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  • considering interstim-need advice

    i went to a urologist that is supposed to be the best around here, about 2 hous away, last week. he suggest trying the interstim on the outside for 5-7 days, then implant if it works. i am really nervous about this, so i have not made another appt. i have fibro, and also degenerative disk disease, and bulging disk on four of the bottom disk. so i am very afraid of having anything attached to my spine in case it makes it worse. has anyone heard of it agravating back problems? i would appreciate any input on this. thanks for being here. jooh

  • #2
    I'd like to welcome you to the IC Network.

    I don't have any experience with the interstim, but do have some thoughts. First, it sounds like you are feeling some doubts. I usually suggest to anyone with these feelings that they get a second opinion. And with your back problems, it wouldn't hurt to talk with a neurologist --- perhaps the doctor who diagnosed your spinal problems.

    You didn't mention how long you have had IC and what treatments you have tried. I'm just assuming you've tried most everything else since that's usually when interstim is considered.

    Sending healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, 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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      thanks for replying so fast donna.i've never used one of these message boards. its nice to have someone else to talk to who understands. i was diagnosed with ic in 1995,but i think i had it about 5 yrs. before that. they kept treating me with anti-biotics. i have had 6 hydro-dilatations, tried elmiron twice, tried the special diet-still do,tried instillations with two different drs. and two different solutions, the second round,they could only do two, then they said they couldn't get the catheter in, so they wanted to do a cysto-scope in the office, and i couldn't imagine having it done awake, when they couldn't even get the catheter in. so that's when i mad the appt. with the dr. that was recommended by a lot of people in a group i went to.he seems very good, also says i have pelvic floor disorder, and a rectocele that needs surgery, but he wants to do the interstim before the surgery for the rectocele. he would like to send me for physical therapy for the pelvic floor but he says the only one he knows that does that is in st.pete, which is too far away, especially since i have to have my children drive me because i fall asleep driving. i also have fibro,chronic fat., and am on very strong continuous acting pain meds. i go to a pain clinic here. i am only 49, but feel like i am 80. i sleep about 2-3 hrs a night and thats with sleeping pills. and then i nod off all the time. my pain mang. dr. is supposed to be setting up for me to go to an anesthesiologist for the blocks for my back, but the urologist says maybe the bladder is making the back worse. who knows? anyway, don't mean to be a whiner, just confused on what to do, and i have been to every urologist that is any good in my town. how could i get referrals for good dr. and physical therapist in the surrounding towns? thanks so much for being here. my real name is linda.

      Comment


      • #4
        Linda~I have the interstim. And, I had the same kind of trial that your uro is recommending and I think it's a wise choice. It's a little scary and there is discomfort involved but it's not nearly as invasive as the 'staged trial' that too many dr's are starting with now. My implant stopped working after 1 1/2 years and I am waiting for a surgery date for the 'staged trial'. If that doesn't work, I will have to have the device removed and that will break my heart because during that 1 1/2 years, other than pain, I could live a pretty normal life. I don't have any back problems but the wires for the implant are so far down that it probably wouldn't matter....maybe your uro could talk to your back dr before you make your decision.

        I had a rectocele too. I had surgery to correct it in March and I was a nervous wreck....geez it was the best thing I could have ever done for myself. I honestly didn't know how bad it was until after I got it fixed. And, the recovery for me was really quick.

        Best Wishes to YOU what every you decide
        teri
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

        Comment


        • #5
          I also had a rectocele --- and surgery to correct it. The rectocele could be what is making it difficult to urinate and to get a catheter in. Have you seen a gyn to ask about the rectocele.

          Warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, 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.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            geez, thank you guys so much for answering my post so quick, i have been sitting on this decision for a couple of weeks by myself and it sure helps to have input from people who have been there. i made an appt. with my gyn to see about the recotcele. i would really like to get that done first.i don't know why the uro wants to do the trial for the interstim first. but i really think having to drive 2 hrs. to get it done, then for all the checks would be impossible, especially since i wrecked my car yesterday. i have done nothing but cry since. it shoved everything back into the radiator, and it is a very strange old car, hard to get parts for, which doesn't really matter since i have no money to fix it anyway. i guess i will call and check on bus schedules today, the only problem is that i may have to walk a ways to the bus, and i can't walk very far because of my back and the fibro, and ic. my kids said they will take me to dr. appt. but 2 hrs is two far, they all have their own children and families to take care of. sometimes i just pray for release from this life, it has gotten to be to hard. god says he won't give more than you can handle but i think he made a mistake in judgement with me. well, thanks to all of you, linda

            Comment


            • #7
              Hi
              I have had the trials and the surgeries and would be willing to talk to you more about it if you get to the point where you are going to do it.

              I hope things go better for you and that you can decide what to do.

              Dede

              Comment


              • #8
                The Insterstim has saved my life.
                I have SEVERE IC! On a bad day before the Interstim I went every 10 minutes. The urges were painful. Now I can go between 2 and 6.5 hours. I've had the Insterstim now for 7 months! It's the best thing I have tried and I tried it all!

                The Instersim trial is not bad. You can't do much but it's nothing like the real thing.
                I got a little relief from the test trial but I am young and not scared, so I decided a little relief was better than nothing at all; I went for the real Insterstim surgery and my life has been better ever since. The urgency and frequency have been taken care of.

                It's not designed to help pain but for me the Insterstim did help with the pain I felt with the urgency and frequency. I still have pain all around though.

                I am 100% for the Insterstim.


                If you have any further questions, feel free to ask away.

                Kara

                Comment


                • #9
                  What is a retocele?

                  Comment


                  • #10
                    Kara, a rectocele is when the tissue separating the rectum and the vagina is torn, allowing the rectum to protrude into the vagina. Depending on the severity, it can cause pressure against the urethra as the fecal matter builds before a bowel movement. They are sometimes not diagnosed immediately because when you lay down on your back the "bulge" disappears back to where it belongs.

                    The cause is usually straining for bowel movements, which puts extra pressure there.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, 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.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      If you even think you might have one, MAKE your dr listen!!!!!! My gastro AND my uro missed mine. I went to my gyno as a last resort and he immediately found mine.....it was so bad that I couldn't have a bowel movement with out (not to be gross) a helping hand......having it was MUCH worse than having the surgery to correct it. The surgery was a breeze.
                      teri
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

                      Comment


                      • #12
                        thank you guys so much for all the replys. i got a message on my answering machine from scheduling for the surgery yesterday so i will call back today and ask some questions. i think i will get the hyst. and rectocele fixed but not let him do anything to the bladder. then after i recover i will go for the interstim trial. the rectocele can also be caused by so many pregancies. i have 5 children and lost two at late stages. so i have had 7 preg. my mother also had the same problems and she had 6 kids. i just really hope and pray that the hyst. and rect. surgery does not make the ic worse. but i think that the pressure from it all is bound to make the bladder worse. lately i have been sleeping on the toilet for up to 3 hrs. at a time. i go every 10 min during the day, and some nights as much as every half hour at night. so tired, plus the stress from these decisions i am sure is making it worse. well, i will let you all know when i am going in and how it goes. thank you all so much. i am so glad i found this site. i don't know what i would have done if not. such a caring group of women. thanks again, linda

                        Comment


                        • #13
                          I wish you all the best in this surgery Linda!!
                          Hoping this will help you to feel better..

                          My thought and prayers be with you Linda..
                          Keep us posted on how you are doing ok!!

                          Hugs: Debbie
                          Thinking positive has got me through to another day!!

                          Comment

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