet---I am going to though sometime this week. Hope you find your answer only you can decide what is right for you along with the help of your Doc.

                            Tami hi
                            [email protected]

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                            • #15
                              Thanks Jolene for your prayers and support. Tami I wish you the best in your trial as well. Let us know how it goes for you. The good thing about the trial is that if there are complications or the unit doesn't work for you it can easily be removed. It's great to be able to try it out before the permanent implant. I will be praying that all goes well for you and that you feel comfortable with whatever decision you feel is best. grouphug

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