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Interstim Journal II - First Stage Surgery completed

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  • Interstim Journal II - First Stage Surgery completed

    Hello all! I have just returned home from my first stage interstim surgery. I got there around 10:30 this morning, and they were running behind, but of course that was apparently a closely guarded secret. So, they took me back, I changed clothes and sat in the little recliner with the warm blankets. And I sat, and I sat, and I sat some more! Finally, the anesthesiologist came in and talked to me and left. Then, a while later, the nurse came in and went over everything and then got my IV started. My family was then FINALLY able to come back and sit with me, and I was able to go pee. I held it all that time because I kept thinking, "Someone will be here soon."

    Anyway, a few minutes later Dr. Evans came by and said he was almost ready and we would be rolling soon! After that, the nurse anesthetist came in and got me (after I peed one more time!). We walked back to the OR and I laid face up on a table, and right beside it was the "face down" table (I could tell by the pillows and how it was set up). They piled on the warm blankets and right away they gave me something for pain ( I wasn't able to take my pain meds this morning). They hooked me up to the blood pressure cuff and the pulse meter thing and the oxygen mask. One nurse said she was going to cath me, and she looked really apologetic, but I said, "Don't worry, I have to do it every day." Then the nurse put the "good stuff" into my IV. I didn't really feel anything. I was just looking around the ceiling waiting for a groggy feeling to kick in and waiting for my cath.

    Well, next thing I knew, I was in the recovery room! I remember waking up and for some reason, the first thing I did was feel "down there" to see if I was still cathed, which I was. I wasn't groggy for very long, maybe 5-10 minutes. The nurse came to check on me and Paul, the Medtronics rep came in. He hooked up two wire leads (one at a time) to me and did different things with the generator and asked where and how much I felt it. He left, and I heard him outside the room explaining the generator to my husband, then he came in to explain it to me. I wear it for five days on one lead, then five days on the other, and that will carry me through to my post-op appointment. He also wrote his name and cell number on the generator itself in case I need him.

    Just a couple minutes later, the nurse took out my cath and walked me to the second recovery area, back to a little recliner. Waiting for me was some cold gingerale and a packet of graham crackers. I finished them both off in a matter of moments, with no nausea whatsoever. The nurse came back, and I asked to pee. I had an urge to go!!!

    I went to the bathroom, and I kid you not, this first time I peed, I DID NOT have to push to finish off my void. I also did not have any post-void urgency as I normally do. But, I tried not to get too excited. We went back to my recliner and she gave me some pain meds in my IV, as my back was burning really bad on each outer edge, due to the incisions, I'm sure. Within a few minutes, the burning lessened and I felt semi-comfortable.

    One thing I noticed, though, is that if I sit on my right side, I'm good. However, if I sit, lay, or even curve towards my left side, I can feel the pulses pretty strongly and sometimes even to a point where they are VERY uncomfortable. However, on my right side, sometimes I feel nothing, and sometimes I can feel a very slight tingling down there, much like a TENS or IF unit. I can't really turn the unit down, as it's only on 1, so if this feeling continues, I may give Paul a call to see if it's normal or what I need to do.

    I got dressed and rode home, gingerly on my right side. I got changed and took some of my meds. I have to get a snack to take the rest. Anyway, right before I changed clothes, I had another urge!! I was able to void again with only minimal pushing to start the void and NO pushing to continue and finish the void!!! AND, no post-void urgency or post-void increase in bladder spasms and pain, which is what I normally go through. Also, I got the first chance to look at everything when I changed. I've got one lead loose and attached to the generator, then another is taped up and waiting for day number five so it can be given a shot. Other than that, can't really see too much, just a bunch of gauze and tape across my whole lower back.

    I am excited, but I am trying not to get too excited just yet. Paul said that with retention, it can take up to two weeks to really see a difference. But, the fact that I've had urges already and the ability to finish without pushing is a small feat in itself.

    My back is feeling much better, very sore but no more of that burning feeling. Also, don't know if it's how I was lying in post op or if it's just a side effect of everything I've been through today, but my right hip/ thigh area is really hurting. If it keeps it up, I'll slap on one of my lidoderm patches later to help it out and maybe throw the heating pad down there.

    I don't feel really groggy like you do with general anesthesia, I just feel kinda tired and beat up. I do notice that I have a touch of nausea right now, but at the same time, I'm really hungry, so I'll give something light a try.

    Well, folks, this is the beginning. I've had the generator for just over two hours and have seen some improvements. But, they could be flukes...I don't want to do the touchdown dance quite yet. But, so far so good!

    I hope I remembered everything to share. If anyone has a specific question about any part of the procedure or the first stage itself, feel free to ask! And thank you again for all your thoughts and prayers, they definitely helped more than you will know!!!

    Claudia

    ~Claudia

    "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



  • #2
    Claudia! What wonderful news! Dr.Evans sounds like a hero to me! Im so glad the urges are comming...Im the opposite too many urges I hope your pain and nausea will subside soon so you can enjoy your releif! Keep us posted!

    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


    • #3
      great news.. I hope you contiue to have sucess
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        Good to hear from you. I do hope this is just the beginning of good things for you.
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        IC 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


        • #5
          Hi again! Well, I ate some frosted flakes and some new apple chips (my, are they yummy and have zero fat!!) and the nausea is gone! Also, I am able to lie flat on my back now. I can't move around too much because my back is so sore, but the stimulations that were uncomfortable before are not bothering me on my back right now. Haven't tried the left side yet, I think I will wait a while for that.

