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Some questions???????? Please help

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  • Some questions???????? Please help

    I just had the implant put in with no trial period because the Dr. Figured it was the same number of surgeries either way. I am being stimulated in the S4 area because of over response of the foot when stimulating the S3 area during surgery.
    1. Anyway I was wondering if anyone had immediate improvement upon turning on their interstim?

    2. I was also wondering where people on this board feel the stimulation. I feel mine in the top of the but and very near the surface and have had no results so far. In fact I feel all four leads in the same area. I have had an x-ray to check the leads but have not gotten the results from the Dr. yet.

    Thank you very much.

  • #2
    I had my first surgery in Sept of 99 and had immediate results, GREAT results. Had to have the surgery redone this October and the results have been slow to come but they are coming.

    I don't understand how your dr got your surgery okayed without first seeing whether or not the implant would help you. I had the original trial with my first surgery and the staged trial with this second surgery and I am NOT a believer in the staged trial. Yes, it has it's advantages but in my mind it has just as many disadvantages.....especially since it IS a surgery.

    How does your dr plan on finding the proper setting for you? How long between adjustments does he plan on making you go? Had you had the staged trial done, you would have felt the sensation that you are feeling now and your dr would have known ahead of time that the setting was no good for you.

    I believe that the interstim can be a great tool for people who have tried everything else and nothing has helped. But, it scares me that dr's are using it too soon in the coarse of treatment and that they are not keeping their patients informed enough.

    Are you working with your uro AND a medtronics rep?

    Sorry I had more questions than answers for you.

    Sending prayer that the proper setting is found soon for U~
    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
      WOW!!!
      This is sure scary when I hear that this doctor did the Implant instead of the trial first.. [img]confused.gif[/img] [img]confused.gif[/img]
      How would he know which sacral nerve was working for you???

      I would of asked if this doctor has lots of experiences in doing this surgery and also it would of been a great benifet to you to have your doctor let you get in contact with some of his patients and see how they did with this procedure from him....

      I have my lead wire placed at the S2 area and I got wonderful results with it in a day...
      The stimulations feeling you should be having if it is working , is near your rectal and your private area...

      Does he have just one electrode working or all four working??

      I agree with Teri, this procedure is a wonderful tool , but if the doctors are miss using this procedure...
      This is not very good for the ones that need it like I and many other people....

      I have had my now for almost three years and having just wonderful results too!!!

      I wish you all the best!!!

      ~~Debbie~~
      Thinking positive has got me through to another day!!

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      • #4
        It took me about 2-3 months to see the improvement. But it came and I'm happy. On a good day I can go 2-6.5 hours. I feel the stimulation in my upper leg and into my foot. I always hated the words "it takes time" but unfortunately it does. We've had IC for so long that it takes our bodies time to get used to having a foreign machine in theree. It also takes our bladder some time to figure out how to work with this new machine.


        Good Luck to you and Congrats on going through with this surgery.

        Kara in MA

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        • #5
          First thanks for all the feedback. However after reading you comments I feel I need to clarify some points. While my uro is a great surgeon he is only an okay Dr. However the reason we went ahead with the final implant first was because I live far away from the surgeon and he felt that no matter how you approacjh the situation I would need to surgeries. Either by doing the stagged trail and then doing a second to remove or to finish implanting. So by do the full system in one pass it was still only at most two surgeries and maybe one if the system worked the first go around. Also he felt that by doing the full system we would have some time to tweak the settings with a medtroic rep in the town I live in before deciding if the implant would need to be taken out. I am not sure if the Dr. was planning on finding an over active response on the S3 vertabre(sic) but he said had he placed the leads in that location it would cause leg pain so he opted for the S4 instead. I am not sure how the success of the interstim varies between the two locations, but I kinda got that gist the the S3 is the primary site. Clearly not doing any of the trials has caused this problem, but I don't blame the Dr completlt for that decision. I do some more questions if you have the time to answer. By the way the device has only be on for a week and I will not be checking in the the Dr. and medtronic until this monday, so perhap I am just not gving the treatment time, but I have had no improvement of my frequency to date.

