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Reporting Interstim Failures to FDA

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  • #16
    Hi Teri,

    No, what I am talking about is Interstim, the same exact surgery that you had done. Please refer to Dr. Siegel's chat transcript. He has been doing interstim for about 11 years and was very important in getting Interstim FDA approved. I was first enrolled in his frequency/urgency study in 1994 so I know a lot of patients that have had the surgery. At that time, he was doing the study with Interstim for pain, and the study continued for many years. You can see a copy of published study results at the ICA website. The study is about Interstim for pain. It is included with the papers that were distributed at the National ICA Convention last October. I believe there are other published studies on Interstim for pain as well but I do not know off hand where you can find them. It is not FDA approved for pain at this point and I do not know if it will be.

    I know everyone that posts on this topic is very passionate about helping others. I am just sharing my knowledge, in part, so people do not quit seeing their doctors if they tell them it may help their pain. This has been some advice posted. I mentioned two patients in my above post, they were CURED of all their IC symptoms (pain, urgency, frequency). They have not had any symptoms for years since having Interstim. I have know patients that have had partial success and I have known complete failures including awful outcomes requiring unsuccessful revisions as well. I decided to try the surgery despite the fact that I could not a long enough good trial because the wire kept moving on me. Of course, hind sight is 20/20 and I would not do that again or would I advise anyone else to. I was desperate as so many of us are.

    Lisa

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    • #17
      ~Lisa:~
      There is a new procedure call Synergy EZ that is like the InterStim that is for pain,there is a girl name JudyK that had this done this year ..
      My Urology is one of the invendor of the InterStim Implant..
      He is well known and travel all over the world teaching this procedure to other Urologist too!!!!
      I just thought you would like to know ok Lisa!

      Debbie


      Thinking positive has got me through to another day!!

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      • #18
        hi Debbie,

        Thanks for letting me know, I appreciate it. I already know Judy and am very familiar with the procedure that she had done. She is just an angel and I am so happy that her pain has been taken away with that procedure she had done. I am NOT interested in that for myself. That is far more experimental than Interstim and more invasive than Interstim. And, after my interstim failure, I am not up for that at this point in my life. The only nerve stim I would try now is SANS which Jill thinks very highly of and I am so suprised that more patients have not tried that before Interstim or any other nerve stim surgery.

        (((((((((((((((DEBBIE)))))))))))))))

        Lisa

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        • #19
          Hi, I had interstim done in June and stillhave probls with urg/frg, but that I think is mainly casused by stress. I still get retention and have to cathat times. There are many differrent settings for the implant and it is a trial and error until the right setting is found. Its not a cure,but personally for me it has helped with urg/frq, pain,constipation. Now when I fall off the "healthy wagon" by eating things like choc,juk food or smoking then I will usually go into a flre 1 o2 days later. I hve also faound when I go into a flarre and can't pee I have to drank the unit up, that is what the remote is for. You have to play around with this. Teri, I think you would agree on this one. I had a good day today, but had ribs with a sauce and that has bothered me tonight. I also drank water that was not Evian(I have proven to myself that Evian is the only water that does not irrate the bladder)If the bladder is irrated even 100 ml of urine will irrate it, so then I cath it out or be in pain. Best to get rid of it and dilute as well. More water more peeing. It has bonly been 7 months now and I still and having to go in for adjustments, I know there are good days out there cause I've lived them. Like I said for me foods,beverages I have to watch and smoking is a no no. and do not become constipated. I hate cranking the thing up but you have to withstand the buzzing for at least 24hours(me) and things seem to get back on an even keel, and also like I said, NERVES play a BIG part on my situation. The pain that it helped me with was the high bloating pain. I still get bladder burn and urethra burn,but I think that is foods and nerves again.
          Hope this gives some informtion to some people. At least I can go out now and not have to run to the john or have the constant feeling of having to go. If you have the implant and go to the bathroom and your bladdy does not feel comfortable after peeing and you have the feeling that you haave not finished best to cath to get it all out, and not let it sit there and "cook". Just causes more problems down the road.ANYWAY, this is my story and this is what works for me.
          Sandy

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          • #20
            I just re read my post and I would like to clarify, although I still have SOME problems with urg/frg, it is not like it was a year ago and as far as retention it is not the same as before the implant either. Each adjustment I have had has changed some for me , but it is still new to the body yet. This time last year I was usually with a foley cath,becauseif I self cath (in and out) I would have to go again in 5 min and there was nothing in there.Now if I really control my diet and TRY to keep the stress level down I do pretty good. I can have a flareless day and eat the wrong thing or have something worry me and it flares or whatever it does and I get the pelvic burn and the urge to have to go to the bathroom again. Ex. Today, a friend was to be transferredfrom one hosp to another then it got cancelled, he got upset and was talking to me about it and thenabout an hour later my bladder started to bother me. That and the ribs and sauce I had for dinner I quess. Now it s lots of water time again. When I flare I still have to cath to empty the bladder completely or it is very aggrivating and "burns" in the bladder

            Hope I explained things ok here. The long and short of it everyone reacts differently.
            Sandy

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            • #21
              Hi,
              I had the interstim surgery one year ago and it has been wonderful. I was going to the bathroom between 30 and 40 times a day and I never had to cath. I now only go around 7 or 8 times. It has changed my life immensely and I would do it again in a second. The surgery is a piece of cake. It has not done anything for my pain but as far as I am concerned half the battle has been won. I would rather only have to go to bathroom the few times that I do now and not get up at all during the night and be in pain than peeing every ten minutes and in pain. I hope this helps. Love, KellyB

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