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Is Interstim for pain control??

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  • #16
    If you are using the interstim for urgency and freequency and want to do that for that. I say go for it if that is what you decide. But the interstim don't help pain. I still get bladder spasms even though I have the interstim. I used it so I can urinate on my own and it helped for that.

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    • #17
      Questions

      Okay, I understand maybe it does not help with Pain during flares and such but what about spasms?? When I hold my urine then I get alot of spasms and that is whenI have alot of my pain. I also have a lot of leaking problems does it help with that?? Thanks Delinda

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      • #18
        I still get bladder spasms even though I have the interstim.

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        • #19
          Hi,
          I'm really new to this site but I have had bladder problems since I was 5yrs old. I was taken to the hospital in 1998 and told there was nothing wrong with me. I went through several doctors and finally i went on the internet and looked for my symtoms. I went back to the doctor and they did the scope and realized I had IC. It was pretty severe(Pain) and they tried almost everything to help me until nothing seemed to help,then my doctor took me off all pain meds and anti-depressants. In March of 2004, I had the interstim put in, it has helped with the pain slightly but not very much so I suffer pretty much everyday. They have resently found that I may also have endometriosis and put in an IUD. I have been bleeding for 6 months straight and the doctor says I have to give it a little while longer before considering a hesterectomy. I know I sound like I am rambling on but it's nice to know there are others out there like me as I don't have any support at home as everyone is tired of hearing me say that I am in pain.


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          • #20
            Hi everyone, I am a person who has a 2 Interstim's now. First one in 2001 and a revision done in May 2005. For me personnally neither has helped with my IC symptoms since the first 6 months since then it has been nothing but a bother. I am upset that there are doctors out there that are pushing this specifically for pain associated with IC and that it will help with that. It has never helped with my daily pain. In the beg it helped with the urgency pain but not the other pains I have. This is becoming a problem with this. I think more research needs to be done with the Interstim and the area of IC. I think there is a more success rate with those it was intended for. Only my opinion so please if you are having success do not take it personnally. You know I support all of us with the Interstim good and bad.
            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


            • #21
              I agree Patricia I have had the permament interstim for over a month now. and it has never helped my ic pain. It helped my urinary retention so I can urinate on my own. But that is it. My uro never told me it would help my ic pain. I can't believe that their is dr.'s out there saying it would.

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              • #22
                do you suggest staying on muscle relaxers to help with spasms or does the interstim make more sense.
                I understand maybe it does not help with Pain during flares and such but what about spasms?? When I hold my urine then I get alot of spasms and that is whenI have alot of my pain. I also have a lot of leaking problems does it help with that?? Thanks Delinda
                Interstim will not control your bladder spasms.. believe it or not I take flexeril for severe fibro and myofascial pain, and they "help" reduce my spasms.. also there is urised, uristat, pyridium. These pills are for bladder spasms. I would try those first..

                hopefully the uninformed doctors will stop telling people thet the interstim is for pain..
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #23
                  I get no spasm relief either, sorry to say.

                  Comment


                  • #24
                    I take Prosed it is the blue pill, it helps with my control sometimes It seemed to be more effective at the beginning. But now I feel like my body is just so immune to drugs. If I take something for pain then watch out because it slows down my bowels and then I have pain from that it is such a horrible cycle! My doc wants to put in the interstim really soon, But I just want to wait. But how long is the recovery? how long till I can go back to work? Maybe this summer I will try the interstim but for now I will wait. Thanks Delinda

                    Comment


                    • #25
                      I have been wondering about this issue for about 3 years. When my new doc suggested the interstim I asked him about the pain discrepancy. He told me that the majority of his patients have at least a 50% decrease in pain with the interstim even though that is not a reason to get it. He explained to me that it is not for pain and could not guarentee that I would be one of those who it would help my pain. I talked to patients who said their pain was much better. I talked to my medtronic rep and she said it is not for pain but there are women who do have improvement in their pain. Again, they can't promise that will happend but it does for some people. Because I had tried everything else there is to try in the world I decided I had nothing to lose so I tried the interstim. After the second day of the trial I had about an 80% reduction in my pain. It has gotten better and most days I have no pain at all. Now, it has tremendously helped my frequency/urgency as well so I am pleased with that and I don't know if by helping that it has helped my pain. I can't explain it and neither can my doc - except to say that it can and does happen. So, I feel like for people who are bed bound with pain or who have no other options like I was that to not try because of this whole debate that goes on I would have been cheating myself. I am now 5 weeks out with my interstim and have gone through my first flare with it. It was a typical flare but not as painful or as long as I usually have. So, that was better for me. As a general rule, though most days I am not having any pain or at least very little. So, I don't know what to say except that if you have tried everything you might be cheating yourself if you don't try the interstim based only on the is it for pain control debate. It is not for pain control but just might help your pain in the process of helping your other symptoms. I believe that is what happened to me. One patient I talked to had debilitating pain for YEARS and tried the interstim and has NO pain no unless she has a flare. She has a life and works etc... For years she did not get the interstim because she had read all about this debate and was led to believe that the docs who suggest it are quacks or are out for the money and that if they mention pain relief at all they just want your money. She believes now that she cheated herself from years of pain relief. I have been in that same boat and when my doc told me that it could help my pain I did start to never go back. I came on here and read everyone's comments and stuff and pretty much decided not to do it but something inside of me kept reminding me that I had nothing to lose. I had no life and was home bound and basically bed bound so what worse could happen?? So, I decided to try it and I already am doing things that I haven't done in months. I feel much better and am not taking near as much pain meds as before. I would say I have had about an 80-90% decrease in pain.

