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ANOTHER FRUSTRATED INTERSTIMER...

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  • ANOTHER FRUSTRATED INTERSTIMER...

    I'm on the same track as many frustrated interstim patients , I had the implant on October '01. I had a lot of reprogrammings, but 2 months ago, the rep. told me that my lead might be too deep. When he tries to change to a different electrode, my leg moves too much. So I always end with the same electrode, just different on/off settings.
    I will have a test the next week to see how the interstim is working with my nerves, not just asking where I feel the stimulation. Depending on this test, my doc wants to reposition the lead (it may be too deep) or try a new test in the other side. Maybe to change to another sacral nerve or to try to see how it works with 2 interstim...
    I'm very very scared, because I don't know what will happen, and I'm very frustrated, because I feel this is my last resource. If the interstim does not work for me, WHAT TREATMENT WILL WORK !!!???
    I was very confident and positive that this was going to be the right treatment for my urgency and frequency, but right now I feel that I'm at the end of road. I hope that when I come back from my trip to see my doc. I can give you all good news... PLEASE PRAY FOR ME! It is very hard for me to see my doctor, I have to arrange for airline tickets, hotel, car rental, etc every time I need an appointment…
    [img]mad.gif[/img] <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

  • #2
    Mary want kind of test is the doctor going to do on ther nerves?

    I'm prayer for you that everthing goes well to you. I welcome you to E-mail me any time my e-mail adress is [email protected]m [img]confused.gif[/img]

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    • #3
      tons and tons of prayers coming your way Mary....
      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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      • #4
        It is called nerve conductive studies, is to see how the interstim is working, not just asking you where you feel the stimulation, in this test the doctor can see how your bladder nerves are affected by the stimulation

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        • #5
          an update:
          my appointment was cancelled by the hospital, not my doctor...
          I have to wait for maybe 1 more month... I'm very frustrated!!!!!, I really need this interstim to work, or at least know why it is not working!!!! I was so excited that my appointment was coming in just 3 more days... At this point I really don't care to go thru a new test in another nerve or a new revision, I just want this frequency and urgency to go away!!!!!
          PLEASE PRAY THAT I GET A NEW APPOINTMENT AS SOON AS POSSIBLE!!!!!!! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> [img]mad.gif[/img]

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          • #6
            {{{{Mary}}}}}
            You'll be in my thoughts.
            Sending healing wishes,
            Melanie J.
            <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
            "The sun shines not on us, but in us." John Muir

            Living a happy life in spite of IC! http://www.ic-network.com/patientstories/melanie.html

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            • #7
              Mary I'm sorry that your apt. was cancelled. Is your interstim working at all? When did you have your interstim implated?

              I had my interstim implated April of 2001 and then I has revision done last Aug. 2001. So, I had my interstim reprogramed about 10 times but it works 50%. I had it reprogram last Thru. and the rep told me there is no more reprograming she can do for me.

              I'm prayer for you so you get a apt real soon!!

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              • #8
                I had my surgery on october 2001. I had more or less 5 adjustments, but when the rep. tries a different electrode my leg rotates too much if I'm lying down, so he always returns to the same electrode that does not make my leg move too much. It has not helped me, but my doc and the rep think that maybe it is too deep or maybe anther sacral nerve can work. After this test, I will have answers, and I will know what is next... Why did you had a revision surgery for? Was it as invasive as the implant surgery? did you had to stay overnight in the hospital?

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                • #9
                  Mary, I had the revision done because was not getting any response from it. I was going about 45 times before inplant and I was down to 8 times a day in the trail study. When they turned on the interstim I was getting sensation in my rectum and was going about 32 times in day. I had it reprogram about 5 times and then the doctor thought maybe the lead had moved. So I had X-ray done and he decided to move it to another spot. I had to spend 1 night in the hospital. It took him about 2 hours to do it and when I woke up in the recover I had more pain then from the first time.

                  Good Luck!! You may e-mail if you want to ([email protected])

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                  • #10
                    mary; i know how you feel. i don't have the interstim,but i have the neurostimulator which is pretty much the sameexcept the neurostimulator is put in to help with pain.i was susposed to have a new surgery done on mine last month . i had some problems that came up and had to put it off. when we got ready to do it my insurance is dragging their feet on paying for it. mean while i have a stimulator i could use if i wanted to lay down all of the time. i have to have it turned up so high it hurts my rectom so i only use it once in awhile.i am worried now what if the ins. doesn't pay for that or for my dr to finish this one .it is a shame .these surgeries all should all be approved even the ones later .i am sorry it just ticks me off the way we shuffeled around deedee <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />
                    dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 hrs..in 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.

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                    • #11
                      Prayers on the way for you immediately. May you get the help you need.
                      Gentle healing and hugs
                      Songbird
                      If you keep a green bough in your heart
                      the singing bird will come.
                      http://www.obsidian-sun.com/

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                      • #12
                        I sent the message by email, thanks everyone for your support, I{ll tell you when will be my new appointment date, and after it what did I decide to do next.
                        <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" />

                        I REALLY THANK GOD TO LET ME FIND THIS SITE AND KNOW ALL OF YOU!, I DON'T KNOW WHAT WILL I HAVE DONE WITHOUT ALL YOUR SUPPORT!!!!!!! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

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                        • #13
                          After 4 months of Elmiron therapy my physician referred me for Interstim installation. After watching the video and asking about success/failure rates and complications, I told my doctor he was crazy to think that I would subject myself to this. Especially the fact that I would have a buzz in my butt and could get shocked going through security at stores. I was very depressed because he told me that I was just going to be one of those people that the current method of treatment would not help. Well...... I decided if they can stimulate my nerve so can an accupunturist. I have been seeing one for about two months once a week, and what an improvement. She is also working on detoxing my liver from the 15 medications I was on at one time. She is also treating me with an herbal tincture for depression and it has worked much better than the three antidepressants the psychiatrist has me on. So one by one I am dumping the antidepressants and sexual side affects. [img]wink.gif[/img] Ya never know what might happen. I just would hope anyone considering intersim think long and hard and do a lot of research. Ask to talk to your doctors other patients about it not just the ones it worked for. Good luck on your healing.
                          Tennessee Donna D.

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                          • #14
                            Hi!! Chady
                            What problems do you have with your interstim? Why did you have the interstim put in? Did you have any good results with you? I've been having some problems with my interstim. I've been having some lower back pain on the left side where the lead is placed. I've been having some leg pain. Do you still have your interstim in? Have a nice day!!

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                            • #15
                              Mary,
                              Do you have a scheduled appointment to get your interstim out yet?
                              Also why is it that when negative post are made about the interstim they seem to disappear so fast. I do not understand that. What is the reason for that?

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