No announcement yet.

what you should know

This is a sticky topic.
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    you should not have pain in your legs, if you do, then the leads are not placed in the correct position.
    On each lead, you have 4 electrodes, when you are having the adjustments to your stimulation, you should tell the technition doing it, what you are feeling. I get pain on one of the electrodes, it is not on, that electrode is not used...
    I hope you get relief from the interstim! GOOD LUCK!!!!!!!!!!


    • #32
      I don't really have pain in my legs, but sometimes if I turn up the intensity, it effects my right foot. My toes curl under. It's the strangest thing. The first implant that I had, I did notice that my legs got sore, might have just be a coincidence.

      Do you understand abou the trial? Then they go back in and permantly implanat the devise. The only thing that bothered me during the trial period was not being about to take a full bath or shower.

      Keep us posted>>>


      • #33
        Asn is right, if you have pain in your legs the leads are most likley not right. I have had my stim for 3 years. I have never had a problem with it.. I have fell 3 feet and landed on my butt, I have gotten gotten in 2 accidents where I was rearended.. once at a complete stop I was hit by someone going abut 20 miles.. and the other I was stopped for construction on the express way and got slammed by someone going 50 or so miles an hour..
        I have never even had the toe curls, that I hear about. I turn my sy stim up so I can feel it then down a beep until I do not.. rule of thumb girls you don't need to feel it for it to work. IF you have any problems with your stim during the trial do not get the implant, if the trial don't work, the stim won't either. the only difference between the stim trial and implant is one box is external and the other is internal. Also I wanted to make a comment about the elmiron, it did not start working for me untill the 8th month.. then because of other issues I needed to discontiue it.

        Rose, I never had leg pain, I was never told that it could cause me leg pain.. If you have pain and your doctor is telling you that, I am leaning towards that is what his patients are telling him. That makes me question his ability of doing the procdure. Ask to talk to his patients.

        I want you all to get the "BEST" doctors doing this implant. This is your spine, and nerves.. The Leads DO NOT get attached to or touch the nerves. Ask your doctor where he places the leads. Please, do not fool around with this surgery, if you have any second thoughts about having the stim done, it is one to many.
        'The will of God will never take you where the Grace of God will not protect you.'


        • #34
          I no longer have access to my doctor that did the interstim, but medtronics sends a doctor twice a month. I have scheduled my appt for this month to get it adjusted, but the only time I really don't like it is when I am in a flare, because I am extra sensitive and can feel the impulses. I turn it down during those times. My former doctor did adjust my implant when it was making my toe curl up. It didn't hurt, it was just freaky.


          • #35
            How is your Stim doing? Do you know you can keep it turned down all the time. you do not have to feel it for it to work. This is important to know. I turn mine up till I feel it then down one click at a time until I don't.
            'The will of God will never take you where the Grace of God will not protect you.'


            • #36
              Yes, that's pretty much what I do. I have it turned on now and can't feel it most of the time. With the first implant on my right side, it seemed less noticible, but when that one's surgery site got infected and they had to put another one in the left cheek, it just seems to be different, especially when I am flaring! I can feel it pulsating in my vaginal area. I have another appt scheduled to have another adjustment just to see if it will help with my freq during the night. I have really gotten better, but probably just because I am on so many meds to help me sleep due to my insomnia. I normally sleep from around midnight until 3:30 without having to go to the bathroom, but I don't know if it's because I am holding it and I wake up hurting, so it takes a while for the pain meds to kick in. So I am usually awake for about an hour before I can finally fall back to sleep.

              Thanks for the tip though!


              • #37
                your welcome, anytime... if you ever have any questions or concerns just give out a holler.
                'The will of God will never take you where the Grace of God will not protect you.'


                • #38
                  interstim therapy


                  Im new to this site came upon it doing a internet search i have read alot about the interstim my doctor wants me to have this procedure in March i have tried medication biofeedback and nothing works he went over the procedure with me but not thourghy i was wondering if anyone could give me advice on what rellay happens in the or and such on he told me for the test phase i would not be asleep is thei painful any help and any advice would be appreciated. I am apprehensive about doing this so any feed back would be great.

                  Thanks, Willow


                  • #39
                    You are put to sleep during the trial surgery. They do wake you up for just a short time, but you really won't realize it in the way you would think. What they are doing is just checking to see if they are touching the right nerves. It's really like "twilight" during that time. I can remember answering questions, but not the pain. I remember when they were finished asking the questions and the doctor telling the anesthesiologist to put me back under.

                    What I did was talk to patients that my doctor did the surgery on as well as watched a video. There will be lots of people that will tell you that it doesn't help with the pain...well it does and doesn't in a way. It helped me in that it helped with the urg/freq side of ic which in turn helped with the pain. My surgery was in 2002 and I have been on pain meds most every day since my surgery, but nothing like pre-interstim. Just talk and listen to as many people as you can before making the decision.

