Announcement

Collapse
No announcement yet.

I need help from you, InterStimers.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • I need help from you, InterStimers.

    Hi:

    Just when I was excited about the coming staged trial, my dr called me that he had to exclude me from the clinical trial of Interstim. The reason is that it has to be tested/implanted on women who have given birth or don't plan for preganancy. I was so depressed when hearing my dr said so on the phone, actually I was weeping. I told him that I didn't plan to have a baby in the near future. However, he said the rule was set up by the health department. I told my dr that kind of rule is unfair. I know a lot of icers with interstim who are younger than me. He aggreed to work with Medtronic here to gather information about young women having implanted InterStim. I know there must be some here on this website. Would you mind giving me your address. Mine is [email protected]

    I am really sad now. I don't know why God is doing this to me. Please pray for me to go through this uncertainty.

  • #2
    Peiti,

    I am not one of those interstimers, but my thoughts and prayers are with you. I agree with you whole heartedly. You should be able to decide if you want the implant or not.

    with love,

    Jane
    jd

    Comment


    • #3
      peti,
      go to www.interstim.com get a hold of patience services and have them explain this to you. I had mine put in 4/16/03 and I was told b4 I went into surgery that if I wanted to have a baby that all it needs to be is shut off. I have never heard of any such rule... what does the health department have to do with this? the fda has passed this as an approved product. please keep us informed.
      Brat
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        I am going for my Interstim on September 11th, and I have to say, this is worrysome. I am 20 years old, and I of course plan on having children. I wonder why you can't get in on that study. Sounds a little troublesome...


        Hugs,
        Jess
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

        Comment


        • #5
          Dear Brat and Jesser,

          I know it sounded very unreasonable. But I live in a different country. FDA has already passed the use of InterStim in USA, however the health department here in Taiwan decided that Medtronic Taiwan has to do the clincil trial on people here to see if the device also works well on Taiwanese. The health department made some rules that my doctor and Medtronic here need to follow so the patients' rights can be protected. It sounds stupid, right. In fact, I think it is total bureaucracy, full of stupid unnecessary rules. If this trial goes well, then InterStim will be allowed to use on other patients with urinary urgency/frequency in about a year. So if I am not one of the five candidates, then I will have to wait about one year.
          I was so sad yesterday and cried all night. My doctor is collecting document of young women with implanted InterStim now. Please pray for me.

          Comment


          • #6
            grouphug grouphug grouphug Peti, I am not an instermier but I will be praying for you. God has a reason of why he is doing this. We may not know why now but we will later. keep posting and let us know how you are doing.
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie

            Comment


            • #7
              Peiti--

              I am so sorry that you might have to wait a whole year for possible relief! I didn't realize that you weren't here in the U.S. I wish you the best of luck, keep us posted!

              Hugs,
              Jess
              Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

              Comment


              • #8
                Peiti, I'm so sorry for you!!!, I ask this to my doctor before my surgery, and he told me that when I planed to have a baby that I should turn it off. At the same time I know a patient that is pregnant and has the interstim off!
                As far as I know is that at the delivery is safer to have a C sction o that the leads don't move when you are pushing.
                Again, I'M VERY VERY SORRY FOR YOU!!!
                LOTS OF HUGS!!!!!!!! grouphug

                Comment


                • #9
                  Peiti,
                  I am so sorry that you are not able to get the interstim right now. As you know, I am one of the people who is younger than you and has interstim. I just had the permanent placement July 22. I have yet to have children, but do plan on having them as soon as I find a husband. I hope you can get some relief soon. grouphug
                  Louise
                  West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                  [email protected]

                  Comment


                  • #10
                    Hi to you all,
                    I was told prior to my Interstim implant that if I was to have anymore children, that the unit needed to be turned off. This did not apply to me since i have had a complete hysterectomy 10 years ago for endometreiosis. I would contact Medtronics directly for more information...I will pray for you all...Tina angel

                    Comment


                    • #11
                      Peti, is there anything we can do. maybe all of use that have the interstim allow them to submit our names and ages??? I am 37 I plan not to have anymore children but my rep said it wasn't and issue only if I got pregnat to turn it off. my thoughts sre with you
                      Brat
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        Sending prayers and healing hugs across the water to you, Peiti. Try to take good care of yourself, even with this terrible news. Your IC doesn't need any more stress right now, OK?
                        Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

                        SusanC

                        Comment


                        • #13
                          Brat,
                          Seems like you and I were told the same information. Where and when did you have your Interstim done? I had mine in Orange Park, Florida in June. Is there a way we can help Peti with our information?
                          Tina C. angel

                          Comment


                          • #14
                            tina, lets get some research going and see what we can do... my email is [email protected]
                            Cindy
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              Hi, girls:

                              I really appreciated your response. I called the Medtronic representative last week and she told me my dr had collected information about young women with InterStim and sent the data to the health department here. Now All I can do is wait and pray. Thanks very much.

                              Comment

                              Working...
                              X