                      So, at the risk of sounding like one of those who gets caught up in those debates about this (I am not one of those and don't wish to start a debate) I just wanted to express my experience and let you all know that it COULD help. I may not and is not supposed to help with pain but for a lot of us it has helped with pain. So, don't write off the docs just yet - they may actually know what they are talking about! It might be worth it to give it a try. The trial is not as bad as it used to be. There aren't as many limitations because they use the permanent wires. The surgeries are not bad either so all and all it is very much worth the try. Caution though--you need a lot of money or good health insurance because it is a very expensive procedure.

                      So, sorry this is so long. I hope it makes sense but I just felt compelled to share all of this. If just one person could get the relief I have had it would be worth it!

                      Good luck everyone as we all seek for relief from this disease!
                      Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
                      _____________________________

                      DX: IC - November 2002 after hysterectomy
                      Interstim implanted March 2006 - died May 2011
                      Interstim replacement June 2011
                      Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
                      Docs: Pain management doc, urologist, family practice

                      Comment


                      • #26
                        mom nice reply. There are some that do and have gotten pain relief. And I actually believe that it might have to do with the type of IC pain you have. This why I stated in the beg. it helped with my urgency pain, but not the other pain problems I had. As we know we are all different.

                        And like you said should you have tried everything trying the trial could benefit them. I am so glad you that your urgency and frequency and pain has decreased and gotten better. I love to hear the postive from others, considering the problems I have had with both of mine I love the postive out of it. We all just want to something to help with our disease.

                        But there are some doctors out there that say it is for pain alone and that is not correct. And that is why were were stating that it is not for pain control, because of the misconception about that there are some that have it done for that reason alone and it did not help them.

                        Caution though--you need a lot of money or good health insurance because it is a very expensive procedure.
                        This is a very good warning....And it also should be taken into account for the future also. When I lost my insurance it took me 8 months to find another doctor and thank god for the charity hospital in my town. Most towns dont have this though.
                        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


                        • #27
                          I actually believe that it might have to do with the type of IC pain you have. This why I stated in the beg. it helped with my urgency pain, but not the other pain problems I had. As we know we are all different.
                          this is exactly what I try to explain to people... you do have to know the difference between the bladder pain and the urgency pain.
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #28
                            Thanks Tiger people do need to understand the different pain types associated with IC. And for a doctor to state that it will cure all types of IC pain is not correct....We want people to be knowledge about all aspect of the InterStim.
                            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


                            • #29
                              yes, diffently! they need to know everything it can and cannot do, and the good it can do and the bad that can happen.... you have to make sure that the doctor doing this surgey knows exactly what he is doing, if not it can bring devostating results.. I did research the better part of a year and a half..

                              My doctor is an IC specialist, and top ten in the unitited states. He told me that the interstim will not help pain, it is not designed to help pain, and it is not designed to help IC patients, it is designed for urgency, frequency, and some patientes wit retention.
                              'The will of God will never take you where the Grace of God will not protect you.'

                              Comment


                              • #30
                                I think that is what is most important with this. An experience doctor. Like I say and experience doctor and a well informed patient make the best teams..Mine had experience with implanting of it, but not so much the after care and problems that could arise. For that I blame him, not the unit...But my new uro who put the new one in is just the oppisite. I know for sure he gets hardly nothing out of it, because he does them at the Teaching/Charity hospital so you have patients there that have no money to pay for any of it. When I had the 2nd one done it was the first time the hospital had done this surgery there. But he has so much knowledge it makes me self at ease....
                                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

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