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Interstim side effects

What Do You Know About InterStim Therapy Side Effects?

Looking for a place to research or share your experiences with InterStim Therapy side effects?  You’ve come to the right place.  At PatientsLikeMe, more than 125,000 patients are sharing their experiences with all types of treatments, including prescription drugs, over-the-counter drugs, supplements and procedures.

Manufactured by Medtronic, the InterStim Therapy System is surgically implanted device designed to help patients reduce the number of urinary and bowel accidents.  It is FDA-approved for patients with urinary or fecal incontinence who have failed to respond to, or could not tolerate, more conservative treatments.  How exactly does it work?  An implanted neurostimulator delivers an electrical pulse to the sacral nerve, which controls the bladder and anal sphincter.  This pulse is sent via a handheld programmer.

During the clinical trial that found InterStim Therapy could reduce bowel accidents by half (and in some patients, restore full continence of bowel movements), reported InterStim Therapy side effects included infection, pain at the site, “pins and needles” and the neurostimulator breaking through the skin.  But what about in the real world?  That’s where PatientsLikeMe comes into play.

According to the six treatment evaluations of InterStim Therapy submitted by PatientsLikeMe members (10 of whom currently report using the device), reported side effects included “bladder problems,” “annoying sensation” and “bowel incontinence.” Three patients rated the side effects as “Mild,” while three others reported no side effects.

Curious to hear more?  Here’s what three patients, all of whom report multiple sclerosis (MS) as their primary condition, had to say in the freeform section of their evaluation:

  • “It has helped me! Aside from the surgery pain and the seizure I endured, I would have it implanted again.”
  • “Taking the InterStim was an act of desperation. I was about twenty when my bladder started to fail. The leaking and frequency still continue to be a problem.”
  • “The impact this device has had on my daily life is incredible. I truly feel this is the best thing I could ever have done for myself and my MS symptoms.”

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245 comments

  • I had my interstim put in January 31 2013 2 days ago had it removed because of constant leg pains .. Thought I would get better but if anything my legs hurt more … Worst decision I’ve ever made was to put it in … Had anyone else experience this and does the pain eventually go away .

  • I had the InterStim put in last Monday and was back at work on Saturday.At this time I have no problems. I will see my Doctor on Thursday and get it checked out.

  • I had the interstem surgery on 08 March 2013 in Grand Rapids Mi.. My trial period things went great. I had great results with the power going to the right side wire but not the left side so the permanent wire is going down the right side with the best results. The results are —not working at all. Almost as if I had nothing done and totally unlike the test results. I saw the surgeon for my four week check, told him my results and was told by him it was stress incontinence and that the wire is in the same place the test wire was. I have four channels on my exterior controller and have been thru every one of them going from zero on the scale all the way up to five. The rep told me to zeroize all the channels and start over and not very much voltage and see what happens. The answer is no change. I was told that there are three more programs that can be programed into the hand held control for different areas of impact in the wire but the doctor doesn’t seem to want to do this to me. Mean time my insurance has paid $25,000.00 for a surgery that isn’t worth a nickel in my opinion.

  • I have had my interstim since 2009 implanted for a neurogenic bladder. Meaning that most of the time I could not feel a full bladder or the urge to empty my bladder. As soon as I woke up from the surgery I felt I needed to go. BIG success. I have Hemiplegic Migraines (HM), which results in temporary paralysis of several parts of my body. It seems to me that is what cause my neurogenic bladder and bowels. There are times I have turned my device off, but slowly the neurogenic parts come back after I have episode after episode of my HM.

    I would hate for the Doc. to take it out. It empowers me to live a normal life and don’t have to cath. myself with all the possible infections. *Smile*

    *** Tulpje ***

  • my problems are frequent urination and not always able to empty. i am at end of trial period with no changes,when DR inserted the wires he was unable to find the correct nerves so after an hour trying he found 2 others he hoped would work, now the Dr. and medtronics rep want to try a 4 probe insert which has to be done in surgical setting for another trial period, saying the 4 probe has proven more effective. I’m very reluctant at this point, has anyone else ever had anything similar happen? What are your opinions on this therapy? Thanks

  • I have had my inter stim since April 2014. I had it put in for Bowel incontinence and was told it would help my bladder incontinence also. I have MS. I have not seen any improvement so far. I continue to have bladder and bowel accidents. I am now having leg pains and have wondered if it can be from the inter stim. I have changed the program and levels several times and see no improvement at all. Has anyone had leg pain with this procedure?

  • I got my interstim implanted when I was 16 years old for urinary retention. I am now 19 and have only had to use a catheter a few times since. I have had to adjust the settings here and there, but have had few problems. What I am having issues with is pain at the implant site. I have trouble sitting for long periods of time because of the pain. I also cannot stretch my left leg because of the stimulation (shock) I experience making my foot curl. Overall I recommend Interstim for urinary retention but only for a last resort.

  • I had 2 interstim implanted 2/3/13. I had a lot of pain at the implant site , and specially when sitting for or lying. I told my doctor he said the interstems take some time to go deeper under the skin. It’s been a year and the pain did get better the Interstim did go deeper under the skin. I have had shocks from the left insterstim and had to turn it off. My doctor said a wire could be loose but no one checked it. I did not get a lot of help from the person who was assigned to help me with these devices. My doctor answer was take them out. This was my last option I waited 8yrs. to try these as I had no Insurance when I hit 65yrs with Medicare + Ins he put two in. My question is why 2 why not try one first. I know the answer now the money they charged my Insurance. I have had incontinence for 14yr. due to two bogged up bladder surgeries.
    I feel my interstim are really not doing what I expected them to do.The doctor doesn’t take the time to reprogram them.To give me a better quality of life without being stressed and nervous when I go out and the embarrassment I have been through. I still have incontinence at times and have had bowel accidents. I am also having to catheterize 2-3 times a day and take Vesicare. I do not feel that the interstim are really doing a good job. I feel that the doctor has not done much to adjust these in the last year. It’s like there’s the remote do it yourself. I still can not go anywhere for long in case of an accident. I make it to work and home by catheterizing. My quality of life has not changed.

  • I had stage two interstim surgery in September 2014. Everything was working about 50% in helping with bowel incontinence. Late December I started to feel pain at the implantation site and things continued to get worse. I was told last week by my doctor that I had an infection (he couldn’t tell me how I got it) and was put on antibiotics. Two days ago the pain became severe. I went for follow up with my doctor today. The device is now eroding through my skin and has to be removed, but they couldn’t’ do the surgery until February 3rd! I’m in severe pain and I’m unsure if I even want to keep the leads in for the future. Since I’m not completely cured of incontinence should I give it more time to work and replace the battery after my infection is cleared up? Has anyone had similar concerns or issue?

  • Is the first trial a good indicator of the success of the permanent device? I have been on the trial for 9 days. I have bladder retention for years. I do not see much results. I still cath over 700ml twice a day and not urinating on my own much. My doc recommends putting the 4 prong permanent stem in with an outside control to see if that works before implanting the whole device. I am very unsure about the next step especially after reading some of these stories. I did see that some people with bladder retention have been helped. Does anyone else have good news. Help!!! I am afraid and a bit confused!

  • I had the InterStim device put in four years ago, and will have it taken out tomorrow. It has stopped functioning, and I am not happy with the performance overall. I have had greater treatment with taking Vesicare, which the urologist prescribed AFTER the operation. He thinks that the lead has become detached, but I just want everything removed– My body has been through enough. In my case, the implant was a 30K paycheck for the doctor. I have no idea when the device stopped working, which is a very good indication of how well it is NOT working.

  • I had the Interstim put in over a year ago and so far it has failed miserably! There is no difference…I also had a bladder sling put in and still no difference! Seems that maybe doctors are being sold a bill of goods about the value of this therapy…somebody is making a ton of money off us and meanwhile, we are suffering needless surgery! I am about to return to the doctor to see if there is anything else I can try…this is ridiculous to not have a way to correct a problem affecting so many people!

  • i had the Interstim implanted and it worked well for my bladder incontinence but the pain it caused at the site and down my legs made me have it removed after a year. I still have leg, siatic nerve, and site pain and have trouble walking, sitting, and standing for any length of time. I wish I never had it implanted. Vesicare helps.

  • I have had it for three years now.Just now having problems with it.It’s causing me a lot of pain at the site.It did help some not right now .Got go see my Dr next week not sure what next can anyone tell me anything about what going on please.

  • I am 45 years old and a 12 year breast cancer survivor this has come with horrible side effects to this day. My bladder has been horrible with pressure, pain, always the urge to urinate and nothing comes out. I have tried Oxybutin, Myrbetrig, VeSicare, and now Topavan and have had horrible side effects with all drugs to help control my intersitial Cystitis, over active bladder, leaking and horrible pain. Had urodynamic test and it shows i have a bladder of a 10 year old all from chemotherapy. I was hoping the side effects wouldn’t be so bad from the medicine but i couldn’t even swollen and the dry mouth and sore throat was so bad I had to stop the medicine. My next step is this Interstim, i’m very nervous about this.

  • I have my interstim since 2014. It is not working at all. My question to anyone is if any body has had problems with the stomach getting big. I have pain and told the doctor, however the solution was to take it out but he said it in a very rude way. I don’t know what to do. Can someone help please?

  • I’m just in the first stage and I did have the problem abdominal distention (stomach sticking out and hard). Doctor suggested stool softeners and laxative. Took the stool softeners which helped some. Don’t think my leads are in correct place because I don’t feel the constant stimulation. Keep upping the speed. Think I will opt for removal instead of step two.

  • i have had bladder problems for a long time! Tried several medications with no luck…. Doctor put in the interstim and most of the time it does good. But I still have a few leaks….is this normal? Just wondering… Thanks!

  • I had Interstim inserted 9 months ago for urinary urgency. It is working fine during the day and 95% of the urgency is gone. But it has not reduced my nighttime pee visits (3-4 per nite).

