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  • #16
    Erika,

    Thank you so much for the kind words. It helps so much to know that there's someone to talk to and understands what you're going through. I am trying to be positive. It's hard, but I'm working on it. My last void was 125 ml and 300 by the tube. I think that's good, because usually for me to void 125 on my own, I would have to have about 600 ml in my bladder. Maybe I'm analyzing too much. I don't know. Thanks again for the kind words.

    AnnieMac

    Comment


    • #17
      It sounds like from your first post your voids are increasing! When you have your heart set on something, over analying is very common. I did it too. Keep us posted! Your body is till getting adjusted ! HUGS!!!!

      Erika
      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control

      Comment


      • #18
        somewhere in here I posted the post-op instructions from medtronics. I was a llowed to shower in 24 hours, they (medtronic rep) even told me in the hospital, to disconnect the box, hang it around my neck get in wash up, wash my hair, but face the water.. As long as you were quick it was ok. then she showed and told me how to dry off the lead and plug it back in.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #19
          Hi everyone,
          Things are kind of stressful here. My husband went to the emergency room last night about 9:30 with tingling in his left arm and hand, a soreness under the left side of his rib cage, he was nauseous and out of breath when he tried to eat. They kept him overnight for tests and he's hooked up to a heart monitor. They want him to have a stress test. He's been my rock and now he's in the hospital and I want to be there for him, but with everything I have going on, it's hard. Talk about your stress. I'm trying to get my kids to step up to the plate and they have, but I just wish I could do more. My voiding is down and I think it's because of the stress. I'm going to try to lay down and relax for a little bit and drink some water. I've been worrying about everything else and haven't drank any water yet. Time for a water break and rest break. I'll keep you updated on everything. Thanks for listening.

          AnnieMac

          Comment


          • #20
            Oh my Goodness! I will say some prayers for you and your family. Try not to worry, he is in the best place he can be right now. Thank God you got him to the hospital quick! Keep us posted on his condition!

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #21
              Hi Erika,
              Hubby is back home and they tell us there is nothing wrong with his heart, but he has to go to his pcp next week to have a few other things looked at. I am happy to have him back home and my voids are back up again, well 125 ml with 300 remaining. I'm increasing my water too seeing that I was neglecting to drink enough worrying about him and trying to get things done so he wouldn't have to worry when he came home. What a fine bunch we are huh? Thanks for the prayers!! Keep them coming!
              Just got off the phone with my rep. We changed to the right side. Hopefully this will show some improvement. This is nerve-wracking.

              AnnieMac

              Comment


              • #22
                Hi everyone,

                I thought I would give everyone an update on my trial. The voids are slowly, and I mean slowly, increasing. I have had a couple of voids of 175 ml. Something else I noticed is at times when I am voiding, it's like I can feel like a squeezing sensation in the urethra, a couple of times the urine stream has been stronger. But a weird thing is the appearance of flakes in my urine, which I have had before, but these look blue!! and also the appearance of what looks like black specks of pepper??? Weird. I go and see my doctor tomorrow, so I will ask him about that then. I was also asking the Medtronic rep today about how it is decided whether I can have the permanent implant, whether I have improve a certain percentage or what? She told me (I have a different rep this week) that it is my decision, whether I feel I am making progress or not. Is that true? I thought the doctor decided whether you should have the permanent implant or not. I think I am making progress, it's just very slow progress. Just thought I could get some feedback from others on the board. Anxious to talk to my doctor tomorrow to get some answers from him. Also wondering what he will say about my voiding diaries. The rep also told me today that it sometimes takes a while to see results with retention and she asked me how long I have had retention (6 years) and she said to definitely give it more time. Looking forward to hearing your thoughts. Thanks everyone for your input.

                AnnieMac

                Comment


                • #23
                  I am so glad your husband is ok first of all!!!

                  I don't know about the black and blue specks, I would ask your uro. The implant decision is truly yours. Your uro will give you his medical opinion, but if it IS working, it is your decision. I would look at your quality of life with the implant. Is it making things easier? worse? the same? If it is improving your quality of life, I say go for it!!! My uro said if the trial doesn't work, the implant won't. He also said it does take time to "reprogram" those nerves. Basiclly, listen to your body. It sounds to me like it is starting to work, but I would think about if you are satisfied enough with the results to get the surgery. There is also a chance it will work better over time, as your nerves get used to it, but is that a chance you want to take? Hope this helps!

