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    Hi, my name is Derek and I'm new to this site.I was diagnosed with IC when I was 15 I'm 20 now.
    I have been through the gamet of treaments from 6 or 7 Hydr's to all the various drugs,Elimron,antidepressants,Viadin, Tylenol-3,Anexia.Nothing has given me much if any relief, my pain had gotten so bad that I was willing to try most anything. At the first of the year I heard about Interstem Therapy and was convinced by the Dr. it would rid me of my pain so I had the test one done. I experinced excuriating pain right away the Dr. kept telling me that it was only surgery pain and it would go away.I did receive releif from the frequency but because of the other pain I couldn't tell if it helped the bladder pain.I went ahead and had the permanant one put in on May 26,2002 but the pain I was having never went away.After numerous visits to the Dr. and calls to him about the pain and his instance that I couldn't have that mush pain or I'd be crawling into his office I decided to return to my orignal urologist.He was not doing Interstem at the time I had mine.After consulting with Medtronic who makes the Interstem it was decided that the electrode was either defective or placed in in the wrong place.So in July I had the electrode removed and because my nerves where so irritated they didn't put a new one until Aug.about 2 weeks after that I developed a severe infection in one of the incisions and had to be hospitalized for 3 days they wanted to keep me longer but I couldn't stand it in there.By Oct. I decided to try another Hydro to see if I could gain some relief from the pain but I think it made things worse.I under went another surgery on the 18 th of Oct. they replaced the electrode again because my toes were curling so bad I couldn't walk.I am getting relief from the frequency but I am still not getting any relief from the pain.I am taking Elimron and Elivil at this time to see if the combo will help.I had my own business but because the pain got so bad I wasn't able to service my dealers I lost all my accounts I went to work for some one but I have been unable to put in a full day since Aug. so they put me on an unpaid medical leave.I had a house built back in at the first of the year and got married in May, moved right into my house because I couldn't afford a honeymoon nor did I feel up to going on one.Needless to say my wife has her hands full I'm afaird I haven't been able to be a very good husband what with not being able to work and being in so much pain all the time. Today is not too bad so I thought I'd put my story on the message board in hopes that someone who tried something I haven't could help me.I just saw a thing about a new med called Csyta-Q and when I called about it they said they would send me a months supply free to see if it works so I ordered it hope it helps.I've been told the only other thing they could do fro me is a bladder replacement, they make a new bladder from your intestines.This is something I don't even want to consider I've heard to many horror stories about people who've had it done and they still have the pain.Well that's all folks for the time being.

  • #2
    Hi Derek! Wow my heart goes out to you! You are a very brave young man to have been dealing with so much at such a young age, yet you have still managed to start a business and get married! I'm sorry things are so tough right now... I know what you mean about the pain; I had a business too which I had to close down when I got sick. You ask about what else you could possibly try; the one thing you didn't mention having already tried is pelvic floor therapy (although maybe you've tried it too, I don't know). It has helped me and a lot of other ICers a LOT, (see my story in the message board section on pelvic floor therapies) and if you haven't tried it you might want to consider it. Guys often assume that this approach is for "women only" but this is not the case at all. Internally, all the muscles and nerves (and things that can go wrong with them) are not so very different. I hope you feel better soon, whatever you decide to do! beth_s


    • #3
      I'm so sorry you have been having an extremely hard time. I haven't any experience with the interstim. Hopefully some of the guys (or someone with more experience) will respond to your posting. Try to hang in there.


      • #4
        Hi Derek, Sounds like you need to have some adjustments done with the Interstim....Teri has a similar experience with her toes (as well as myself and quite a few other 'stimers). I ahve to agree with the point made about Pelvic Floor Therapy....that can do a world of good and can help some of that pain. And since the Interstim is not for pain, has anyone considered giving you pain meds to help?

        I hope you find some relief soon.
        y. [img]smile.gif[/img]
        Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn


        • #5
          Hi Der! I had the same problems with my toes with my first surgery but it was working, for the first time in my life I was out of the bathroom and in the mall so I could live with it...then the sensation went from my toe, to my toes and to the calf of my leg and finally quit working. Two years after the original surgery I had a revision (last October) and so far I'm not having alot of luck with the dang thing. I am now on strong pain medication but as a result of the revision, I am in even more goes on [img]frown.gif[/img]

          When I read that someone had the surgery to help with pain it makes me so angry that I want to kill, or at least pray for that dr to spend a month with IC living in his/her body and then have the interstim put in to see how much it helps with their pain <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

          I am so sorry for the mess your life is in right now......I had to quit my job and get a whole $639 a month from SS for feeling like total s**t, there is absoluately no way I could even hold a part time job and on Friday we just learned that my hubby has COPD so I'm trying real hard not to think past this minute cuz if I do, I'm sure I will go completely nuts and NEVER get over it <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

          IC SUCKS and it sure can make LIFE SUCK TOO <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


          • #6

            Maybe one other thing would be a hypogastric plexus block. There were several posts about the block under "Other Treatments" and "Pain Management" during the past few months on this message board, so I'm not the only one trying it for IC-type problems. Pain medicine specialists (subspecialty of anesthesiology) do these, not urologists.

            My first one (3 years ago) didn't do anything. But my second one in August coincided with the best relief I've had in 3 ½ years (it just didn't last). Unfortunately, my third one (last Friday) doesn't seem to have worked (and it's pretty much at the end of the period when the steroid should have "kicked in"). I think the data I've seen in the medical literature indicates it "works" in about 50% of cases. So it could be worth a try.

            Historically, the procedure was invented in the late 1980s for cancer pain:
            But it's been used more recently for other types of pain "down there": e.g., Rosenberg SK, et al. "Superior hypogastric plexus block successfully treats severe penile pain after transurethral resection of the prostate." Reg Anesth Pain Med 1998 Nov-Dec;23(6):618-20.

            Some day I may be looking at Interstim…; getting pretty desperate.

            Best of luck,