    My BIG problem is that my legs have lost 80% of their strength. When I walk 50 yards they start to hurt a lot. If I sit down and rest for 3-5 minutes I am able to get up and walk another 50 yards, the pain and weakness returns. Before Interstim I walked a lot with comfort.

    I’ve seen stories here and elsewhere about unhappy patients removinf interstim and experiencing bad leg pain after.

    Wondering if others have experienced similar side effects?

  • I had the interstim put in for bad bladder problems on May 12, 2015. I have tried many different kinds of bladder pills with no luck!
    This has helped a lot but I still have some leaks and sometimes just don’t make it to the bathroom in time. I WOULD do it again even tho it’s not 100% better….it is at least 75% better and that’s a lot!

  • I still am up10-15 times per night. Met twice with InterStem Rep. twice, still not working and its been in place 1 yr.5 mo.Not what I hoped for!

  • Need some advice regarding side effects of The InterStim. My doctor recommended the Interstim Implant as I have an under-active bladder and i completed (Stage 1) on June 23rd. Now, I have completed Stage 2 on July 7, 2015 however I am at the 1 week and 1 day mark and I’m now experiencing side effects such as “bowel incontinence.” In fact, I had to turn it off last night at 10:35 p.m. and I haven’t turned it back on due to the fact that I had 7 bowel accidents in that one day. Yes, I have a call into my my doctor and I emailed her but I haven’t heard back as of 5:30 CST today. I do not have a stomach virus and have been eating my regular meals…meat, potatoes, mac & Cheese, etc. Also, I called Medtronic’s as well and the representative told me that this is a side effect. He went on to say that I probably need a Program change but only my doctor can do that and my doctor told me the same on the day of the surgery. I can’t see her until next Thursday, therefore this device will not go back on until I see or speak with her. In the meantime, I would like any feedback on this. I got this device for Urinary incontinence and I would put of with Urinary incontinence over bowel incontinence any day. Lord help me! This has been quite an experience.

    Thanks,
    Kim

  • I have had the interstim implant for 15 years, I am currently on my 3rd one. It was put in to help with my interstitial cystitis, I also take Elmiron. Between the use of both of these I have been able to live a pretty normal life, up until 4 years ago. I started having severe pain in the groin area, and was not able to take a step due to the pain running down my leg. My doctor went in and replaced the wires, one of them were broke. After that I was pain free again for 4 more years. I just recently started having the same pain in my groin area again, and not able to take a step. For some reason this time around my doctor insists it’s not the wires, even though it’s the same pain and location. I have been reading more, and more about leg pain and nerve damage. When I ask my doctor, he says he’s never heard of it happening. I find it hard to believe that the doctors and Medtronic is not aware of the leg pain problems. Some patients have even filed a complaint with the FDA. I have also had severe stomach pain that goes away when I turn the interstim off. Is anyone else having
    similar problems?

  • I am on my second
    interstim I never really thought the first one worked well seen few results, then I feel on my knees when I tripped on a side walk and broke both the wires. I wanted to have it just taken out but my doctor talked me into another one, I have had a lot of back pain with this one right where the leads are. I also have a lot of high anxiety with it so I have to shut it off quite a bit, when I upset about something the unit goes crazy. Has anyone else ever experienced this? My Dr said she’s never heard that from anyone. I was just resently talking with a nurse from the same hospital it was placed at and was told the Dr.s get a BIG bonus every time one is placed in a patient. Now I know why I was talked into something that has not been very helpful. It’s also a foreign part in my body. Think I am gonna go back soon to have it taken out.

  • I have had 4 interstim revision since 2013. I’m currently having severe pain at the site of the neurostimulor. It feels burning needles sticking me. Has anyone else experienced this?

  • My father, 65 years old, had the Medtronic stimulator inserted 6 years ago and experienced pain relief. That was up until a 6 months ago when he started to experience severe stomach pain, severe leg pain, and constipation. The pain has gotten to the point where he was hospitalized and placed on morphine for the pain. Doctor’s ran all kinds of tests (colonoscopy, endoscopy, CT scans) with everything coming out fine. They are now turning their attention to the stimulator. I’ll post again as soon as we get more information on next course of treatment.

  • I had an implant inserted 3 years ago after a successful trial period. It has not really helped my urge incontinence despite trying all the different programmes. 3 months ago I had a fall and since then I have had agonising lower back pain radiating down my leg and across my lower back. This reduces me to tears every day. I had a ct scan but the urologist said he cant see the battery on the scan but eventually I have asked him to remove the implant asap as not only does it not help me but I have red hot burning nerve pain around the site of the neurostimulator . He was not at all keen to remove it due mainly to financial reasons but after 3 months of agony and total disruption to my life I asked him in no uncertain terms to take it out.

  • I have had the Interstem put in a year ago without good results. I have overactive bladder and was told this would work. I have seen the rep twice and nurse practitioner twice
    Have reprogrammed it without good results. Still having accidents and frequent uti’s. Pain at the implant sight and stomach pain. Went to see a 2nd urologist who has suggested botox injected into my bladder. Have scheduled that for next month. In the meantime I want the intirstim and wirrs taken out. Will my first urologist do this for me?

  • I hard a bad experience with the trial. I took the dr. about 12 tries (poking me with the needle) before finding the right spot for the 2 leads. I was not prepared for that.

    IS THAT NORMAL? or did she not know what she was doing?

    I pulled out the wires a few days later. Very dissapointed in the whole process.

  • I am on my second interstim for my bladder after a great deal of pain with the first one it was discovered that the implant came out of my hip and the lead wires were broken. It took three weeks before they could do surgery. The second stim was put in Juneof 2014 it worked for a little while but now i am experiencing severe hip pain that goes into my leg around to my back and no adjustment is helping my bladder have to urinate all the time cant hardly walk or sit without severe pain and increase in stimulator causes inplant to buzz around in hip. Believe it has come out again. Seeing a new dr this week to try and get some relief and to see what other options there are beside this implant. I want it out it is not worth the pain.

  • I had Botox 2 months ago. I would not have anything else done without a second opinion. I will never have them again. I have storms on both sides and hphave developed diarrhea uti’s one right after the other leg pain storms working off and on and now bowel issues. Tomorrow I go for EMG to heck for nerve damage on leg. I am having my regular Dr an internist do some work up on me now and try to find out what is going on. I have turned both of my stomach off and they will stay that way till I find out what is going on. I had none of these add problems until about 60’days ago from last surgery. So until we find out what is going on and I get more info and see a Neurologist and get some other opinions nothing is going to be done additionally to me. As far as I am concerned they can have these things back and keep them!!!! I am get Up!!!!

  • I just had stage 1 of the innerstem, due to bowel incontinence. It’s been 3 days and no changes. However, my nervous system seems to be on the blink, I have blurred vision, it’s feels like needles are pricking me, like numbness in my hand, sensation on right side of my face.. it’s just a weird feeling all over.. I did have the swelling in my stomach and hardness. I don’t think I’m going to the second stage..Anyone having weird feeling with the nerves…

  • I’m experiencing several bad side effects since I had the Interatim placed for my Interstitial Cystitis in May 2012.
    Including:
    Site pain & soreness
    Leg, arm, & full body jerking while I sleep.
    Nausea
    Poor bladder control & emptying
    Burning sensations throughout my body.
    Tremors/shaking
    Temperature changes
    Headaches/migraines/dizziness/passing out
    Siatica & hip pain
    Sensory issues

    I am planning to have mine taken out ASAP!

  • 05/2002’s 1st InterStim placed & immediate results. Replaced 3 times & only because internal battery was dead. Last replaced 10/2014.

    Unexpected issues resolved: had 8 – 15 migraines per year for as long as I can remember. Since 2002 (8) total. Awesome!

    1984 fractured right ankle (same side as implant) half of foot lacked feeling & balance issue.
    Now no balance issues & can walk easier.

    Yes my right foot jumps on occasion at night. Mostly when I stand for several hours.

    Implant needs to be bumped at times. I think it is caused by store theft equipment.

    Regular BM’s now.

    Now up 1 or 2 times a night & only when 2 glasses of wine are consumed. Prior to implant 8 – 12 times per night.

    I have had excellent results & referred several friends to my urologist.

  • I had the interstim full implant put in November 5th. The first program didn’t work but we changed it to another program and it is working much better. My problem is the amount of pain I am experiencing at the implant site. Please tell me this will subside.

  • I had the interstim implanted about 4 years ago for an oceractive bladder. It cut my frequency in at least 70%. It was a game changer for me, and I experienced no negative side effects. If the power was too high, it could curl my toes. It took awhile to tweak the right settings.

    Yesterday, I had it removed.

  • I have had the interstim for my bladder for almost 5 years. I have had pain off and on with the shocking and can not sit for long periods of time. Here recently I’m having horrible shocking pains in my vagina and butt area. I also have horrible pain in my stomach and back, I have been up for days now due to my pain. I’m also getting bladder infection frequently and bad smelling urine. I do not know what to do or how to handle this any help……………..

  • Hello,
    I had my stimulator fitted in April 2015, I am an triathlete and was really worried I was not going to be able to get back in competing, but I have and managed to compete for my country at the world para triathlon champs.
    Apart from some pain down my right leg and foot I have had really good outcome with MY bladder and no longer use a catheter.
    I am back at the hospital for my post op check and hoping to get some advice on the leg pain to see if this is normal.

  • I have had a unsuccessful sphincterplasty. Have severe fecal incontinence. Have any of you had the interstim implanted for this reason? If so, did it improve your condition?