                  Erika
                  IC diagnosed officially via cysto/urodynamics 1/26/07

                  Grade II Endometriosis diagnosed via lap 12/11/07

                  "Fall down seven times, Stand up eight."

                  "Life is a tragedy for those who feel and a comedy for those who think."

                  Current Treatments:
                  Interstim Since 5/25/07!
                  Birth Control

                  Comment


                  • #24
                    I agree wholeheartedly with Erika about everything

                    Definitely ask about your urine flakes, and ask your doctor what his medical opinion is on your progress. Don't let anyone pressure you though... you know your own body best, and you know how you feel about this whole thing. It's okay to decide not to do the implant even if you've done the trial. If you feel the improvement you have seen is not worth the hassle of another surgery, then you don't have to go through with it. Follow your heart on this decision

                    As someone who was helped immediately (literally, as soon as the device was turned on in the recovery room), my decision to have the permanent implant was easy -- but it sure took me a LONG time to decide to even go for the trial! I did a lot of thinking, and then I got a paper saying my insurance would not cover the procedures... and I got super sad. That's when I knew I wanted to try the InterStim.

                    So, your heart will tell you somehow what to do... just listen to it.
                    Last edited by Sarojini; 06-26-2007, 04:53 AM. Reason: Dumb typing mistake
                    ****
                    Jen

                    *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.

                    Comment


                    • #25
                      Thank you Erika for responding. I am going to see my uro today. I am going to ask him about those flecks. When I had the trial surgery, I had asked him about my tube being sore, so he said when I came in for my postop, he would look inside my bladder and probably change the tube in the office. I think if I can hit 200 ml on my void, I will most definitely go for it, as I have never voided that much on my own. Also, I feel like something is happening with my pelvic floor muscles. When I void, it feels like the urethra is trying to open and at times, the urine stream does feel stronger, although not a lot. I'll give an update later today after my office visit. How is everything working out with you? I hope you are well.

                      AnnieMac

                      Comment


                      • #26
                        Thank you Jen. Did you have retention too?

                        Comment


                        • #27
                          No, I had urgency/frequency... but I know several people who've had good luck with the Stim for retention, so you never know I hope you feel better soon, whatever you choose to do!

                          When would your permanent implant be if you decided to complete it?
                          ****
                          Jen

                          *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.

                          Comment


                          • #28
                            Permanent implant would be July 2.

                            It's driving me crazy watching the voids every day and I analyze EVERYTHING! Like this morning, my first void was 100 ml with 300 ml by cath and just now it was 125 ml, with 300 ml by cath.

                            Comment


                            • #29
                              Don't let it consume you! You are right about the pelvic floor thing! The stim helps control the urinary sphincters in the pelvic floor. In your case, you want them to relax. Try to picture "the doors opening" when you pee. My uro told me this and it does help to imagine it. If your feeling them try to relax thats a good sign! Be patient it does take time.

                              Erika
                              IC diagnosed officially via cysto/urodynamics 1/26/07

                              Grade II Endometriosis diagnosed via lap 12/11/07

                              "Fall down seven times, Stand up eight."

                              "Life is a tragedy for those who feel and a comedy for those who think."

                              Current Treatments:
                              Interstim Since 5/25/07!
                              Birth Control

                              Comment


                              • #30
                                Hello again

                                Well I had my followup appointment with my doctor and he thinks that I am doing pretty good with my voiding but would like to see me hit the 200 cc mark (as I also thought). He looked over my diaries and noticed that I recorded much less pain as time went by (another thing I noticed). As far as the flakes are concerned, he said I may have a bladder stone from calcifications on my tube. He will look at my bladder while I am under anesthesia on Monday and also remove my tube and place a new one. He said he will call me this weekend to check on my decision. I'm on the fence right now, but I think if I could just see one void of 200 cc I would be happy and go for the permanent implant.

                                AnnieMac

                                Comment

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