          Well, gotta go....getting another urge!!! :woohoo: I would be worried since I am getting so many, but I know how much fluid they give you in surgery, so it will take me a while to get it all out.

          Claudia

          ~Claudia

          "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


          Comment


          • #6
            Another successful void earlier! It was so weird to complete a void with NO pushing at all and have NO additional bladder spasms or urethral pain following the void. Or urgency. I have to stop now, I don't want to jinx it on day one!

            Well, I am VERY sore in the lower back...some ways I sit, it feels like I broke my tailbone. The pulsating is still weird, sometimes I can feel it, sometimes I can't, sometimes it feels weird, like pressure in my anus, sometimes, if I still turn too far to the left, it hurts. But, all in all, so far so good, I think!

            Claudia

            ~Claudia

            "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


            Comment


            • #7
              Glad you did so well today......hope your success continues
              Please let us know how you are doing tomorrow.
              Miss Bessie

              Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

              Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

              Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

              Comment


              • #8
                A little lesson in Electricity

                Well, I thought it best that I share this with those of you planning on or considering interstim. It's one of those embarassing stories we'd rather just keep to ourselves, but if it might help someone else, well, I'll share!!!

                So, I was doing pretty well, but like I mentioned earlier, was having some discomfort when I would shift into certain sitting or lying positions. So...let me give a little background on the external generator so this makes sense...there's a dial on it that turns from off to 10, I think, and that is what you use to increase the intensity of the pulses. There is also a cover and underneath are 4 little switches, numbered 0-3. The switches indicate each nerve that is connected, so you have four choices, basically. The rule is, you use two of them to create and conduct the current. Each little switch has 3 settings, +. -, and 0. + is on and - is on, and 0 is off. So, you will place one on + and one on - to create a current, and the other two remain off at 0.

                So, I remembered from my rep that you can play around with the dial settings as well as the switches to try and find the best and most comfortable setting while achieving the best results. So, since I was having that discomfort, I decided to change up the switches. Also, there is such a great connection from the leads to the nerves that I only have to turn the dial to right about 1, so I thought I'd just change the switches real quick. Okay, LISTEN UP EVERYONE THAT WILL GET A TRIAL INTERSTIM: DO NOT, I REPEAT, DO NOT CHANGE ANYTHING ON THE GENERATOR WITHOUT FIRST TURNING THE DIAL TO "OFF." Once you do that and make whatever change to the switches or anything else, you will slowly turn the dial back on and slowly turn it up to the desired setting. Let's just say, I know now what it feels like to be electrocuted or tased, and it sucks bad!!!!

                Luckily, I have a high pain tolerance and it only lasted for a second...though it seemed like forever!!! Before I knew it, I was literally screaming. So, please, no one make the same goofy mistake that I made and try to do ANYTHING to your generator with the dial still on, no matter how low it is set.

                On the positive side, I did finally name my generator (Patrick). I have noticed with the new setting that I chose that my urge wasn't quite as strong and I had a teeny bit of urgency after my last void, so in the morning, I will likely TURN PATRICK OFF and try a different combination of the switches.

                ~Claudia

                "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


                Comment


                • #9
                  Ouch! Sorry that happened to you.

                  Once, when I had my trial, the dial that goes from off to setting 10 got stuck in my clothing -- I normally used it around only 1, since my positioning was so great, but when it got stuck it got cranked suddenly up to 4 -- that was NOT pleasant!!!

                  Let's say, I don't miss that box, but I do know certain things can cause changes in stimulation with the permanent implant too. So far, nothing has changed mine, but then I haven't gone through any security systems or anything....
                  ****
                  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


                  • #10
                    I use mine just under 1 as well. And that's why I thought I could just switch it over, but apparently the nerve that I switched to is WAY more sensitive than the other, since it scorched me and it was set only on 1!!!

                    Poor Jen, I can't imagine getting turned up to 4! I really hope that doesn't happen to me. I can definitely see how it will be a magical thing to get rid of this box. But for now, Patrick is doing a great job and I love him!!!!

                    I, too, have heard about going through certain store security and things like that. But, I have heard that generally it will turn your unit off if anything...is that the case or can it suddenly turn you up or something? If so, I think I'd probably walk around with my remote in my hand ready to go! Can you imagine how strangely people would look at you if you walked into Macy's and started yelling and convulsing due to the implant getting dialed up? LOL.

                    ~Claudia

                    "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


                    Comment


                    • #11
                      No kidding... LOL

                      I don't know... I think it turns it off, but I have heard of occurrences of it getting turned up. Medtronic is actually sending a medical alert card to carry around, and they suggest presenting it to someone in charge at the store and asking if you can go around the security system. I don't know if that would always be convenient, so I'm going to have my remote handy too.

                      The card is also supposed to help explain to airport security and other security with metal detectors why your butt sets off the machine
                      ****
                      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


                      • #12
                        I agree, seems like it might be a bit of trouble to try and wave someone down in the store and get them over to the door to ask them if you can go in another door! LOL.

                        I heard about the card that medtronics sends. Also, I have heard that really you aren't even supposed to go through airport security...does anyone know if that is correct or if you can still go through and just show them the card? I had heard that you shouldn't go through at all, you should show them the card and be hand wanded or whatever. Anyone with an interstim know the answer?

                        ~Claudia

                        "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


                        Comment

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