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For Claudia (topcop229) -- How'd it go?

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  • For Claudia (topcop229) -- How'd it go?

    Hi Claudia,

    I know you were scheduled to have your permanent InterStim implant yesterday -- I'm dying to know how it went and if you're doing okay. Let us know....
    ****
    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.

  • #2
    Yes, I've been wondering about you, myself. Hope all is well.
    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


    • #3
      Me to.... Was thinking about her...
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN 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


      • #4
        Anyone hear from her yet?????

        Comment


        • #5
          Nope, not yet.... hope all is well with her... although I did note her last activity on the boards was 11:14pm last night. Maybe she is just tired and waiting to post her story.
          Last edited by Sarojini; 03-03-2007, 05:20 AM.
          ****
          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


          • #6
            I've been waiting to hear too.

            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.

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            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


            • #7
              haven't heard a thing yet. I hope all is ok.
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                Hi everyone. I appreciate your concern and care for me. I'm sorry I haven't posted, I've had a lot of mixed feelings about several things going on here on the boards.

                Anyway, my surgery went well, I guess, I did opt for the twilight sedation and when I woke up, I was pretty comfortable because the local anesthetic was still in full force. I came home and decided to nap, and I woke up a few hours later in intense pain. The incision site is VERY, VERY sore and I can feel the generator just beneath my skin, which kind of grosses me out! I am hoping that maybe there's just a lot of swelling and it will get better.

                I have been alternating pain meds every four hours...thank God Dr. Evans gave me the breakthrough meds or I'd be in real trouble. I got very emotional last night I think just from being really tired and hurting really badly, and of course, my hip and shoulder and back started hurting from the odd ways I have to sit or lie down to avoid pressure on the incision site. Anyway, I cried (more like bawled, really) for several minutes and Lee just held me and hugged me and got me tissue.

                I was able to get a bit of rest over night, maybe 4 or 5 hours altogether. Still feeling a lot of pain and very tired. I am also still in a flare, so it's a bit difficult to tell if the stim is working. Well, that's not entirely accurate, I do know it's working because I am getting urges to void which I did not get prior to the stim trial.

                One thing that I found out from the rep yesterday that kind of upset me was that if you go somewhere that turns your stim off, it will reset it to default...so you have to go back to the doc to have it reprogrammed. I thought if a store security system turned it off, you just turned it back on, but apparently it can and usually does reset the whole thing. So, I think I will try to remember just to turn it off anytime I go to stores or a place with security sensors. (As long as YOU turn it off and on, the settings will remain intact). Also, for others with interstim, I went to Victoria's Secret and Barnes and Noble on Thursday, and one of the two stores turned off the temporary generator. I didn't realize it until I got home, so I don't know what store it was, but beware of both of them and just turn your stim off before entering either.

                Other than that, I am doing okay. We started putting mederma on all of the trial surgery scars to help them fade.

                Thanks again for everyone's support and concern. It means so much to me!!

                c

                ~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
                  I am SO glad to hear you are okay!! I'm glad it all went well... I'm sorry you felt so emotional last night, but I think that is probably normal when you're hurting.

                  I can feel my generator too. BUT, I asked my husband to feel around, and he swears he CAN'T feel it. It may be one of those things where we think it's more obvious than it is, just because it's a modification of our own body. Plus, the swelling underneath will go down and it will settle into place a little more; at least, mine did. You will also build a capsule of fibrous scar tissue around it (underneath the skin) and that will round things out and make it less likely to be felt -- I do warn you that when the internal capsule starts forming, about two weeks later, it will ache some, but it's not too bad. (This is normal; even the Medtronic website mentions this in their InterStim FAQ).

                  My own trial scars are pretty much completely gone already, and now that my stitches for the implant are out, my larger scar (7 stitch) is healing up. We have decided that it will fade to a faint little line. It is really not bad, even now, while it's still red... honest

                  As far as stores, I've gone to Walgreens and the grocery store (Harris Teeter) and was fine. I will remember the tip about turning the stimulator off manually before entering unfamiliar stores, now, though -- thanks for the tip!! I was actually going to call Paul the Rep about this issue.

                  Okay, enough... GO REST and get better.

                  (Same goes for me; I'm in a massive flare from going back to work just 2 days this week.... ugh.)
                  ****
                  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
                    Hope it is helping you

                    Claudia,

                    I hope you mend quickly and the interstim works really well for you. I dont' quite understand what it is for although I've heard alot about it. Is it implanted mainly to control pain or to cut down on the u/f sensations? How long before you begin feeling results? Anyway, I'm glad you had it done and am praying it is a huge success for you.

                    Dani
                    Dani


                    -Bladder surgery to correct reflux-'68
                    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                    -DX'd with IBS in 2000
                    -Rhabdomyolysis in 2001 (has not returned)
                    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                    -DX'd with TMJ in 2000-wear splint
                    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                    -DX'd with Epilepsy -2000
                    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                    -DX'd with Fibromyalgia (2006)

                    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                    Comment


                    • #11
                      I am glad all went well yesterday. Unfort. for some depending on the body type and how much fat a person has were the gen. is implant it can still be felt. For me this is one reason I am having mine removed. And there is others. NOT that this will happen, but be aware it can. It just depends.

                      Rest and take it easy and try not to over-do-it to much.

                      I hope I did not hurt anyones feelings by saying this, but I just wanted you to know that it is a possiblity..
                      God grant me the serinity to withstand the days ahead!!!

                      My myspace link...
                      www.myspace.com/patricia_luvs_matt


                      Patricia

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

                      Procedures:
                      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

                      Comment


                      • #12
                        Thank you for posting, Claudia to let us know how it went.

                        One thing I have found to be true about IC (and I bet it is the same with any condition like this) is that my emotions can erupt at any given time over the smallest of things. I think it has something to do with the pain cycle we have. Then you add major surgery to that and of course you are going to be emotional. Surgery is not a small thing.

                        Rest well, hon. I hope you heal very quickly and that you get great results from the InterStem.
                        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


                        • #13
                          Thanks everyone for caring and for checking in.

                          Dani, the interstim is NOT for pain, it is for u/f or retention. In my case, I have severe retention and constipation with no bladder urges until AFTER I either void or cath. So, the interstim has made me now have normal bladder urges, it has helped my retention greatly, and in turn (though this is just an extra benefit, not something that happens for all or even most, so it should not be expected) I have a few less bladder spasms and so a bit less pain. It has also greatly reduced my constipation.

                          Thank you patricia for the info. I'm sure you didn't hurt anyone's feelings, you are just being helpful!!

                          ~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


                          • #14
                            hey you, glad to see you posting, so sorry you are in pain.. When you go to your post op appointment have him shut off the magnets, and your problem will be solved.. If you do turn it off and on it can reset the settings..
                            I hope you start to feel better soon.
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              tigger,
                              Forgive me if this is a silly question, but what do you mean shut off the magnets? My medtronic rep didn't mention anything about that option. He did say that if I turn the stim on or off, the settings won't reset, it's only if something else turns it off that the settings can revert to default.

                              Thanks for your help!
                              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

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