    Feeling overwhelmed with my condition! 🙁

  • Anyone on here had the implant for constipation? Mine worked at first when first fitted in Sept 2015 but now not working very bloated & struggling with bowel movements. Pain also at incision site. Any help very appreciated thank you

  • I’ve read every comment on this blog and the post from Karen Leigh is most likely my situation. I had Interstim placed for urgency, frequency and IC pain. It was also recommended by my colon doctor for off label use for IBS-C. Surgery was done 10/2015 and I’ve only noticed reduction in frequency. No relief for IC pain and certainly no help for chronic constipation. Now I think there is a problem with leads because I’m not feeling any pulsation at all. Turned it up to highest frequency and feel nothing. I have pain in right hip and at insertion site. Sometimes it feels like the unit under my skin is on fire. I’ve been trying to get in with my urologist for over 2 weeks and have received no call back. I’m nervous about fragmented leads and damage it may cause. I’m also VERY curious as to whether people who have had it removed, had to pay for it? I can’t afford any out of pocket expenses. The only reason I had it done in the first place was because we met our deductible for 2015. Can anyone who had it removed tell me if there was major cost associated with removal?

  • Hi Des
    I have quite a bit of pain at incision site too, aches quite a bit & down my leg & sore. I’ve telephoned my bowel nurse but waiting a reply.
    I also have ibs & constipation anyone else had it for these problems?

  • Hi

    I just had 1st stage interstim placed for FI urgency and have a lot of pain on the incision, numbness of my hands, leg and jolting of my leg. I’m not getting any improvement for fi. It’s been 6 days. When do you realize that it will work? or is it just not working for me? have any of you had any of these leg symptoms?

  • Hi
    I’ve had Interstim for 4 yrs now for overactive bladder.. I’ve had to have it replaced due to a fall which I broke leads.. I’ve been having so many uti’s and discomfort for awhile now which makes me deathly ill.. When I go and do a urinalysis, it always comes back with no infection.. I’ve been living in Azoing and Cipro.. I’ve tried changing programs and yesterday I was walking around the house holding my bladder… I finally turned it off and I want to see how I get along without it on.. It dawned on me yesterday that it’s helping with emptying but causes all this other discomfort..
    Has anyone experienced any of this??? I have been so sick since Xmas
    Please let me knos

  • I had the interstim implanted 6 months ago for severe fecal incontinence due to a child birth injury and it has totally turned my life around. From being virtually housebound to being able to go out again is nothing short of a miracle to me. I have had no side effects and am 100 per cent happy with the device.

  • I will be having the InterStim put in. I’m wondering how much pain it’s going to be?? And also does anyone have it in due to constipation Let me know and thanks

  • i have had my bladder stimulator for about 4 years, i am having a feeling of a wire coming through my vaginia and I can hardly walk and to sit down it hurts so bad. I almost have to lay down all the time, or lean far back.. Is anyone else having a feeling. I go to the doctors Tuesday…

  • HI

    My partner has sns re-sited recently due to the wires been in the wrong place. A week after the surgery she has had severe pain in her bladder, back, buttock and her whole leg keeps cramping for 30 minutes at a time. It has been that bad that I have twice had to call 999 and she has passed out several times due to the pain. I see a lot of people on here have had similar problems, what I would like to know is has the pain got better or worse for anyone? and has anyone had a complete recovery from this?

    Thanks

    Elliot

  • Carolyn, are you doing the trial stage? I have just completed stage 2 of the Interstim for my bladder and kidneys….started with just the 4 day trial…but unknowingly at the time, and thinking it was just from the placement of the wires, I was in SEVERE pain….come to find out the wires pulled out of place and went to another nerve. So I waited 3 weeks and went through Stage 1 of the implant, where the wires are surgically implanted but the battery pack is taped down to the lower part of your back for 2 weeks. You can change the setting on the controller so if its too harsh for you, turn it down. You are not supposed to feel it all the time….it comes and goes, just a little vibration sensation. The worst part is the incision site. It does take awhile to adjust to…but it does work. If you ever have any questions you can always call Medtronics and speak to someone about your concerns. Anything else I can do, just ask. Good luck, and remember, if its too uncomfortable when they do it, tell them right away.

  • I have had my interstim for 7 years. I have Ms and it has helped about 75 percent. Sometimes more then others times. I’ve had the settings changed often and some work better than others. I now need the battery changed and my doctor has had me keep a journal with all the settings and it turned off to see if it is worth the battery change. I know my bladder stings when its off. I have not had all the pain others talk about. Most the time I don’t know it’s there. I had the twitching in my leg and toes during surgery and they got it fixed then. I believe some doctors know what they are doing and others don’t. I haven’t decided if its worth the money to put a new battery in.

  • I’ve had mine since July 2014. At first I thought it was working. Recently I’ve gone back to having leaky bowels after supposedly emptying them out. I have not been completely accident free as I was told that would pass it has not. I also am having such severe back pain most recently I thought it was sciatica. My doctor thinks it’s the interstim device implanted almost at the exact spot where I’m having the back pain. After reading all these comments I’m starting to feel like I’m not imagining things. My question to everyone is why are we not getting together and filing a class action lawsuit? I was made to feel like this was the greatest thing since sliced bread, now my doctor won’t even return my calls.

  • I had my interstitial trial, Thursday, Feb 4, 2016. I was told it would eliminate my bowel and bladder incontinence. At the start I kept a log of my voids and Bms. It was very painful to have the interstim put in. Everybody rushed. 4 days later it was removed. I begged for the,numbing medicine and was coldly told they don’t do that. I said I might as well remove it myself for which she coldly replied she can’t let me do that. I asked for a bandaid after she ripped it out of me and she refused. She put some cold water on some rough paper towel and said,”sorry for the cold water”. Starting that night I,woke up with pain down the,front and back of my right,leg and into my right,groin. Oh by,the way I am a RN and know some comfort measures could have been used. This interstitial was a hoax!

  • My day Starts out going pretty good for a typical day. I cath up to 4 times a day. Varying amounts of output from 75 ml to 275ml. I just don’t control the amounts. I can adjust my intake it won’t matter. My body doesn’t give the signal till it’s too late. I’m ready to try something else. My urologist has suggested I check the Interstim device. It may work better for me since I’m on so many medications. I’m too young to wear a leg bag, adult diapers, or. Carry caths.

  • I do not know whether it’s just me or if everyone else experiencing problems with
    your blog. It appears as though some of the written text on your
    posts are running off the screen. Can someone else please
    provide feedback and let me know if this is happening
    to them too? This could be a problem with my
    internet browser because I’ve had this happen previously.
    Thanks

  • Anyone had their implant flip over & cause severe pain in buttock @ down the leg? Been to see consultant & said it’s a fault with them they do flip over. Got to go back in for surgery to implant it deeper into buttock. Had to switch off as pain so bad. Just waiting for a date to go back in x

  • Anticipating interstitial trial soon; very nervous about it as I have other severe clinical problems such as stomach post surgical issues, severe IBS and Diverticulitis,severe constipation and interstitial cystitis. I am very thin with little body fat. Any advice any could share would be appreciated. I live now with a lot of pain and can’t endure more. I take care of a disabled friend who depends on me. Do not want additional or new pain/discomfort.
    Please share an opinion both positive and negative as appropriate. Thank you.

  • Had the permanent device put in Dec 2014. After 1 year it felt like it was poking out my skin and when I bent down you could see a lump sticking out my back, it was really uncomfortable. Saw my Consultant who said the device had rotated so I needed to have surgery to put it back in place, said he would stitch it to stop it rotating again. Had this done Jan 2016. It’s now 7 weeks ago and it feels exactly the same, sticking out my buttock. I also get alot of sciatic type pain all the way down my right leg into my foot. I’m going to try switching the device off for a couple of weeks and see if the pain goes. Has anyone else found it really uncomfortable driving a car with this device?

  • My doctor just informed me of Interstim. She stated that I would be a great candidate for this. However, I am trying to review all the cons and pros for this surgery. I had my whole large colon removed over 20yrs ago. I have a j-pouch. This past year I surgery for a fistula. I do not want another surgery but if it really works, my life would drastically change … The question is would it be for the better?

    Thank you

  • MO- I am going to watch your post and comments as I am looking for reviews too. I had my large intestines removed and have a J pouch as well. I have had fecal incontinence since my ileostomy reversal 14 months ago. I have tried everything and interstim is a last resort for night time accidents. However, my Dr. did say the percent of success goes down for us since we do not have a colon. I am hearing a lot of side effects and just not sure if its worth going through another procedure?? Can anyone else shed light on this if you have had Ulcerative Colitis/ or Crohns and underwent removal of colon…?

  • Question is for the people who had the device removed because it did not work and the other side effects it caused. Did your pain stop in the areas you mentioned, leg, groin, and back after the device was removed? Was there any permanent side effect? I am considering the device but after reading all of this I am really not sure. I have bladder retention and cath several times a day.
    Thank you

