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Insterstim is Wonderful!!!

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  • Insterstim is Wonderful!!!

    Hi fellow Interstimers,

    I wanted to report some more good news with my Interstim. I ACTUALLY WENT DANCING!!!!!!
    I can't even believe it! I went out on Saturday and danced my heart out! I have VERY SEVERE IC so this is truely AMAZING!!!! I was never able to do this before the Intetstim. I had to pee a lot b/c I was drinking but that is normal. The Interstim helps that horrible pain I had whenever I tried to move. I was able to dance for 2 hours. I still have yet to see a movie. I'm thinking of doing it this weekend! It's still a miracle. I'm going to hate going off of it, if and when I decide to have children. My life is so much easier to live now. I just hope the machine keeps on ticking and doesn't break or move or do something bad. But for now, I'm trying to be happy with each good day the Interstim brings me.


  • #2
    Wow, you can drink, too? My husband was having pina coladas while I was having bottled water on our cruise!
    We can help one another here. Sue


    • #3
      Kara that is so AWESOME! You go girl! I'm just delighted for you...



      • #4
        Hi Kara:
        I know how you feel about the InterStim..
        I am blessed each and every day of my life with it for sure !!!

        I have my life back again and almost able to do anything now after my little problem breaking my lead wire...
        I am back and running as good as new too..

        Just so happy for you Kara !!!
        You go girl and enjoy yourself too..

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


        • #5
          recent interstim stories

          I am reading lots of stuff about interstim, but it all is years old. My doctor is considering it for me, but I am leary after reading all the negatives here. Has anyone had any recent (2006) experiences with interstim? thanks, folks.


          • #6
            Kara you say that it helpes you with the pqin when you have to move. Did you only have pain when you moved I don't understand. You say you have severe ic , did you also have severe constant pain which the Interstim has helped. From what I have read it doesn't help with pain only frequency. I'm glad though thayt you are doing better. I hqve a lot of pain and my doctor recommended it but I,m reluctant to have it done since frequency is not really a problem when I,m not in a flare.



            • #7
              I think Kara is talking about that horrible urge pain. I had that it just stopped me in my tracks.. IT didn't help the reg bladder and flair pain tho..

              If your doctor wants you to get the interstim for pain, put on your running shoes and get away from him.. It is only for frequency and urgency, and some rentention.
              'The will of God will never take you where the Grace of God will not protect you.'


              • #8
                That is AWESOME. :woohoo:

                I just got my trial stimulator put in yesterday, and already I too am seeing a difference. A big one. I SLEPT 9 HOURS STRAIGHT LAST NIGHT WITHOUT GETTING UP TO PEE!!!!!!!!!!!!!!!! :woohoo:

                *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.


                • #9
                  That is awesome Jen :woohoo: So happy for you!

                  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


                  • #10
                    :woohoo: :woohoo: :woohoo: :woohoo:
                    'The will of God will never take you where the Grace of God will not protect you.'


                    • #11
                      :woohoo: That is wonderful :woohoo:
                      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


                      • #12
                        9 whole hours?!?!?!?!? WOW that would be like heaven!!!


                        • #13
                          YOu asked if anyone had good stories to report about interstim. I have had one for almost 4 years, and it is wonderful. I can go to the mall and not plan my shopping around where the bathrooms are located. And, i only get up once a night now! I tried all the regular treatments (meds, Elmiron, DMSO) with no improvement. The interstim has helped significantly with frequency. In fact, i can now "hold it" sometimes like other people do! While it is not intended to help with pain, i do find that my "flare ups" are reduced. If i drink or eat bad things (tea, coffee, citris, red sauce, etc), i still have to go a lot more. I just monitor my food like i did before, but its not the end of the world now if i have something bad. Before, i could not have a glass of iced tea unless i planned to sit at home the rest of the night.

                          I had great results with the Interstim. My only problem was the battery life. It was supposed to last 5-7 years, but i had to have it replaced after two years. I think my new battery is supposed to last longer, and they changed the position of the lead. Fingers crossed it lasts longer!

                          Despite the battery problem, i am thrilled with my decision to try the stimulator. Even if i had to change the battery every 2 years, it would be worth it.

                          Good luck, and i wish you all the best.


                          • #14
                            Bdelaune I see you live in Louisiana. I do to and I also have the Stim. In what city did you have yours done. I think the battery life depends on so much different things. Like if you have it set where the unit is on all day 24 hours, or if it is set to cycle, like so many minutes on then off for so long. And then again maybe you just had a bad battery. With all the problems with my units (i have had 2) I never had battery problems.

                            I am happy for you that yours is working so well

                            And to JEN all I can say is :woohoo: :woohoo: I know you were hoping for such great results and I know the perm will go the same way
                            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


                            • #15
                              Patricia1, i had my surgery done in New Orleans by Dr. McSherry at Memorial. In fact, my battery replacement was done about 3 months before the hurricane destroyed Memorial! What about you?