          1. Some people say the system takes a month or so to work, but if that is the case then how come most only do the trial for a week before deciding if it is going to work?

          2. Also does anyone know the numeric setting that they use most of the day. Mine is set to the max as limited by the rep for now which is 6

          3. I still have some questions as to where some of you feel the stimulation. I feel mine in the upper but area off to one side and close to the surface which seems to be doing nothing for me as of yet. In fact all four leads feel the same to me as far as location of stimulation. The Dr took ordered an x-ray to look for lead migration, but I have not gotten word on that yet.

          Thnanks very very much for any help.

          Comment


          • #6
            Hi. Sorry about all the problems you have been having. I got my Interstim back in September. I had the trial period first...I felt relief right away. When I went to the bathroom after surgery I felt that my bladder had completly empty itself, which is something I have not been able to say for five or more years. After have the trial for a week I had the perm. on done two weeks later. I am still have good results with it. I have had to have 2 adjustments but other than that it works great. I have mine turned down low. It's not even at the max. that it is set to. If I did that I would be able to get around because of to much shocking going on. I feel mine in my private area and in my big toe on my left foot. I wish you nothing but the best....but maybe a trial period would have been better for you then you could see what nerves to put the leads on. Merry Christmas [img]biggrin.gif[/img] [img]biggrin.gif[/img] [img]biggrin.gif[/img] [img]biggrin.gif[/img]

            Comment


            • #7
              Hi ICman:


              1.Well to answer the first question!!!
              Let me tell you that the InterStim trial is much more different then the perm one ever thought of being..
              You feel the stimulation much more stronger and it it works almost right away or the day later...
              The Perm InterStim, it very different you do not feel the stimulation very stronge it feel alot more weaker stimulation, I guess that would be a easier way of saying it ...
              Why we say it takes a month or so to work is because of all the adjustments we have to have to get that right feeling of the stimulations...

              2.My doctor placed my InterStim ( pacemaker) setting at a 4.5 volage and my remote control setting at 1.5 volage every time I would like to turn it up...
              So your seem very high at this point...

              ALso my InterStim is program to come on every 5 seconds and shut off every 5 seconds...

              3.This seem that your lead wire may be to close to one of your nerves as well..

              I feel the stimulation in the private area if I turn it up to high, I keep it down so I don't feel the stimulation all of the time..

              I hope this has answer some of your questions..

              ~~Debbie~~
              Thinking positive has got me through to another day!!

              Comment


              • #8
                These answers will not match your questions, but here goes:

                1. S4 or S2 work for many people, but my body needs the device near the S3 nerves.

                2. During my 3 trials, for the first day or so, I always felt the stimulation going thru' my butt cheek and tailbone down to my big toe. After healing a bit, I felt the stimulation go thru' the tailbone into the bone area near my vagina or near the rectum.

                3. The stimulation during the trials really hurt if turned up higher. It especially pinched in the vaginal and rectal area. NOT comfortable, so I'd change the amplitude (left knob...not the one with the R) to be just below where I felt a slight pinch.

                4. The permanent implant gives me a similar pinching sensation near the vaginal area. It was not comfortable, but necessary; so, I set the device to just where I could tolerate the stimulation.

                5. My doc had me come in every 2 weeks for adjustments. Perhaps you can find a uro nearer to where you live to take over your case. Of course, s/he must be one who does these Interstim implants and/or other neuromodulators. In fact, some neurosurgeons and neurologists in your area might do these also.

                6. My device,both permanent and trial, worked just about immediately for urinary symptoms of frequency and urgency...especially at night. As soon as I was able to tolerate turning up the stimulation, it worked for me.

                Hope this helps you and others. I have been very blessed that the trials and the surgery helped. Keep an eye on the boards. Saw my doc yesterday after my 3rd trial....looks like either he will do another interstim for me or his neurosurgeon buddy will implant another neuromodulator for me. I'll try to keep everyone posted.
                Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

                SusanC

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