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  • #16
    Hello , i have my inplant since febr. 21 , 2003.


    • #17
      Well sounds like the inner-stem has done great for most. I am scheduled to have the trail implanted on March 1. My doctor has had great results except with one patient. He also has made it very clear that is doesn't make the pain go away but it has been know the help some. He also said there will be days when your flare is bad you will have to use more pain meds. than on days when it is not. He said everyday is different for every patient and you have to do what works for you. He said that if he had this painful disease that he would do it in a heartbeat and not think twice. They also have a conference once a month with a Medrodonic representitive that will explain everything and answer any question you can think of. She is also the one that assists is the implantation of the device. My doctor has two nurses that has been in training for the programming, etc. He lets them do all that and stated he wouldn't know what to do without them!!!! Tami
      [email protected]


      • #18
        I just got a my MEDTRONIC INTERSTIM trial device

        I thought I would post this;
        I wish I would have been more prepared.

        The interstim wire is put the holes on the tail bone. I didnt know thats how this would be done. Instead of 2 cuts the Dr. had to do 3 cuts. The cut on the tail bone and the cut where the wire comes out are just fine. The third cut has hurt really bad.

        The Dr came in to see me b4 the operation and he asked where my pelvic pain was at so I showed him and he said he would see what he could do about it. I dont know if what he did has helped any of that. When I am in pain I am crabby and just want to be left alone.

        The Rx gave me the wrong pain med s so I had a reaction to them and started itching all over the place.

        I was to get a 'card' to carry with me for medical doctors and so forth ( MRI s medal dectors and magnents)but they didnt give me one so now they are telling me that I have to call the company and get one myself, I thought that was a bit rude.

        I didnt know that my Medicare wont cover the implant unless I get at least a 50%improvement in my symptoms until the day b4 the operation.

        I dont know why I had to get the 3rd cut other than they couldnt get the wire into place.
        The setting I am on right now is at about 2.5 and it is to feel like some one tapping down by my bottom/vaginal area on the right size.
        I had potassium put on my allergic reaction medical bracelet (the plastic bracelet they put on you in the hospital) because of my IC and nobody seemed to understand why so I had to explain it 5 different times to the medical staff.

        Also when you get an Interstim they suggest that you get a medical alert bracelet to have on you at all times.

        They also said things like horse back riding and things that bounce you around to much are to be avoided. I asked if I can go roller skating lol and they said "No" if I were to fall that could displace the leads. Lol I dont rollerskate any more.
        No lifting more than 5lbs for about 6 weeks, no reaching or twisting of my torso either.

        Other than the PAIN from the 3rd cut this hasnt been so bad. But that 3rd cut really must be deep.
        Oh, I like the putting the 'battery packed device' on my bra in the front that way the wire isnt in the way all of the time when you have to go to the bathroom.


        • #19
          Looking for help.
          I got my trial interstim on 08/31/12 and I was told 3 different things from three different people in the medical facility
          and I do not know what I should do.
          1st I was told 8 weeks of no lifting anything heavier than a milk jug, no bending, no twisting. Well is this right?
          2nd I was told that I couldnt get my stitches wet for a few weeks, I have to put the wire lead in a bag and tape it closed so it doesnt get wet, but my shower is so small that I cannot shower just the front of my all gets wet even though I use press and seal and medical tape. I have finished all of the antibiotics so I would think I am good to go???
          3rd I have been told to not do anything but lounge around because they dont want the implant-leeds to move. Well, what can I do and what cant I do????
          I squatted down to pet a puppy the other day and the owner was talking to me and I got some JOLTS that made my face go funny and I couldnt talk. It wasnt really painful it was just....jolting. I had to look away from this person and act like I didnt hear him, I turned away and turned the power down on my MEDTRONIC MT - battery operated box. My husband is scared that that might happen to me while I am driving and get in an accident.
          HELP!!!! Should I not have been bending and reaching so soon??????????????
          Last edited by ChrisNes; 09-08-2012, 07:59 AM.


