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Is Interstim for pain control??

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  • #31
    I hear ya, if I call my doc and tell him I need reprogrammed (I haven't been in over a year) he says come right in, his nursing staff all know how to reprogram, and he never charges me for a visit. If your doc don't want to help you after its in then he don't need to put it in, thats one question to ask up front.
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #32
      You know that is one thing that bothered me with the first uro. When I had insurance of course they were charged and then I paid my co-pay. Then when I lost my insurance and had the wreck he started charging me $60.00 a visit to fix it. Of course it was hard to go in and get it done cause I did not have the money. Then he started saying the problems were normal, so with Jill's help and Medtronic I turned it off until I got help. Needless to say I will not go to him again.....
      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


      • #33
        You all are exactly correct. When I first met my doc and we were talking about the interstim he told me that as long as I am his patient money will never be an issue with me getting treatment. That was SO nice to here.

        I had gone to support groups locally and had always been told that the interstim is bad, very bad and any doctor who puts it in is a quack and just out for money. I just wish I would have had all the sides to the issue a couple of years ago. I could have saved myself a lot of pain. So, I want to try to make sure that other newbies (and oldies) have all of the info so they can make an informed, intelligent decision.

        I agree that I think the interstim works on certain kinds of pain. My types of IC pain must have been exactly what the stim works on because my daily pain levels are dramatically decreased. I have been in my first flare since the implant and even with that it is the most mild flare I have ever had. I have taken more medication but it has not held me back from my regular activities.

        So, good to hear that other people agree that interstim is not this big bad scarry thing that docs want to use to mislead their patients and make money!
        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


        • #34
          You know I could be one who completly dogged the Interstim, after all I had one mess up and the new one does not work right, but I try to stay netural. Post my story and my message so that others can see what might happen to them then I am also there and very supportive of those that have had great success. I never encourage or discourage anyone looking into the Interstim. Only thing I do encourage is research and plenty of it, good and bad. The best patient is an informed one. We all know that the Interstim should only be consider as a last resort, once all other treatments fail, even those with good outcomes on here state this fact, but like with every treatment of IC the outcomes can vary. Just because it did not work for me, does not mean it wont work for others and to me if it helps one person with the IC I am the happiest camper in the world, cause I totally hate for people to go through what we are going through. Usually we turn to the Interstim because it is our last resort and hopefully our savior in the battle to overcome IC. Luckly for me I did not have life time problems with my Interstim worries and should I did, my outlook may not be as netural as it is. Usually with the Interstim there is no in between, you either love it or hate it, but for myself I try to be that neutral reactor there.

          I am so glad it helped with your pain cause for some it does. And not all doctors are doing it for the money....Now my first one I believe did do it for the $$$ (Benjamins) but I know for sure my revision doctor did not...But there are still some out there that do and the other most important factor with the Interstim is a well informed and diversed and experience surgeron and after care.... Hugs to us all the 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


          • #35
            Pain

            I have been having alot of pain . My doctor does not believe in using narcotic medications. How can I make any headway with all of the other treatments they are trying on me if I can not get my pain under control.? Last month he is telling me that interstim is not for pain now today he says it is and it may be my next step. I am confused and feel let down. The biofeed back is not helping me. If I have the interstem done and in alot of pain is tylenol the pain med of chose of me here also.

            Comment


            • #36
              The InterStim is not for pain control. It is for urgency and freq. Very few have had pain relief from it. I have had 2 and neither has helped with pain.
              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


              • #37
                I agree patricia it is not for pain control. I also wanted to chime in saying that interstim is also for urinary retention also besides urgency and frequency.

                Comment


                • #38
                  HI all, I am VERY happy for all of you who have had a great interstim experience, it is always great to know a co Icer is doing better. The pain issue is a huge problem , I undertsand that the ICN and most all here tell evryone that interstim does not help pain, for those whom it does it is a bonus.
                  I belive the problem partially lies when you are researching interstim, just go to google and type in interstim + pain and hundreds of stories and medical articles telling of positive pain improvment, even for IC patients pops up.
                  I disregarded the obvious hack written stuff, but there was ALOT of what one would see as credible info on the fact that interstim can help pelvic and IC pain, so that to me causes a dilema, we tell people it is not for pain, but to research and when they do they find what I found. As you know my experience was bad with interstim, but I am concerned with how to let people know that though some have had sucsess, it is not the norm and can in fact cause more pain.
                  How do we balance this issue, the resaerch tells one thing, we say another, I know I wished I had listened to actual people who had been thru interstim , but I used the research available, I had no reason not to beleive these medical studies.
                  So my question is, what is the truth and how do we tell it?
                  I reaaly only want women to be informes as possible, it is a personal choice for sure, but those looking into interstim look at those of us who have had or have it for guidance.
                  Hoping we can all work together for the benifit of all,
                  Sonja
                  Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                  Support American Cancer Society Relay for Life
                  http://Relayforlife.org
                  Living life on hope and a prayer.
                  To read me and my family's story
                  http://ic-network.com/patientstories/sonja.html
                  Spinal surgery 04/06
                  Interstim implanted12/04
                  interstim removal 12/05
                  Hysterectomy 1998
                  Bladder surgeries due to hysterectomy,'98,99,00,01
                  DXx with IC w/ Hunners 1999
                  Chronic Pelvic pain
                  Chronic fatigue
                  Fibromyalgia
                  Depression/post traumatic stress syndrome
                  IBS
                  Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                  Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                  Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                  Meds:various pain meds,Soma (muscle relaxant)
                  Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                  and a few others I'm sure,depending on how good I have been on my IC diet.

