No announcement yet.

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

  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Hey Claudia glad your back, my Rep turned off the Kinetics in mine. Maybe that is what Tigger is talking about to stop this from happening. Barnes and Nobles used to do it to me and now it doesn't. Anyway glad your ok


    • #17
      you are probably right on the name... every time I went to best buy I was re programed. I had mine in a year before someone at the uro's office told me and they had them shut off.... I know have this thing in my butt lol, but to be honest I am not sure exactly what it means, just that when they shut it off you won't get turned off and on or re-programed. I do still my feel my stim.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #18
        The newer InterStim implants retain their settings if you turn them off before going through any place you suspect might screw with ya... it is an upgrade made in response to patient complaints about the ones made just a few years ago.

        *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.


        • #19
          Thinking of YOU!


          I'm thinking of you! I hope that you heal from the Interstim Surgery quickly.
          I had the old original Interstim put in in MA in 2001, so I am not up to date on how the new ones work. I had the rep turn my magnet off back then and it never happened. I still cary my Interstim Card in my wallet. I just wanted to let you know that I am thinking of you!

          Last edited by Kara29; 03-03-2007, 10:47 AM.
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


          • #20
            I want an upgrade lol
            'The will of God will never take you where the Grace of God will not protect you.'


            • #21
              So glad everything went so well with your surgery.

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


              • #22
                So glad that everything went okay with your surgery Claudia. All of us get emotional sometimes from the pain. I almost started crying at work yesterday morning for goodness sakes. Take it easy and thanks for letting us know how you are.

                I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                I have tried every oral medication as well as rescue instills and DMSO.

                I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                Also proud mom to the best Bullmastiff on earth, Claus


                • #23
                  Funny, the ones today are so much different, from even the 2nd one I got in May of 05. It was still like the one I had in 2001. Maybe I should try the newer ones, but I have had so much troubles with mine, I just am giving up on them helping me...
                  God grant me the serinity to withstand the days ahead!!!

                  My myspace link...


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

                  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


                  • #24
                    I did not know about the resetting. I've flown several times, and I really don't know if there's a difference in how it's working. I'll need to be more aware.
                    I hope all is going well for you Claudia - rest. Sometimes when we are tired, emotions are fragile.


                    • #25
                      I'm glad things went well.I was thinking of you.Sending you big healing Hugs!
                      And remember be easy on yourself & take it one day at a time !
                      Hugs Sandra
                      "Never Give Up."

                      To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

                      My Photobucket Link:


                      • #26
                        Sending you lots of hugs
                        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


                        • #27
                          you patricia, you can ask for a trial run for it, I think it has 16 leads and you can change the settings tour self.
                          'The will of God will never take you where the Grace of God will not protect you.'