          • #20
            It was extremely difficult to pin down my doctor on what I could & couldn't do during the trial period. In order to work, I needed to be able to lift 35 pounds with my arms straight. In the end, the doctor reluctantly put me on medical leave of absence starting with the trial & until the Interstim incision had healed. I still notice a change in stimulation when I lean over to tie my shoe, for instance. It's not too big of a change, & I know to expect it now. I think they've changed the shower protocol since I had mine, so I can't speak to that part.
            IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.


            • #21
              Hi, Thank you for the information about interstim.

              Hi, I dont talk to anyone or have a friend to help me. My family doesnt want to hear about my health. My brother told me to keep my health problems to myself. We had to stay with this brother when I went to get my trial interstim on 08-31-12 and when I was done with the operation I had to go back to his place to rest and he came home from work early and he asked why I wasnt in the hospital. I said it was a same day procedure and I started to show him the box for the interstim...well he didnt want to see it nor did he want to hear about it. I just want to cry, I dont understand why my family is not supportive. I try to be positive for others but I am so down. I guess I was expecting to much from the interstim. The doctor increased my fluoxatine to 60mgs, I am on 300mgs of Lyrica, and 40 mgs of savela. sorry if my spelling is off. Crud I hate my life. I just want all of the pain and problems to go away. I want to go away. The last 11 years of my life have been H___ and I have had enough, I cry and cry so nobody see me cry. I am down most of the time and I keep to myself.


              • #22
                I know exactly how you feel Chris. I have been diagnosed with atleast 7 chronic illnesses since I had my son 3 years ago. I got to go next week for the trial run of the InterStim device and I am super scared. I also can relate on the fact nobody wants to listen to you about your problems. If you ever need someone to talk to please private message me. I would also like to hear how your InterStim device is working for you. Cry as much as you need to I do all the time.


                • #23

                  How are you doing with the Interstim now? I know the days ahead of you will be better!
                  Diagnosed with IC in May 2011

                  Current Medications:
                  Elmiron 400 mg daily
                  Imipramine 75 mg daily


                  • #24
                    I had to post this again, I just love what this has to say;

                    The Spoon Theory
                    by Christine XXXXXXXXXX You can do a search if you want to know, it is her story.
                    My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
                    As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
                    I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
                    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
                    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
                    I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
                    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
                    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
                    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
                    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things
                    to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first
                    task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t
                    just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before.
                    You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else,
                    because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all
                    your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed
                    yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the
                    morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her
                    right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every
                    little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I
                    have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have
                    bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair
                    is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for
                    feeling badly that it took you 2 hours to do all this.
                    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I
                    then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they
                    are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less
                    "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may
                    be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not
                    want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but
                    I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
                    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as
                    standing on a train, or even typing at her computer too long. She was forced to make choices and think about things
                    differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
                    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she
                    only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner,
                    she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that
                    she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy.
                    I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something
                    fun, or clean your apartment, or do chores, but you can’t do it all.
                    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend
                    to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears
                    in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days
                    were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget
                    about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have
                    learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
                    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate
                    feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that
                    frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one
                    hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans
                    before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan
                    like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful
                    ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
                    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally
                    understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she
                    might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house
                    and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand
                    and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how
                    many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this
                    time with you.”
                    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends
                    refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon
                    theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t
                    just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much
                    for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has
                    become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend
                    time with them, because they have one of my "spoons".
                    © 2003 by Christine MXXXXXXXX


                    • #25
                      so far so good....I can go about 2 hours now b4 I have to go to the bathroom.

                      It hasnt done anything for my IBS, but I am only on the 2nd setting....and I go to get the implant on the 19th yikes.

                      I just havent been happy with all of the inactivity and pain......when I say pain it is from the pocket the doctor made already for the place the implant will go into. That one was a bugger, now it is ok.

                      I havent done I dont know if it is helping with any of my CPP or other pain...this doctor still thought he could help me with that pain right b4 he started the operation...i know some of u out there dont like it when I mention this but I can just go by what the doctor has said to me. It must be something he does with the placement of the lead. When I go in for the implant (hopefully medicare will cover it) I will try to ask the doctor what he did that HE thought would help. I can say that my back hasnt really hurt me but....I havent done anything yet to see if this is so. It has been 13 days since I got the trial interstim put into place.