  • I was one of the first to get IS device implant in 2011 for fecal incontinence after a schicterplasty didn’t quite do the job. It started do to a episiotomy during delivery leading to a fistulaectomy where the Dr. Snipped my internal schinter. It took 7 years to diagnose. Thr trial went okay… and I could deal with the pain. Then came time after my 2 week trial for permanent placement. They also performed scar tissue removal from the other surgeries. I woke up during surgery when they were on the nerve. Very painful and I went psychotic. All of that would have been worth it. That was the trial. The 2nd stage with scar tissue removal I hemorrhaged and developed a hematoma. I was in severe severe pain and hospitalized for 8 days. Dr. Was horrid as her experiment didn’t go as planned. Switched Dr.s. She no longer performs. It seemed to work for first year. It got turned off some how and symptoms came back. Learned it was off. This also helped my stomach pains from IBS or muscle spasms leading to diarrhea…then incontinence. But eventually it all came back worse with legs pains that left me wanting to put a bullet in my head. I have right sciatica but it doesn’t compare to when my back/stomach/legs are in so much pain and I am having 4-8 or more bm a day. Usually making it…. sometimes not. I have complained to my Dr. A part of the same group and he said my pain had nothing to do with this. My vag/rectal area hurts as well. It often feels like when I am having a bm… I am delivering a baby out of my rectum and I feel the pain I’m my back, buttocks, and legs as well. The anxiety and depression is getting so bad…. some days I wonder if life is worth it. But when I am having good days or weeks… I realize some Dr. Somewhere has got to help me. The medtronics rep was a blessing. Without him I couldn’t have made it. But he no longer works my territory. He has been the one that helped change programs over the phone so I wouldn’t pee my pants… something I didn’t do before… and help adjust so the my toe wasn’t curling…. but now at almost 5 years… the thing turns itself off… and has also turned itself on. I think it migrates but was told it won’t do that. I also have a weird nerve pain on my right side of the stomach. Skin deep… not internal deep. Pins and needles.. shocking… but not as bad when it wakes me up in the night with my right leg. Jolts of electricity. With everything I have been through… I want it to work… be fixed… something… but I can’t live on pain meds. My tolerance has raised and now I have one more problem. By the way….. isn’t narcotics supposed to make you constipated? I am losing my mind. Afraid if they take it out I will be worse with these other side effects left permanent. Afraid to leave it in as the pain is so bad. And yes… my stomach bloats sometimes too. But that’s a part of the IBS. Or is it? I went from a water sport person always on the run…. to a house hermit most of the time who goes crazy when feeling good and having good days to do what ever it is that makes me happy. I have damaged and ended relationships over this… starting with my husband. My Dr. Told me not to tell my boyfriend. He recently moved in and there is no hiding. He knew most of it… but the incontinence is still a bit known but not discussed. Unfortunately he was the type ypu couldn’t farther in front of. I have changed him. Lol. He is being supportive but how much can one person take? I had to turn down sex tonight and lie awake with pain and a heating pad on my stomach. I had to take the pain meds… so sorry if this post is a bit mixed up or hard to follow. I am very happy for the successful cases… but how long will they last? I have a couple doctors supposedly discussing my not so simple case… very complicated in fact. Not once has anyone told me my legs pains can be from this device until I found this site. I can’t wait to see what my Dr.s say…. because when I told the nurse on the phone the severity of my back/stomach/ and legs…. she acted very concerned. Although they cancelled my appointment as they needed results from another hospital on a test. I found out today also… they claim they sent them immediately. What a disaster.

  • IS put in for fecal incontinence. Trial went okay… and I could deal with the pain. Then came time after my 2 week trial for permanent placement. They also performed scar tissue removal from the other surgeries. I woke up during surgery when they were on the nerve. Very painful and I went psychotic. All of that would have been worth it. That was the trial. The 2nd stage with scar tissue removal I hemorrhaged and developed a hematoma. I was in severe severe pain and hospitalized for 8 days. Dr. Was horrid as her experiment didn’t go as planned. Switched Dr.s. She no longer performs. It seemed to work for first year. It got turned off some how and symptoms came back. Learned it was off. This also helped my stomach pains from IBS or muscle spasms leading to diarrhea…then incontinence. But eventually it all came back worse with legs pains that left me wanting to put a bullet in my head. I have right sciatica but it doesn’t compare to when my back/stomach/legs are in so much pain and I am having 4-8 or more bm a day. Usually making it…. sometimes not. I have complained to my Dr.s Who is all part of the same group and he said my pain had nothing to do with this. My vag/rectal area hurts as well. It often feels like when I am having a bm… I am delivering a baby out of my rectum and I feel the pain I’m my back, buttocks, and legs as well. The anxiety and depression is getting so bad…. some days I wonder if life is worth it. But when I am having good days or weeks… I realize some Dr. Somewhere has got to help me. The medtronics rep was a blessing. Without him I couldn’t have made it. But he no longer works my territory. He has been the one that helped change programs over the phone so I wouldn’t pee my pants… something I didn’t do before… and help adjust so the my toe wasn’t curling…. but now at almost 5 years… the thing turns itself off… and has also turned itself on. I think it migrates but was told it won’t do that. I also have a weird nerve pain on my right side of the stomach. Skin deep… not internal deep. Pins and needles.. shocking… but not as bad when it wakes me up in the night with my right leg. Jolts of electricity. With everything I have been through… I want it to work… be fixed… something… but I can’t live on pain meds. My tolerance has raised and now I have one more problem. By the way….. isn’t narcotics supposed to make you constipated? I am losing my mind. Afraid if they take it out I will be worse with these other side effects left permanent. Afraid to leave it in as the pain is so bad. And yes… my stomach bloats sometimes too. But that’s a part of the IBS. Or is it? I went from a water sport person always on the run…. to a house hermit most of the time who goes crazy when feeling good and having good days to do what ever it is that makes me happy. I have damaged and ended relationships over this… starting with my husband. My Dr. Told me not to tell my boyfriend. He recently moved in and there is no hiding. He knew most of it… but the incontinence is still a bit known but not discussed. Unfortunately he was the type you couldn’t fart in front of. I have changed him. Lol. He is being supportive but how much can one person take? I had to turn down sex tonight and lie awake with pain and a heating pad on my stomach. I had to take the pain meds… so sorry if this post is a bit mixed up or hard to follow. I am very happy for the successful cases… but how long will they last? I have a couple doctors supposedly discussing my very complicated case. Not once has anyone told me my legs pains can be from this device until I found this site. I can’t wait to see what my Dr.s say.

  • I would be interested in class action suit. Does anyone know if one exist yet? This has big one big bad experience and I just now find out I didn’t lose my mind and I have the symptoms as most of you! Did anyone else have to take narcotics causing an additional problem?

  • I am scheduled for the 1 stage interstim on 4/13. After reading all these comments I am really leary!! I already have severe back and hip pain on the right due to an old injury and will be having total hip replacement later this year. I do not want to cause any more pain than I already deal with on a daily basis. I was hoping to get my incontinence issues dealt with before the hip replacement. Will also be having pelvic floor reconstruction following this. I was told that I had 3 types of incontinence and needed to do both the interstim and mesh/sling to address all issues. Now I’m not really sure what to do as all these comments seem to have more negative results than positive!!

  • Just had my implant re positioned after flipping over & sticking out of my buttock causing pain. I’m 12 days post op & just had stitches out & it still hurts like hell so not switched it back on yet. Am I right it took two weeks last time when it was first put in to settle down & the pain to go? Anyone else in same position? Had it put in for sliw transit constipation & ibs thanks

  • hi, i had my 1st interstim placed in 2012, then had to have another in 2014. it has worked great for my urinary retention. however, about a month ago, i started noticing difficulty fully emptying, straining in order to get anything out, and a very uncomfortable pressure feeling in my pelvic area. i have tried changing the program and am not retaining a lot (i have checked a few times and it is about 100-150 ml) but am worried about these symptoms, which i have not had since it failed 2 years ago. any advice?

  • I had my first Interstem put in Dec 14′. Just had a new one put in March 15′. The machine site will not heal. It seeps and has been infected ever since. Pain in the site is miserable. I’m seriously thinking about having it taken out and going back to self cathing.

  • Karen Leigh. I am most like you. I just had my interstim put it and am now in the trial phase. I have slow-transit, ibs-c, fecal incontinence, urgency issues. Having strong urinary flows right now and a mixed bag of bowel issues. Having a hard time sleeping on right side and woke up with a rapid heart rate. Still painful at incision site. Playing around with the adjustment seeing if it helps.

  • Hello.

    I am thankful as I possibly can be for all of you sharing your experiences with regard to interstim. I am sorry so many of you are having serious problems, but am, again deeply thankful to you for allowing others to read client (I use client, not patient—medicine is a business. I am the client and the doctor is the contractor) experiences, along with the glowing advertisements by the makers of the device, and the one-sided studies done on the device.
    I am certainly going to try compression socks thigh high before trying anything else. It’s likely I will never give interstim a try after reading what so many of you have to say about it.

  • Had surgery in Jan 2016 as the implant had rotated. during the surgery, they stitched it in place so it wouldn’t rotate again. 6 weeks later, it had rotated again so got to have more surgery again. Surgeon said he has never had a patient where it’s rotated twice. It is causing so much pain around my buttock, all around my back and down my whole leg and into the foot, going to have to turn it off I think. Just can’t seem to set it on the right program where it doesn’t cause pain.

  • I have been dependent on a catheter since May of 2013 due to a botched hysterectomy. I use a catheter 4 to 5 times daily and sometimes once during the night. I have constant UTIs and am now taking Macrobid 100mg once daily. My doctor has suggested and is getting authorization for the Interstim. I am really confused as to whether or not I want to do this after reading all the reviews on leg pain and pain at the site of the implant. Is there anyone who has had a positive experience? If all antibiotics start failing I will have to have a port and go to the hospital for IV treatment which scares me to death. HELP

  • I have had the implant for almost a year its has been nothing but trouble did not work as i was told i have sever arm pain in my tendons mainly bicep and elbow but the worse thing is the fact that i get a huge shock right in my rectum as i pass threw the detoctors at any place that has them wal mart autozone etc it hurts any one else have the shock proublem even when it is turned off i get jolted

  • Turns out after almost 5 years of complications this device may have done more harm than good. It might have not been needed for my issues. Be sure you know exactly what you are getting into. They all make a lot of money off this. And they will try to keep it for 5 years because that is when it needs a new battery. Makes medtronic look better.

  • I am trying phase 1 and they are supposed to do the permanent implant at phase 2 in the morning. I am so worried. I am not seeing any improvement:(

  • I had the implant surgery in March and so far so good. I have had no issues with urge incontinence since the implant. I have MS and suffer from SEVERE neurologic pain in my right shoulder and arm. Nothing touched the pain other than large doses of prednisone. THEN I had the implant and for some amazing reason, which that doctors cannot explain, my pain went away. Crazy! The implant has been so worth it not only for the urge incontenence but moreso for the pain relief!

  • I am having surgery May 4th to replace the one I currently have as the battery is dying. However I have never had a problem with it. It changed my life here, the only problem I currently have is that it is starting to becoming irritating because the battery is so low now and not working properly. Hoping this will all change with the new implant. Other then that I found it truly an amazing device.

