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Why are Drs. pushing Interstim for pain?

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  • Why are Drs. pushing Interstim for pain?

    After reading some of your posts, I decided to post my experience. My main IC complaint is pain, not frequency or probs. with urine stream -- yet, there is a urologist I have seen in town who keeps calling me and offering Interstim. I have told him several times - IT'S NOT FOR PAIN!!!
    The interesting thing is, before he started pushing this, I couldn't even get a return phone call. And he told me he couldn't offer any help beyond an Elmiron prescription. Now he has even contacted my gynecologist, who called me with the Interstim information.
    Are they getting paid extra by Medtronics?
    And why would they ever push it for pain, when the literature clearly says it's NOT for pain????
    -- Confused [img]confused.gif[/img]
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  • #2
    Sharon~you should be confused. Alot of us should be confused. There have been some people who have been helped with pain after the surgery but I'll bet that for every one that's been helped, 10 haven't. I have had the surgery done twice and neither of mine helped with the pain. The uro who did my first one flat out told me that this device was not intended for pain and if it helped, it was just a bonus (that was in 1999) when I had to have it redone this past October this uro told me that he was having some luck with it helping patients with pain...well, I am NOT one of them and I knew from the first time not to expect it.
    I am so glad that you have read thru all of the interstim boards and have educated yourself with something to use against this uro. I would tell him, "you get me a signed letter from Medtronics stating that it will 'help' my pain and I'll consider it" and see how fast he jumps back.
    If I were you I would start the journey of finding someone who will treat your pain....could end up being a very very long journey. Took me years but I DIDN'T STOP [img]mad.gif[/img] I refused to be beat [img]mad.gif[/img]
    We just can NOT let these dr's take our hope away, we can't.

    tons and tons of hugs~
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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    • #3
      Sharon,
      As has been said many times on these boards, Interstin is for frequency and urgency, NOT for pain. I'm sure this is documented on the Medtronic website. Teri's suggestions are the best....get the Medtronics people to prove to this doc that this is true.

      I have been one of the very few that has had some pain relief from the Interstim. But, that was just a bonus. My doctor had me try the Original trial based on that. Since frequency and urgency was improved, I got the implant....and that was the only reason.

      Many, many people on these boards have had the interstim implanted, yet very very few have had any relief from their pain.

      Let us know if we can help you with this.
      Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

      SusanC

      Comment


      • #4
        Sharon, I agree with Teri, ask him for a written letter from Medtronics that it will help your pain. It wont happen, and if it does, save that letter, cause I am one of the ones that was told that it would help my pain, and it didnt. I was lied to by my doc, and the rep, and I hate them for it. I went through many problems with it, all because I was mislead into something that never helped me, and now I have more problems because their stupid device went haywire inside me. I dont understand why the docs and reps are doing it, all I can say is that they must be getting payed a lot of money for these things. I know my rep was putting in 6 a day for a while, and he drives a beamer and lives in one of the richest parts in the state. So he has to be making a lot of money. I have did a lot of things to try and stop them from lieing to people. I have spoke to medtronics about it numberous times, but what it comes down to is they are makeing money off of us also, so why do they care. Its not going to stop. Hopefully we can just post on here, and keep the word out that it doesnt help for pain, and if you dont have urgency and frequency, its probably not the route to go. I have stopped one pain patient, her surgery was already scheduled, and my rep had lied to her. I hope that I can help more to not go through what I, and others are. Its not fair!!!!
        Hope everyone is having good poddy days!!!!!!!

        ~Jasmine~

        Comment


        • #5
          ICSMILES,
          I have the interstim, and it has been done twice now...the first surgery was done wrong and I had serious medical problems after the implant....and my generator moved serious enough I had to go back to surgery for that twice.....then I loss the ability of my leg to function adequately...so I went to a different surgeon who told me it was implanted on the wrong side to begin with and he moved it to the other side....and informed me I have permanent damage from the other one....and I do I live with the pain of it everyday....I also am having diffucty with it again....in my spine and now it is serious once again and needs to come out and he will not take it out until insurance has paid him for the surgery he did to revise this interstim.....even though my spinal area is in pain and swollen and I am having difficulties....it was put in for the ic..and I was misrepresented about that completely.....not even did they get a good test result because the tester quit working.....I would say anyone thinking about this be sure you have all the facts and gathered allot of information, and be sure that you want this put into your body....it is obviuos others are having troubles with it also and I know another with problems due to this. I wish I had known then what I do now, and it does not help pain....a very few will get relief but, it is not for pain and it made mine worse and new medical problems. I would weigh everything about this before I had it done, and make my decision on all the knowledge I had gathered. It is the last time I will trust that the doctor knew exactly what he was doing.
          It is implanted in to your body and you know it is there 24/7...... I wish you the best of luck on trying to come to decision about this implant.

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