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it didn't work for me

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  • #1

    it didn't work for me

    I had the lead implant done last month and will be having it removed on Friday.
    I have never received the diagnosis of IC, but I have similar, if not the same symptoms.
    If anyone is considering the procedure, I'll share my story to anyone interested. If you are like me, before the surgery I mostly read the "SUCCESS" message board. Hope has been getting me through this for going on four years. I'm back to square one. [img]rolleyes.gif[/img]
    Tags: None
    • #2
      Hi Ann,

      I tried to find your email and I couldn't....I am glad you posted again. I have been wondering how it worked for you. (It's Melanie from Minnesota too.) [img]biggrin.gif[/img]

      I had mine removed yesterday- big ,bad, bummer, so I know how you feel. [img]frown.gif[/img] I am currently walking around in a drug haze with a sore tush..

      We were going to do botox yesterday too, but my insurance didn't get pre-approved. So I get to do ANOTHER flipping outpatient procedure...urgh (I know my boss loves that).

      Anyway, I know how you feel and am here if you need a friendly face or a little "fluffing" about the fact that it truely sucks it didn't work for us (I didn't mind the feeling of the temp unit at all). I am glad I tried this though- do you feel the same?

      Good luck on Friday....I will be thinking of you!

      Hang in there... [img]smile.gif[/img]

      Melanie

      [img]tongue.gif[/img] [img]tongue.gif[/img] [img]tongue.gif[/img] [img]tongue.gif[/img]
      I am blessed to have an Indiana Pouch now
      IC since childhood, finally diagnosed at 31 yo
      PFD/Pelvic Pain,SI joint and LBP
      Low Back Pain s/p spinal fusion at 19 with more nastiness in back
      Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
      Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
      Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
      Hysterectomy 2/3/12 w one ovary removed
      Dry Eyes
      L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
      Still have issues, still take meds.

      I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
      Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

        Comment

        • #3
          Did the two of you have the staged trial? If you did could you share your experience and opinions as to what this procedure was like for you, both physically and emotionally......

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

            Comment

            • #4
              I am more then happy to share my experience....

              I have intractable urgency/ frequency. I have NOT been given the diagnosis of IC (because I don't fit neatly into the diagnosis)- but I have tried many of the drugs, behaivor modifications, diet changes, DMSO etc over the years (honestly I think I have it, but whatever) I have been a frequent potty girl since I was a kid. [img]eek.gif[/img]

              I found the first Urologist I really, really like this past fall. [img]biggrin.gif[/img] We tried several therapies and she offered Interstim. Since I don't fit into the "classic" IC picture, I decided to try it. I was the perfect candidate (urgency/ frequency without the pain).

              I was offered the Staged trial- and for me that was fine. I felt like if I tried the original, my risk for wire movement would be huge and then I would always wonder "did I do something to make it not work." I liked that if it did work, it was half over- just open me back up and pop in the device, or take all the wires out. I knew that some people don't get the same results when they do the original first, have the wires taken out and then have it implanted since they may not get the wires in the same place. I also knew that many people get a false positive with the original because you are laying around, your bladder is more "rested" and people can get a better response. With the staged I got to see how it worked when I was laying around, feeling yucky [img]frown.gif[/img] , when I was taking a walk [img]biggrin.gif[/img] and when I returned to work [img]smile.gif[/img] .

              I did the trial for about 2 1/2 weeks- we tried a bizzilion different settings and it just didn't work for me. I was still peeing 15-20 + times a day.

              Emotionally it was tough because I didn't ask enough questions about the trial and thought the it was only going to be 5-7 days. When it wasn't working and she wanted to extend it, I wasn't ready for that...but I am glad we gave it more time (we could have gone up to a month). It was hard for me also since I live alone, in a city with few friends...so I didn't really have a good daily support system. It was also a bummer since I had this weird idea that it was my decision if we implanted it (ie, it would work and I could decide) not that it could not work for me (which is what happened).

              I just had it removed. I am bummed it didn't work, since I really didn't mind the sensation. I know a lot of people have very strong opinions about this topic....I also know some folks are being "talked into" this, which is sad. My advice is to know the pros and cons and follow your heart. There is good and bad to all therapies and I think we all need to weight what we are comfortable with. I did a lot of reading on this site, checked out medical journals, talked to other health care providers, and talked to medtronics. I felt all the questions about the device were answered and I felt like if it worked, I knew what I was getting into.

              My other advice is take enough time off of work to plan for the surgery, take fiber and watch out for constipation (such a drag) and be good to yourself while you recover.

              I would do it again and I am glad I gave it a shot...


              Best of luck to all-

              I am always available to answer any questions like so many of you veterans did for me!