  • Worth the shot…. Second implant. At this point I think the thing is more of a fancy decoration than anything. My problem now is that it has been a year since my last interstim was placed, and the two little holes in the middle of my lower back are still itchy and purplish. A year later. It’s not dryness, it’s that itching of when it’s closing and it’s a little on the purple side which is a little alarming. I am over going to my old urologist, but after a year I am wondering if this is just me.

  • I am 8 weeks after surgery and my device hasnt worked since put in place, had an xray last week and the wire has bent and moved so having to go through the surgery again. Has anyone else had this problem? Apparently it is very unusual.

  • Just had my implant on 4/20/16 didn’t even need one pain pill, absolutely no pain at surgery site. I was really pleased with the trial, I have been severely incontinent for many years, have had to wear a pad 24/7 since 1977. I was becoming fecal incontinent too. Since day oneof trial I have not one incident of fecal leakage and my bladder incontinence is so much better it improved about 80℅, since the interstim implant I have been very close to bone dry! I am so happy.They the interstim has a 70% rate but I was blessed to find a wonderful Doctor who has an almost 90% success rate. If you are in Western Washington you might want to go her. My Drs name is Dr. Amy Arisco. I can highly recommend her, not only is she highly skilled she is a very warm and caring person. Dr. Arisco works out of Anacortes and Mount Vernon Washington. After I read all the horrible things that have happened to all of you I have to admit I am scared for the future, I have many people praying for me so hopefully I will be one of the lucky ones.

  • So I had my interstim battery moved due to a lot of pain a week ago. Well…I’m back laying in a hospital bed awaiting surgery to get rid of it! The pain dr seems likemy pain is nothing. This is mmiserable. Weirton Medical Center in West Virginia.

  • Hi everyone . I had my interim operation 6 days ago for relief of bladder problems for 14 Years. Hospital neglect . At moment my hospital surgeon n staff were great. My implant won’t get turned on till end may. I’m numb on left buttock n down my leg. Is this normal please. Thankyou

  • I have interstim on both sides, the surgery was in june 2014. the vaginal pain was intense for months, but did not know that they could cause this pain. The lead on the left side is frayed and the right side is in the wrong place therefore they both have to be replaced. I am frustrated.

  • I had the interstim operation in September of 2015 after having incontinence for a long time. It cost my insurance $20K and I want to warn all of you thinking of having this, unless you are in dire straights, do not do it. My Doc raved about it but after two weeks, I started having pains like aching, pins and needles and so I began to turn it down. I had a terrible time in the bucket seat of my car, I have horrible pains in my legs and I have finally just turned it off. I knew I wasn’t the only one after reading your comments and kick myself for letting the Urologist talk me into it. I went back to see him (Dr. Adams in St. George, Utah), and he got mad at me and said what do you want me do, you have the control of the settings and was mean and rude. My legs ache in the mornings, my back hurts, my toes curl, shoulder pain and yes, there should absolutely be a class action law suit against Medtronic and the Doctor’s who perform it. Most of them lied to us for money.

  • Got overactive bladder so bad was in hospital Xmas time could not stop peeing on tablets help a bit is this device any good for it

  • I have had my permanent interstim in for three weeks and all was good until yesterday when I bent over to pick up something and I felt a sharp pain. I checked the monitor to see if it was still working and the device was still pulsing. I have low back problems, so I thought maybe that was the problem, however, now I feel a shock when I rub my back and I continue to have low back pain. And voiding has changed … it is hard to tell when I need to void and I feel like I am retaining fluid. My questioms are: could the lead move and if so what’s to keep it from happening again if it is replaced and was I too active….did I cause it, and how long did any of you wait before resuming activities. I’m worried that they won’t replace it because I messed up. Has anyone else had this happen?

  • Jc
    I’ve just had my follow up apt 6wks after 2nd op (due to it flipping) and I in so much pain. Nurse pressed on my scar & said it was dissolvable anchor sutures. She asked my consultant & he said he wasn’t surprised as he had really anchored it in this time. Implant not working for me only one setting comes on out if the three I’ve been given & it’s not doing anything. Got to go back to nurse for reprogramming. Can’t believe it could be stitches with the awful pain I’m getting, but nurse said it can take upto 16weeks for dissolvable stitches to dissolve. Feel like I just want it taking out its so sore. Anyone else experienced this? Xx

  • When I first got the device, I thought it was wonderful, but that feeling didn’t last for long. It was not long after the device implanted that my incontinence returned I had the device implanted nearly three years ago and now I can’t wait to have it taken it out. I am in so much pain I can hardly make it through the day. The so called trial was absolutely excruciating to me, the needles the doctor used looked as if they were about four inches long. I just about couldn’t bear the pain from the trial surgery. The surgery to have the device implanted permanently was a breeze compared to the so called trial surgery. Also, I didn’t realize that the doctors get kickbacks for getting these things implanted in patients. Don’t know yet what kind of problems I may have from getting this thing removed from my body. I’d rather have incontinence than to have deal with this pain.

  • Omg i am so so mad since it’s been implanted into my hip it’s been nothing but problems my incontinence is better but there have been many many many problems and now it has flipped and moved… Trial worked Absolutely wonderfully but since it’s been implanted into my hip it’s been nothing but problems my incontinence is better but there have been many many many problems and now it has flipped and poking out of my hip very close it incision the pain is bad waiting to see dr and see what he wants to do this is horrible

  • I have the same problems as Jenn. Had my implant done in May of 2015 and it started going downhill in November of 2015. Leads have now migrated and pain and incision site is awful. Medtronic’s Rep who was at my implant surgery has stopped taking my calls as well as the Dr. This is absolutely insane.

  • Mine is always sore, 3 of the leads aren’t working they think they might be miss placed. Anyone have this?

  • The trial was brilliant, so I couldn’t wait to have the permanent one fitted. Had it done last May was disappointed it didn’t work that great but was advised needed to find the right programme, the battery came out of its pocket and I was in a lot of pain put on very strong painkillers. Surgeon said the battery in the wrong place was refitted with in a week. Since then have had 3 injections in the pocket for the pain, after the first one it was great for couple of weeks, in the end I had it off for 8weeks very careful with diet etc, I asked them about taking it out they said would need it switch off for a less 6wks, said I had off longer, but after 8 weeks after other injection again switching it off. Will really consider having it removed as it causes pain in the location place but not as much when switch on. Has anyone else had it removed. The

  • 2010 had a TIA which caused bowel leakage. Dr. promised the moon and stars with a 90% success rate. Had the implant surgery Jan of 2016. THE WORST DECISION OF MY LIFE. First of all, it was implanted on my right hip (the side I sleep on) mistake #1, Dr. never asked me, “what side do you sleep on”. continual low back pain started around week 3 after implant. This caused lack of sleep for SIX MONTHS. No, it did not do what was promised. Honestly, I feel like I was a clinical trail child. It has been six months of pure hell, no relief from low back pain even after Medtronic’s rep. agreed, we should just turn it off. Dr. finally agreed to remove it, which was done three days ago. I no longer have the back pain and would strongly recommend anyone wanting to do this, please, find other options first. Dr. did not even tell me there were other options. THINK TWICE, before taking this action. Believe me, it affected every aspect of my life and none for the better.

  • I’ve had the implant for about three years. At first I thought it was great which lasted about 6 months at every Dr. visit (about once a month) they adjusted the program and sent me off to “wait and see” until the next visit. It seemed to help especially at night but now I’m back to having to get up every hour on the hour either to go to the bathroom or to change the bed. I’m so discouraged and becoming angry—no one has mentioned removing it. I’m glad I found this site—I’m not alone with my Stimulator after all! Good luck to us all.

  • I went through the trial and it went really great. Then opted to have the interstim procedure done. Worked well for a short time but shortly after I started noticing that I was leaking again and right back to having to wear pads.
    Several trips to Dr. For adjustments would always seem to work for short time and then right back to leaking. So frustrating and crying cause all they would say is there is many programs that we can try but with no luck. With almost 5 yrs into this I finally have had enough I demanded that something more has to be done. So fortunately they did agree and put me on oral medication. The sad part is I shouldn’t have to take oral meds with the stim devise but for now that is what I have to do until I go in for my 5 year battery check up to see what we are going to do. Would I recommend the interstim to anyone,NO I wouldnt.

  • I’m on day 2 of 5 of the trial. Mine is for retention. So far I have seen no change. What setting did anyone else have it at? I have mine at 4 and can only really feel it when I turn my leg/foot outward. Thank you in advance!

  • I have had the Sacral Never Stimulator InterStim Device since 2004, Initially I had the trial which work very well. I had urine retention and I could hold up to 1300 mls in my bladder which caused my bladder to spasm and I could not pass the urine, it was agonising the pain was incredible. It was put down to never damage through spinal surgery. At this stage I was stimulating my sacral neve with a 9 volt stimulator and acupuncture needle every two weeks for at least an hour this went on for five years until I found a doctor that was willing to do it. I also self catheterised which was very unpleasant but at least it brought relief. The InterStim Device has brought me great relief my bladder functions well so I have been very happy with the result. I sleep on the side the implant is but do not seem to have any discomfort.

  • I had the implant less than 3 years. Worked great at first then I had to get the battery replaced due to high frequency use and a couple of falls which misplaced the leads (so they think). I had the battery replaced and leads adjusted in March 2016. The implant is too close to the surface (gross) and here I am 4 months out and peeing all over myself. I tried numerous prescriptions before the implant, but none were helpful with bladder spasms and wetting my clothes. At this time, I don’t leak, I pour…like turning on a faucet. I am really frustrated that I have spent thousands of dollars to try to maintain a normal life…and I definitely didn’t get what I paid for.

  • Hi im just wondering if anyone could help me my Dr in dublin is asking me to try the Sacral Nerve Stimulation but I don’t know much about it the website they gave me to have a look on just says great things about it obviously there going to say great things but I need to know if this truly works I’m a mum of 4 young children I need to be able to control my bladder better I suffer from OAB (over active blabber) any help would be great thanks

    If you had it done was it in Dublin???????