                    Best wishes!


                    • #40
                      oh no you will not be awake and if he says you will be it it time for a new uro. I can't even believe he would even suggest that you would be awake.
                      please make a list of questions you want answered and post them, we will do our very best to answer them as patients.
                      'The will of God will never take you where the Grace of God will not protect you.'


                      • #41
                        New InterStim Model

                        I just wanted to note that the newer, smaller model they are implanting now only has a battery life of 3 years (that's what my dr. told me anyway) and not 8 years like the older one had.
                        Feel Free to Private Message me or E-mail me at
                        [email protected]

                        Altough I have had IC symptoms in the past my main issue is urinary retention - I am DESPERATE for an answer. I have to self-cath every time I go to the bathroom and have been since 2000. I feel helpless. Any advice would be appreciated.

                        Interstim Trial on 12/21/07 - Didn't work so no InterStim for me


                        Worked - Ditropan 15mg (and helps you sleep!) Off it now though

                        Didn't Work - Vesicare, Enablex, Detrol

                        Macrobid 50mg/day for to ward off infections
                        Self-Cath (can't go on my own!) for retention
                        Birth Control - Nothing- Quit Yasmin (It's a Diuretic!)


                        • #42
                          I am sure it takes some sort of procedure or surgery to change the battery thus a bigger profit for the doctors and/or Medtronic. I thought technology was suppose to get better for the patient? Smaller is good but more cutting on the body isn't.


                          Originally posted by Shana1234 View Post
                          I just wanted to note that the newer, smaller model they are implanting now only has a battery life of 3 years (that's what my dr. told me anyway) and not 8 years like the older one had.


                          • #43

                            My doctsaid he was it in me for urgency because my bladder would only hold 4 cc's and my IC pain. It has helped wit my frequent urination, but on one of the incision where the trail wires came out of me has now for 3 months has something growing that looks like a blister. When it first came up he said it was polop and it waould go away. It hasn't and now he says it's heredity called it grandoloma I've never heard of but he is going to do srugery to remove it has anyone had this problem. He said it came from the nerve. I'm starting to get irrated with this doctor becasue all he semms to be worried about my pain meds which he gives my 30 narco to last a month which this stimulator does nothing for the pain and I agreed to the stimulator for releif from pain. He didn't even remeber the right side was turned on today when I told him I couldn't feel it like I was feeling it. This a doctor that had 65 patients schedule for one day this week. He's only in his office on Tuesday and Thursday and the remainder doing surgeries. What does anyone suggest. I am looking for any kind of advice. My head says I need to find a new urologist, but he's the only one in our town.


                            • #44
                              the stim is not for pain, it is only for urgency, frequency and renenton. Your doctor knew it was not for pain when he discussed this with you. Medtronics will tell you it is not for pain relief.
                              I would go to my gp and ask about the spot you are discribing.
                              good luck and keep us posted
                              'The will of God will never take you where the Grace of God will not protect you.'


                              • #45
                                My doctor said that it wasn't a cure for pain either, but I have had mine for going on 6 years, so I was able to talk to some of my doctor's patients that had the implant. The majority of them had some degree of relief from their pain. I can honestly say that freq/urg was a huge issue with me especially since I was feeling the need to void almost constantly, but I was secretly hoping that it would help with my pain. I was taking pain meds as if they were M&Ms and still in a high level of pain. Shortly after my implant, I could already see a huge difference in my pain level. My bladder was no longer irritated due to the constant need and pressure of having to empty, so that decreased my pain amount drastically. Like I have said, I still require pain meds but not nearly the amount prior to the implant, but I no longer have flares (just 2 in a year and a half) and I only take my pain meds at night since that is when my body relaxes and I notice the pain. As long as I stay busy, I don't focus on the pain.

                                I have heard people say that you don't need to feel the impulse for the interstim to work. I understand that and experienced it as well, but I keep mine turned up just enough so that I can feel the impulse just enough to know it's on. It doesn't feel uncomfortable or anything unless I am flaring, which that has only been twice in over a year and a half. We are all different. My doctor said that a number of her patients like to feel the impulse, but it is true, you don't have to feel it for it to be working.

                                I also read a posting that the battery life doesn't last as long anymore. I just asked my doctor about it during my last appt since my implant is going on 6 years old and I was wondering when I may need a new battery. He said that the battery life is the same as the one I have in my implant now. Depending on the usage, it should last another year or so. I have mine on almost 24/7 except if I have turned it off just to see how my body is doing without it....just a mind game I play at times.