              Melanie


              [img]biggrin.gif[/img]

              [email protected]
              I am blessed to have an Indiana Pouch now
              IC since childhood, finally diagnosed at 31 yo
              PFD/Pelvic Pain,SI joint and LBP
              Low Back Pain s/p spinal fusion at 19 with more nastiness in back
              Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
              Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
              Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
              Hysterectomy 2/3/12 w one ovary removed
              Dry Eyes
              L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
              Still have issues, still take meds.

              I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
              Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                Comment

                • #5
                  To clarify - I had the lead surgically placed. Many physicians are doing it this way because it is less likely to move and, therefore, yield false negative results.

                  The surgery would definitely be worth it if it would have worked. It really wasn't that bad. I went to the hospital in the morning and was out before noon. I had an iv sedative, not general anesthesia, so I didn't have to deal with recovering from that. I went out to eat on the way home from the hospital! I had iv pain medication and I took an oxycodone pill and was feeling fine!

                  It is a nuisance trying to take a shower with a cable coming out of your body. One of the things that makes me feel better is taking a bath and I have not been able to take a bath since before the procedure and probably won't be able to for a few more weeks.

                  There certainly are drawbacks to the staged trial. It may be more accurate, but it still may be difficult to determine if it will work for you or not, at least until things settle down. To begin with, you are on pain medication. I was loving that pain medication. Pain causes urgency/frequency for me. So for a few days I was feeling good, no urgency/frequency, and understanding how people get addicted to the stuff, until I realized I was super constipated! Constipation causes urgency/frequency for me. I also had iv antibiotics and oral antibiotics for a week. So I started getting symptoms of a yeast infection. Yeast causes urgency/frequency for me.

                  Once I was off the pain meds and had treated the constipation and yeast, I was an emotional wreak. It was not working for me. I had decided in December that I was going to have the procedure and had been thinking of my surgery day as the day my life would get back on track. So again, stress causes urgency/frequency for me.

                  I basically really hated the stimulation. I thought it would be soothing and relaxing, but it made things more tense. I felt worse with it on. I couldn't take much stimulation. The amplitude was adjusted, but it was still a fine line between not feeling it and it hurting. Plus, the stimulation was mostly rectal, no matter what setting and I wasn't liking that. It made me feel like I had to poop!

                  So to sum up, it is a lot to go through emotionally and physically if it doesn't work. I still have a whole another surgery to go through tomorrow (to remove it). But, there was no way I could have known it wouldn't work unless I tried.

                  Melanie:
                  Thanks for your kind note. What is the botox for if you don't mind me asking? Happy recovery!

                    Comment

                    • #6
                      Thanks Ann!
                      Wishing you a sucessful surgery and a speedy recovery [img]wink.gif[/img]
                      teri
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

                        Comment

                        • #7
                          Ann,
                          Hi, again, good luck on friday. I, like you am a bath hound (these last few weeks are the most I have actually "showered" in years)- good news is my MD said I get a bath 7 days after surgery, which is Tuesday!!! [img]biggrin.gif[/img]

                          If you go to the IC message board under "other therapies" there is a nice post on Botox. My basic understanding is they do it under sedation, like a cysto. They use lots of little needles and inject the bladder lining with botulism toxin A in about 30 places and it paralizes the bladder wall and hence you go to the potty less. It can work too well (see the first post on that section)- but I am trying to find out the statistics on that. It lasts about 6-9 monthes. As I learn more (and I will be digging for info, I promise)- I will post what I learn as I think I will be trying this in June or July (my body needs a little time to recover over this).

                          Anyway, Best of luck, hang in there. Take ooooodles of fiber etc to avoid the constipation this time around (I know it is such a drag).Feel free to drop me a note anytime-

                          Your interstim trial twin-
                          Melanie [img]tongue.gif[/img]
                          I am blessed to have an Indiana Pouch now
                          IC since childhood, finally diagnosed at 31 yo
                          PFD/Pelvic Pain,SI joint and LBP
                          Low Back Pain s/p spinal fusion at 19 with more nastiness in back
                          Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
                          Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
                          Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
                          Hysterectomy 2/3/12 w one ovary removed
                          Dry Eyes
                          L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
                          Still have issues, still take meds.

                          I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
                          Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                            Comment

                            • #8
                              Hi Melanie:
                              Well, it's out.
                              The recovery has been easier than the first surgery. No constipation! I am bummed about my scars. [img]frown.gif[/img]
                              I read the posts about botox and will be checking back on that.
                              For me, I'm on to physical therapy, counseling, and possibly elmiron.
                              Take care,
                              Ann
                              [img]smile.gif[/img]

                              [email protected]

                                Comment

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