  • I had my bladder stimulater for 3 yrs!It sits right on my SI joint and the area burns and itches constantly ….I want it removed but live in a different city than I used too HELP HELP

  • Hi could someone help me I’m Dr has asked me to try the Sacral Nerve Stimulation but there isn’t much our there about it. I’m only 31 with four kids I need to know if it works or not I can’t afford to be out of action for too long, we’ll I’m question is have u had if done and if so how are you finding it..???

  • Since my Interstim was put in Jan 2016 I have suffered from horrible urinary retention and hesitancy. My bladder pain is HORRIFIC and worsened due to the retention- My low back pain has persisted as well. I am voiding much less now than I did but as all you IC patients know a full bladder with IC causes worse pain than an empty one. I’d go back to voiding more often just to rid myself of this pain causing issue any day. I just turned of the stimulator today, 8/7/16. Will update soon.

  • My name is Shane, I had the trial for 2 weeks which was absolutely brilliant I could void properly and the stream was really strong and all of my bladder was empty but most of all my bowels were working properly, I have now had the IMTERSTIM ICON implanted and I am on cloud nine it is absolutely amazing no pain.

    I feel a great weight has been lifted from my shoulders as I now can do a lot of things that I couldn’t do before like making LOVE to my partner because before I had this device every time that I had a erection the pain was so intense which became unbearable, also when I went to the toilet to void very little would come out I would go to the toilet at least 15 times every night and even more during the day, I was so restricted as it was so very hard for me to even go out as on many occasions I even wet my self which became so very embarrassing for me.

    I had no problems at all from the surgery as I had a General Anaesthetic on both occasions, from now on I can now move forward it is ABSOLUTELY AMAZING I would like to Thank everyone involved for everything that has been done to give me back my quality of life.

  • I am 58. My stimulator was implanted Sept-7-2012 due to Over Active Bladder. I guess I have been blessed because mine has worked fine. Then about 6mo ago I have started having symptoms of the OAB return. Well I knew we were moving so held out till we relocated. Finally got in to see a Urologist. Upon examination noticed a lot of tenderness on the right side of my bladder. My OAB had returned and no matter what settings I used no relief. The docter tried with his deviced and found one lead does not work at all and was unable to get anything programmed that worked. So went to have an Outpatient procedure done, Cycstoscope and Hydrodistention. Oh yeah! I also have Interstitial Cystitis. This was done to see if I had a bladder ulcer. Bladder looked good considering my IC. The doctor had a Medtronic Representative there to try and said she believed that the leads are functional but not working the way they should. I was asked if I ever had a bad fall and I did. I am a little petite woman and I did fall on my backside sometime back. Maybe a year. The fall was many of falls I have had. So my doctor said that after the procedure and recovery time we would talk. I go back on August 15th. Will update.

  • My trail was great! only have my InterStim Device place for 5 months. starting to not leak but pour out. also my bowels control are going.
    tried different setting with no luck. what can I do next?? This condition is a night mare!!!
    Has any one had the same problems?

  • I’ve had mine inserted in November of 2015 and six months later I started having pains, from mild but very severe now. My hip is always in pain and my bladder feels like it’s gonna burst, it pains a lot when I’m standing.

  • I had my interstim implant surgery in January 2016 for OAB. I sleep on the implant side with no problem. My device stops working and needs reprogramming approximately every 30-45 days, when I notice i’m back to frequent trips to the bathroom. My doctor prescribed an oral medicine for my OAB before the procedure, and I’m still taking it. The Interstim device has helped. I’m able to sleep uninterrupted for approx. 5 hours most nights. My doctor lead me to believe I wouldn’t need to continue the oral meds after my body adjusted to the device, but that has not happened. Not sure I would recommend the procedure to anyone.

  • i had the interstim stage one and 2 in june 2015, two months later sept.1,2015 the placemnt area came open,it was down hill every since. i hadfecal incontinence ( still do) ontop of that,i have sever ley pain in the back of my thigh and butt pain. the implant was removed two weeks ago and the pain is still the same. i absolutely dont know what to do,is it anything we can do legally

  • I had the implant done in the late Fall of 2015 for urges to pee often that made me very uncomfortable and my IBS. The doctor doesn’t call back when I call, the nurse has left the area but she couldn’t help me and I still have the same issues. What a disappointment!

  • I had this interstim device operation last November and I was disappointed from the start. First, the urology people at the VA hospital, in Phoenix, delayed my treatment for many months and then it was rushed ahead, without the steps of the temporary implanting of the lead to see how effective it was for me. The technician from Medtronic was very uncooperative and kept implying that I was having trouble with the device because I was too retarded to operate the programmer for it. Even after it turned itself off while he was trying to show me how to properly use it, he denied that it turned OFF by itself.
    Towards the end of January my symptoms seemed to be improved – maybe a 40% improvement. And after that it was all downhill. Symptoms got worse and a second technician from Medtronic showed me that her computer showed that the Device had been turned OFF for over a month – while that other technician was refusing to meet me at the urologist’s office to make adjustments – and contrary to what that technician had told me, definitely – that this thing NEVER TURNS OFF, unless I turn it off with the Programmer.
    The technicians clearly are dishonest and incompetent. The device is a scam.
    There is a website for a lawsuit against this company, which I have lost, but I will look for it again.

  • I had an implant early 2014. I am now starting to have problems. Only one lead is working. I have no insurance and cannot get an adjustment or a Dr. I have moved since my surgery and a doctor that knows about the interstitim is 2 hours away.
    I have been very happy. Yes, I have experienced light pain, which is nothing to constant incontinence.
    I have never been able to go swimming because it somehow causes it to go into shock or something.
    If you plan to have this done, I hope you are near a medical university such as Vanderbilt. A University is where you can find a doctor that is educated on the device.
    I am disappointed with Medtronic for not offering assistance for someone who has lost or changed insurance and can’t afford a doctor. Also there is nowhere on their site to locate a doctor and Medtronic does not respond to emails. I guess I am 90% happy with my decision to have it done

  • I am at six weeks post op with my stimulator. I had it placed for retention and it’s working great but have to switch back and forth between settings. Trial worked great but was horribly painful. I’m starting to have pain at the site but not sure why. Inscision is all healed up. I do have leaking but had it before the surgery. Just grateful I am no longer in pain from retention and not having to Cath numerous times a day. Hope it continues and pain doesnt get worse.

  • I have been reading all these comments and now im scared im having a interstim implant on September 13 the trial one didnt go good. I have scoliosis and arthritis in my lower back and those needles irritated and agitated my lower back i was in so much pain the gabapentin and naproxin didnt help . I have so many other ailments im disabled. Why doesn’t somebody sue this company

  • So very sorry to hear most of the comments are of frustration, pain and unsatisfied patients.
    I had my implant done in Feb 2009 and am going in for my first battery replacement this coming Thursday.
    Before my implant I had to self cath 10 times a day for almost ten years.
    The reason for my implant was nerve damage due to many surgeries due to infertility.
    From the comments, it seems that the patients that couldn’t urinate without cathing have more success with the interstim than the patients with leakage issues.
    Its very important to know how to use the device so that you can regulate the stimulator yourself.
    At first the vibrations were painful but after a few weeks I didnt even feel it anymore. Once in awhile if I cross my legs or sit a certain way I am quite uncomfortable but I just switch my position and I am fine.
    The interstim, for me, has been wonderful. Not having to cath is awesome.
    I am so very sad for all of you that are having pain and discomfort so much so that you want it removed!
    I chose to have mine implanted in my buttocks and I am happy with that decision as well. I am slender so sometimes it is noticeable through clothing…but no one should be looking at my buttocks anyways! LOL
    And, I am fortunate to have a wonderful doctor and fantastic Medtronics rep.
    Good luck to all and feel free to contact me via my email if you need a quick lesson on how to manipulate the leads yourself.
    Knowledge is everything!

  • Was on this site May 2016, had my battery relocated after it had pop out of the pockets, several injections into the pocket to stop pain, so have decided to have it removed as the pain is stopping me from doing everyday activities. have tried strong painkiller but don’t really suit, side effects awful and I rather not take them. The consultants having a meeting on Monday to decided on next step for me.

  • I’ve had intrastim implanted over 2 yrs and so far I had no improvements…trial did not go very well, but I did see slight improvement, so I’ve decided to have it implanted permanently…Doctor tried and tried to make many adjustments, but none worked…..I started to have pain in the implanted area and all of a sudden, my hip/leg started to hurt…I limp when I walk and can not sleep on the side of the implant…..had the unit turned off for few months now, but the pain is not going away…..have surgery scheduled to remove that darned thing….STAY AWAY from it, do not have it implanted!

  • I started trial yesterday. I keep changing the settings to higher levels since I
    don’t feel much of the pulsing. After reading all the problems listed, I am having
    second and third thoughts about it. Is 24 hours too soon to see a difference? The
    device is only good for ‘up to’ 5 years maybe less. Is that a consideration for decision
    also?

  • I started trial yesterday. I keep changing the settings to higher levels since I
    don’t feel much of the pulsing. After reading all the problems listed, I am having
    second and third thoughts about it. Is 24 hours too soon to see a difference? The
    device is only good for ‘up to’ 5 years maybe less. Is that a consideration for decision
    also?

  • I had the permanent implant surgery in Feb., 2016 as a last resort to bowel incontinence . I cannot complain thus far, however, I’m curious if anyone else has had the following issue. Right after my surgery and to this day I’m having serious issues with my stomach bloating to an enormous size regardless if I’ve ate a thing and breathlessness. Some days are worse than others. But, it has been everyday since the implantation. Could my body be rejecting it?