                  Trying to keep a positive attitude, in a negative world.

                  Best treatment of all, Good Friends who Understand

                  Comment


                  • #39
                    So...

                    I feel like I am at the end of my rope here. I just had the Botox done and am seeing no results. I have it all: pain, frequency AND urgency. So what is there for pain other than taking a massive amount of percocet??!!!!

                    Comment


                    • #40
                      I can feel

                      I can feel your pain, i have been in constant pain since September and I have tried eveything. I have done rescue instillations, self cathing, interstim- which is not for pain no matter what you're told, and 3 hydrodistentions. None of which wored for the pain now I am taking vicoden and fentanyl patches for the the pain.
                      The interstim did work for the urgency and frequency, it was a very dramatic difference, I went from going 4 times and hour, to going 5-6 times a day., It didn't help with any of my pain though, so don't do the interstim for pain, but if urgency and frequency are an issue than maybe it will work for that............
                      Anytime you want to talk you can PM me and I am willing to talk.
                      Hope that I have been helpful.
                      Started Vaginal Valium Suppositories April 2014
                      Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
                      Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
                      Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
                      Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
                      Interstim repair December 2008,Removal of the Interstim August 2011,
                      6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
                      Diagnosed with Raynaud's Syndrome November 2013
                      Ambien 5mg for sleep.
                      Elivil 50 mg at bed
                      Lisinopril 20mg in AM
                      Effexor 225 mg
                      Oxycodone 10 mgs 2 x a day for pain
                      Baclofen 20mg 3x a day
                      Phenazopyridine 200 mg as needed
                      Omeprazole 20 mg at night
                      Lyrica 450 mg daily
                      Requip .50 mg at night
                      Ketorolac 10 mg as needed for migraines

                      Comment


                      • #41
                        To Myca, I can so relate. I didn't respond to anything either and botox was the worst I tried for me. After 12 years I finally have a reasonable life again. Here's what's working for me:
                        Motrin 800 mg. at bedtime.
                        Neurontin 300 mg. at bedtime.
                        I sleep in a TENS.
                        Acupuncture the front sites (bladder and corresponding points in the legs and belly) every 5th day. Can't be late even one day or I lose the progress.
                        Acupuncture the back sites (near the coccyx and corresponding leg points) every 10-14 days. I can vary the time frame on the back sites a little.
                        SANS unit once/week (acupuncture needle connected to an electric current)
                        Inferential Stimulator 20 mins./day over the low back.
                        IC diet.

                        I am now sleeping at least 25 nights/month averaging 6 hours and many times more. If I potty, then I can get another 1-2 hours. The days are still rugged but being able to sleep now, it's livable. Never give up!
                        Dianne

                        My bellydance "sisters" , our dogs, and me.

                        Comment


                        • #42
                          I live in the land of Medtronic, so my urologist has done many, many of these. She told me that no it is not designed or intended for pain... BUT that in her experience it helps the pain nearly all the time. She says that it interrupts the nerve signal to the brain and so it helps the brain not receive the information that it hurts... Okay makes sense. I have tried everything else. So I am doing the trial run mid January. I tell her all the not so good stories from here and she says she has never read any research or documentation on the bad stuff people here describe...So PLEASE tell Medtronic about your bad, especially the horror stories, so this info gets out to Dr.'s too. I HOPE and PRAY I am one of the ones it works for ... I am doing it mainly to get some SLEEP. I am up hourly to pee and NONE of the meds have helped that. IF I could sleep all the rest would be liveable I think... But if it really did help the pain too, that would be a miracle. I will let you know. Thanks for all the honesty here ladies !
                          45 year old
                          IC symptoms, all my life
                          Severe endometriosis since age 13, hysterectomy Oct 06
                          IC diagnosed 1/11/05, Interstim implant May 09

                          Comment


                          • #43
                            Interstim

                            I just wanted to let you all know that in 2002 I had the interstim implanted and it helped me with EVERYTHING including PAIN. I was pain free for 5 years and I would do it again. the intersim still helps with the frequency and urgency, but not the pain.
                            Sadly, I had a spinal cord stimulator put in on May 27th and have yet to feel any pain relief. Has anyone had success with the spinal cord stimulator?
                            I hope so, because my urologist suggested another interstim but I thought since the other was working (except for pain) that I should go with the "one" that is only for pain. I am thinking I made a very big mistake.
                            Thanks!
                            ~Wishing everyone improved health!

                            You, Lord, are all I have,
                            and you give me all I need;
                            my future is in your hands
                            .

                            Comment


                            • #44
                              Hi,
                              There is some really old post in this subject. My daughters takes a lot of pain meds and ativan and is wondering if the intersim would work for her. She has mainly the pain.
                              Since there is a lot of old posts, is there anything new about the intersim and pain control?
                              She would really really like to get off the opiates.

                              Thanks for any replies.

                              Comment


                              • #45
                                I posted that back in 2009. I still stand by my original Interstim Implant! It worked for me for 5 years and I would do it all over again. I know that everyone is different and all, but it was so worth it to me.
                                I got a pain stimulator in my back and its useless!
                                I would talk to your doctor about it, mine had done many surgeries with the interstim implant and he is top notch.
                                Good luck!
                                ~Wishing everyone improved health!

                                You, Lord, are all I have,
                                and you give me all I need;
                                my future is in your hands
                                .

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