                      • #26

                        Hey, I got my Interstim implant on the 19th and I took off my pad in my panties. so far no leaking with urge. I have 6 more weeks of doing nothing. The doctors want scar tissue to develope around the wires. I had a kink in a wire on my tailbone, the doctor thought that may have been why I was getting the surges, so he opened that up again and took the kink out. All is fine so far, I just have to keep telling myself not to lean over, reach, squat, or lift anything for the next 6 weeks. The pain med they gave me this time still gave me the itches. I am uncomfortable sitting in my chair so I just lay around. LOL I didnt know the device to change the settings would be so big. It is bigger than my cell phone and I have no room in my purse for it. I wld like to go to the post office and try it out lol...maybe when I am all healed Ill see if I set off any alarms.


                        • #27
                          Originally posted by ChrisNes View Post
                          Hey, I got my Interstim implant on the 19th and I took off my pad in my panties. so far no leaking with urge. I have 6 more weeks of doing nothing. The doctors want scar tissue to develope around the wires. I had a kink in a wire on my tailbone, the doctor thought that may have been why I was getting the surges, so he opened that up again and took the kink out. All is fine so far, I just have to keep telling myself not to lean over, reach, squat, or lift anything for the next 6 weeks. The pain med they gave me this time still gave me the itches. I am uncomfortable sitting in my chair so I just lay around. LOL I didnt know the device to change the settings would be so big. It is bigger than my cell phone and I have no room in my purse for it. I wld like to go to the post office and try it out lol...maybe when I am all healed Ill see if I set off any alarms.
                          Congratulations! I was thinking the other day that I am 2 years post implant and how wonderful that it is that every stinking moment of every day is not occupied with my PFD/IC... It is always there but not in the front of my mind all the time...Sigh, what a relief. You Really shouldn't set off any alarms, I have only 1x at Home Depot at Christmas time when they had their sensors set higher than normal apparently. It was acutually pretty funny. It took me a minute to figure out why I would be setting it off, then I told the gal at check out "Oh hold it's me personally, hold my purse!" So she did I walked through, the alarms went off and they sent me on my way. They never even asked why I set it off. It turned out that my IBS is better by about 60% I'd say. Though I didn't actually trial for that.. Good luck! I'll never regret my decision with to implant the interstim despite how I've had to change some things in my life because I have regained my SANITY!
                          This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

                          I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

                          NOTHING THOUGH will DEFEAT ME!
                          IC/PFD Diagnosed July 2009

                          Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

                          IC Diet since 7/2009
                          Interstim Implant 10/2010

                          Fibromyalgia (14)
                          TMJ (Adult)
                          IBS (Diagnosed at 35)



                          • #28
                            I had my trial interstim placed on October 29th, and it helped the frequency a lot, so I went through the permanent one. Unfortunately, due to a blood disorder I have some blood clots formed beneath my incisions and they opened up wide, exposing the battery device. They made a new pocket in my hip and placed a new battery pack in it. They had to leave both incisions open to heal from the inside out and I had to keep having my incisions packed twice daily for about 8 weeks. During that time, the battery/(s) were exposed and not properly grounded, meaning I didn't have the relief.
                            As of now I'm finally healed but will have to go back in to have my device reprogrammed. I had hoped for more pain relief because in '99 I had one and got TONS of pain relief. I did have more relief from the frequency and urgency until the battery pack was exposed, and I'm optimistic that when they reprogram it I will have some noticeable improvement.
                            My daughter also has severe IC and has reached her limit. She's out of options at this point and will be having an Interstim placed in February. She also has the same blood disorder I have (all hereditary) and so extra precautions will be taken.
                            For those of you considering it, if I had it to do over again, I would absolutely do it again. I'm not giving up, we can still do some programming and I'm praying my daughter's goes well too.
                            (formerly DonnaRenee1)

                            Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
                            Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
                            Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
                            I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!