  • I had the interim 3037 put in back in August. The trial was fabulous so I figured I would get the same result with the “real deal”. Long story short it never worked and 8 months into it I was told the lead was broken. So in April I had a new 3037 “installed” and the lead on this one broke in August. Like many, my hip kills me most of the time and it consequently causes a lot of lower back pain. The unit moves quite freely so if I move the wrong way it will get sort of lodged until I move in such a way that it releases. It grosses me out for sure. So I guess chalk me up as another dissatisfied customer. I’m sorry most everyone here has had such a rate of failure. I just keep ordering bundles of the ultimate supreme pads in addition to keeping my dry cleaner in business. (probably TMI). 🙂

  • Have had implant now for over 5 years..Doc who did the procedure no longer does it, which I find quite convenient. I’ve had nothing but health issues and am now noticing things r getting worse. Horrible lower back pain, kidney stones, bladder is not emptying, more frequent headaches. I have scheduled an appointment to have it removed. As previously stated by others, I’d rather wear pads than wear this device. Also this device prevents an MRI from being done to check my kidneys and lower back. Definitely wished I would have stuck with my original decision NOT to have this outrageously expensive device inserted.

  • I have been getting Botox injections every six months for about five years. The effect is wearing off faster and the surgery needs to be done in less than the six months. The implant is the only other option that’s been offered. I am unhappy about the problems I see you all are having. Now having second thoughts. Had Botox two days ago having muscle spasms and scheduled to do the trial implant in Jan 2017. Second thoughts but what else is there? Afraid of being put to sleep so many times.

  • I have been getting Botox shots for the last 6 years for frequency and leakage. The shots use to work for a year but now its down to 6 months. My urologist is recommending the intersim along with Botox. Is anyone getting Botox shots and use the interstim implant?

  • I have had my device since August of 2010 and have had to have my battery replaced (because it ran down) once). Mine is for OAB and is wonderful. Before it I could not get out of chair, hiccup, sneeze, laugh or anything else without peeing down both legs. Now I can jump rope with my grand-daughter, or anything else I decide to do. Mine has to be re-adjusted every so often. That is no big deal. I just use the hand-held programmer and reset it. I have never had any trouble with it and have recommended it to others who have also had it done with no problems. It sure beats having to wear a diaper. I call it “Grandma’s bionic bladder” and yes, I would and have recommended it to others.

  • I had the inter stem system trial put in and it did not work for me at all. I was in pain all of the time. I was in pain to walk , sit , lay in bed , sleep ! At night I felt the wires sticking me all night long and very hard to sleep with this all night long. I still went to the bathroom all of the time and got no help at all from it ! The wires were removed a week later. I had no luck trying inter stem system for peeing to much at all.
    Anyone thinking of doing it should just know it does not work for everyone and you will only know if it will work for you by giving it a try. Also know it is not a bowl of cherries to try it. There is some pain that goes along with it .

  • I noticed reading the other comments that the trial phase worked very well for many. I was delighted with my trial phase contolling my IBS symptoms, little to no leakage at all. I couldn’t wait for the 2nd phase. It didn’t work half as well. I’ve changed the settings, waited 1-2 weeks to give it time to see results (as suggested) many times. Now, 9 months later, my leakage is even worse and I have nagging discomfort at the implant site and I’m almost crippled with chronic constipation. I really feel the interstim is causing this problem too. I’m frustrated and disappointed.

  • I noticed reading the other comments that the trial phase worked very well for many. I was delighted with my trial phase contolling my OAB symptoms, little to no leakage at all. I couldn’t wait for the 2nd phase. It didn’t work half as well. I’ve changed the settings, waited 1-2 weeks to give it time to see results (as suggested) many times. Now, 9 months later, my leakage is even worse and I have nagging discomfort at the implant site and I’m almost crippled with chronic constipation. I really feel the interstim is causing this problem too. I’m frustrated and disappointed.

  • I have had my stimulator for 3 years, and I love it!! My Dr., Dr. Seigel from Minneapolis and a world known urologist helped me with mine. I’ve had no problems at all, until a recent fall. And now I have to have mine replaced. A little scared due to the fact I am having someone that I have not been to very often do the surgery. I think it depends on the Dr. that you have do your surgery. Also you still need to watch what you eat and drink. This is not a replacement for watching those things. It will still affect the way the stimulator works.

  • I had very bad prostate cancer 6 Gleason cores 9,5 at8 1 at 7 all 50 persent or more,had cyroblast treatment. Turp,bladder neck opened up,now on two years of Lupron,went on the verify interstem therapy Wendsday,keep adjusting setting up, no relief so far,on it cause I pee 35 times a day,7 times a night.i have 475 ml retained fluid,what is Next?

  • I had my trail in 2012, in my Doctors office , I’ve had a spinal fusion and tried to tell my doctor at that time with so much scar tissue and hardware in my back it should be done under sedation, he said no big deal , it will only take a half hour , well it took 90’minutes and I was in so much pain I was crying and he had sweat rolling off him , but like others trail was good , my bladder was damaged from a surgery , well everything for the most part was going well until about 3 months ago , I’ve always gotten frequent UTI since I’ve had , doctor said not because of impact , yeah right but I thought well I can live with those , now I’ve had a UTI for 3 straight months , bladder spasms that make me cry , sometimes when I urinate I want to scream , urologist is saying oh no not the implant , but they can stop working, well I must have not gotten that memo , none of the meds work for me and my sister is an NP and isn’t really wanting me to do the Botox , I may have no choice , I just finished my 3RD antibiotic 2 days ago , now my urologist wants to do testing on my bladder , I’m so very sorry for all of you having issues , I feel your pain , we need to start a class action suit , I’m on Facebook, maybe we should start a group on there , praying for all

  • I just posted , if any wants to message me on Facebook, forgot to put my last name , on my profile, I’m holding my granddaughter and have blond hair , I’ll be happy to start a group for us , so we can keep in touch and update each other

  • I got my interstim in February and have had pain in my hip at the location of the implant ever since the surgery. No problems with the leads, etc. I did develop severe tendonitis in my Achilles on the same side as the implant. I cannot exercise sit, stretch, do yoga or anything without pain in my hip radiating from the implant site.
    DO NOT GET THE IMPLANT. JUST DON’T.

  • I had my interstim trial in the spring. It worked great. So I had the interstim implanted in June. It worked great for two or three days. Now comma it’s like it’s not even in there. I am so disappointed. I’m not having pain like some of the others I’ve read about, but I’m definitely not getting the results that are desired.

  • Jeez im so glad im not alone im trial went great then i got the interstem implanted in july of this year and i have had no relief im still having to pee just as much still leaking and now having alot of pain and it feels like the implant has moved grrr i just want to have a normal life im only 33 and have always been like this never been able to go on a long road trip lol or anywhere unless there were bathrooms and this pain is unbearable

  • I am 2 weeks away from Phase 1, and after reading some of these comments am very nervous. I am getting mine for urinary retention, due to damage to my bladder after being t-boned by a semi (praise Jesus I am alive) I have had to self cath for the last 4 months, and just am at my wits end and can’t keep doing this. I have HORRIBLE bladder spasms, sex is super painful, long car rides, sitting too long, on and on.. I was also diagnosed with IC at the same time. Prior to this accident I was a runner (approx 30 miles a week) as well as doing Crossfit, and yoga. Working out was my thing! Now I have had to modify for leaking, (along with a back injury) I cant run, it causes horrible spasms.. I feel like at 38 I am an OLD LADY!!!! I am afraid this will not help me, and maybe make things worse. My Dr. is a very good Urologist, I completely trust him, and he believes this is the best solution. Advice?????? I am also the Mom of 3 VERY active kids. My life doesn’t stop for me to be in pain and deal with it – – so I have just gotten used to hurting all the time and living on Valium and pain meds.

  • Thank you to all who have commented here about their experience. I am currently 3 weeks into the interstim trial and if anything my symptoms seem just as bad if not worse. I am holding out all hope that something changes but it is reassuring that after being told it is 83% successful that i am not alone in it being unsuccesful (so far) – there is very little support given for the trial period in the uk and you have to hope that the setting you use is right! Even though there seems to be no right or wrong setting as all different. I am told there are other settings on the permanent one (through others not clinicians) but why they are not available through the trial i will never know – how do you know if other settings will work. It does seem it is more succesful for those with retention issues than us with OAB issues – what a disappointment 🙁

  • I had the interstem for 3 years and still had to go just as much as before then the 10 leads broke so I had to have it taken out and now I’m back to the same thing if anyone has any other ideas please let me know.

  • Why can I only see the last tword comments?
    My IS has been in for 5 years for fecal incontinence and bowel pain.
    I am not having much luck. The first two years I seen improvement.
    Now it just adds pain and if on wrong program causes urinary incontinence too.
    I have had pain from groin/buttock region to toe. Prickly needles in calf and ride side of abdomen.
    Anyone else feel this?

  • I am 59, and have used a wheelchair for 44 years as a result of Charcot-Marie-Tooth disease. I always had excellent letter control, but then about 15 years ago my CMT started getting worse, and urgency to go, and leakage started taking over my life. My urologist recommended the inter-stim. He said that they have had great success with this implant. I have had it for 8 years. I have had the battery replaced once. Every year when I go in for my checkup, I tell my doctor that I notice no difference whatsoever. I tell him that I often have intense pain where my scar is, and I feel pins and needles. He assures me that I should not be feeling any of those side effects. He concludes the visit by saying he’s going to send in his physician assistant to adjust the setting on the device. She comes into the room, pushes some buttons on her little handheld computer, and says that everything is working fine. I tell her no, it’s not working. I asked her what exactly is this thing supposed to do? She tells me it should stop the sensation of any urgency I feel. I respond by telling her at each visit, and that may be true in theory, but the reality of the matter is, this thing is absolutely useless.

  • I had many bladder issues until I started putting young living lemon oil in my water and taking magnesium vitamins and probiotics. It was 3 yrs until I had a first feeling of a bladder issue. Treated it with oregano oil and it went away at day 1. I was on bactrim for yrs. Hated living on meds and always in pain.

  • I’m posting this based on my wife’s experience with the Interstim 3037. If I could give the device and the surgeon a negative star review, I definitely would. My wife had the device for about a year when she was suddenly feeling a sharp, debilitating pain shooting down the same leg as the device was on. After consulting with the physician and having X-rays, his conclusion was that she must have injured her self. Complete garbage. I was there when this first started and there was no injury. The surgeon is admit that it cannot be the device. We contacted the rep who said that because my wife is thin, that the device might be to close to the surface but that doesn’t explain why it took a year. My wife decided to turn the device off for about 2 days which caused a reduction in pain by about 90%. After informing the surgeon of this his response is that it still can’t be the device but must be an injury. She is scheduled to have the device permanently removed tomorrow.

  • I had radiation & memo in 2010 . Developed anal stenosis late 2011 . My GI sent me for a
    “bioptsy”. I also had anal stenosis which I knew nothing about at the time . I went to a well known rectal surgeon who told me he was going to take a larger bioptsy . When I was in the recovery room the surgeon came in and said to take the bandage off the next day and pull out the gauze. The next morning I took off the bandage and discovered that I had a dime size hole
    where my anus was. From that moment on I had total incontinence. For 6 months the surgeon
    Only told me to do the squeeze exercises. Finally I said what in the H___ did you do to me?
    His reply was to calm down and how would I like a vacation. Vacation , I need to be within 30
    seconds of a bathroom . I left and never went back . MRI after MRI every dr. hid the truth.
    Finally after months of demanding an MRI showed a Transverse tear in my EAS , a stretched IAS , and a lax levator . The damage was from 5:00 to 9:00 the tear from 6:00 to 7:00 plus.
    At this time I went to another well known rectal surgeon , unfortunately who knew the first.
    After giving me a rectal ultrasound , which I could not see due to the “angel” of the scanner
    the surgeon threw the probe sheith across the room . The colonoscopy that followed they
    put me out when I told them I wanted to see as I have done before . In the recovery room the doctor said I should see a colleague of his about a bowel stimulator knowing I would not have a colostomy. The following week I saw her and discussed the matter. Two weeks later I had the
    temporary put in , telling her to place it below my belt line because of the physiology
    between men and women. 3 days of agony ! The next two weeks with the device on 24/7
    as she instructed made no difference. The time came for my decision , if I wanted the
    permanent implant . It took me 2hr.s in pre-op to decide . I decided I had nothing to loose
    except 3 more days of pain. The implant was programmed and the doctor said to keep the stimulator on 24/7 again , even though the manual said to turn it on when needed. Even the
    Medtronic rep said to do so 24/7 . Well I called Medtronic and they said no only when
    needed , that keeping it on 24/7 would really shorten the battery life. So I took their advice.
    Little good . It never worked . 8 months later after shocking me out of bed 3:00am the device
    gave me extreme pain when walkin . The dr. Left it in for 1month until I demanded it come out.
    I could not walk more than 75 ft. before the pain got so bad. All said and done I now have permanent buttock pain when I walk . That doctor never told me that this could be a side effect. Only after I had the damage did she tell me. _____! They also never told me that if one
    has had pelvic radiation for cancer you can’t qualify . Nor can you qualify if your sphincter
    or sphincter complex is 60 degrees or greater in damage . Just love doctors who cover
    each other’s A___’s at the expense of their patents. BE VERY MINDFUL and knowledgeable
    before making this type of decision . Look into bulking agents even a carefully placed
    anastomoses done through the rectum using bioabsorbable stappels !!!
    ,
    T

  • The InterStim did seem to help the urge incontinence but I was still leaking a lot. So I went back to my original arsenal, which included a super tampon and a super pad. Leaking still a problem. So I had to resort to putting the pessary I had back in, and that seemed to do the trick. Things are not perfect but they are very much improved. I can go hiking for long stretches at a time, which is nice. I also do 100 jumping jacks every morning with no problems. But, again, until I put the pessary back in, I didn’t feel I could give InterStim a good grade. Do check with your doc about getting a pessary. It has made an important difference. Yes, it’s disheartening to know I have to use the full arsenal, but at least it works.

  • I am so sad to see all of the negative remarks on this site. Having my inter stem implant has changed to life as well as the lives of my family. I was basically homebound until I had this procedure done.
    I want to say I do have an excellent doctor. Maybe that makes the difference. I have had my implant for three years and it is still working the same as the first day it was implanted.
    I have no muscle in my rectum due to damage during childbirth. Imagine no control. I couldn’t be out in public, or even outside of the house without having an accident. Can you imagine having 12 to 15 bowel movements in a day?
    I am sorry this has not worked for so many of you. Perhaps is wasn’t implanted properly.
    Praying you all find something to help your problems

  • In reply to Roselaine;
    There are two types of urinary incontinence. Stress incontinence, which is helped by pessary, tampon, sling surgery, etc, and urge incontinence, which can be helped by interstim, medication, Botox, etc. Unfortunately many women have both types and require dual treatments. It’s must unfortunate your physician did not take the time to explain this.

  • I had Interstim 3037 put in on Jan. 24, 2017 and immediately had a problem with shooting pains down my leg to my toes, didn’t have those symptoms with the ‘trial device’ and just like the story Troy shared about his wife, I was told EXACTLY the same story, I was accused of twisting or doing something wrong that caused this problem. The doctor and Rep acted like I was ‘making up stories’ and said they had NEVER seen this happen before. I was FURIOUS because no one was listening and when I shared like I felt like I was dropped off the face of the earth when no one would follow up immediately after my surgery to discuss my concerns. with these shooting pains, I was bounced b/n being told to call my doctor, then they tried to get answers from the Rep. and then once they tried EVERY setting , they said ‘something’ with the wires went wrong so would have to have a 3rd surgery to reposition the wires. Well today, March 14 I had that 3rd surgery, they tried to reposition the wires, there was an ‘attitide’ in the operating room like I was a ‘problem’, tried telling me they couldn’t sedate me, so it was torture as they tried to try to reprobe and reprobe and after about 30 minutes of pain and torture, they told me the device wasn’t going to work for me and would have to take it completely out, THEN they sedated me to take the device out. I was soooooooooooooooooo angry that $100,00 later, I am left with no hope and then told to be strong, don’t give up hope and we can NOW try some other ‘nerve therapy’. I can not begin to tell you how badly I was treated because I was ‘labeled’ as the problem instead of the device. I will be looking into getting info. from Medtronic of ACTUAL experiences like this because being ‘scapegoated that I was the problem’ is NOT okay, when it seems like the ‘device’ is the problem and being treated less than human influenced the care I received, from the anesthesiolgist, nurses, doctor and surrounding staff. I am PISSED!!

  • I have had the evaluation device for a week. I’ve noticed some relief. I have both urine and fecal incontinence. After reading the reports, I’m concerned about getting the permanent device implanted. I have unresolved neuro-muscular issues and have had my share of obnoxious and arrogant doctors so I can relate to some of the recent comments. Thanks Rebecca and Linda for sharing at least 1 successful case and information concerning incontinence. Are there any others who have found at least some continued relief?

  • Thank you for your reviews. My GYN doctor recommended this interstim for urinary incontinence and referred me to a colleague of his. Don’t think I even want to try this as I have enough problems as it is. God bless you all.

  • I was very nervous about having the stimulator implanted after reading all the negative comments but I am truly thankful that I did. I have Crohn’s disease and bowel incontinence. Before my implant I was having to wear depends 24/7 and had accidents 15-18 on average everyday. It was hard to leave the house and even sleeping was upsetting knowing I’d wake up to find a mess. During the first week of the trial, I noticed no difference however the next week it helped. Amazing! My first yr with the implant has been a gift. I still have accidents which is frustrating but there is hope because it’s cut in half. I do have tingling in my toes and keep my level low or its painful in the nerve. But both my Dr and rep were very clear-it should not hurt. If there is any pain turn it down or turn it off for the night. The dr did say some people are more sensitive and nerves can be tricky but to call right away and they will help fine tune as needed. I hope it continues to work but even if it stops working I am still thankful to have the relief I have experienced so far.

  • My background: I have urinary and fecal incontinence. Many accidents per day.

    I am in day 4 of Stage I Medtronic Interstim therapy. I had instant results, not one accident since implanted. It was so wonderful I had doubts that it could possibly respond so quickly. I am on 2.2 setting. I can feel the stimulator when I sit a certain way, but no pain just a mild vibration, but goes away. Some pain after surgery but not scruciating and the pain meds took the edge off. I know its early in the process, but I already have freedom from the bathroom, before you leave to go somewhere, to using it every place I go, I went shopping just walking around I DID NOT use one bathroom, no accidents and I was out for 5 hours, that never never happens. I am thankful, happy and hopeful. I know my process is in the early stage so I appreciate everyone’s stories.

  • I have spoken with my doctor and I was going to use the InterStim device. But after reading the comments and pros and cons of this device, I don’t know if I should go forward with this procedure or not. It’s very confusing. I have never lived with the pain I am reading about and I certainly don’t want to.

  • My mother is considering the interstim device. We believe her loss of bladder control is due to a neurogenic bladder caused by ruptured discs in her lower back. Has anyone had this device implanted who has back problems and what was your results?

  • I have had an interstim for almost two years for urinary incontinence. At first it worked as advertised. Then for about 14 months it started being flaky. I realized that if I was really anxious it did not work. I started wearing pads at night then added to daytime just in case.
    Four days ago I had knee replacement surgery on my left knee. That went really well but after 24 hours my one pad a day did not last. While in the hospital, where I am currently, I have to pee ever few minutes, when I drink or eat anything, I get a tiny chill, the bed vibrates,

    ANY THING! I’ve turned the device higher and off. Nothing stops the sudden urge to pee.
    What can I do!

  • I have had my intersim in since 13th january 2017 and it has changed my life completely as I’m only 20 years of age and I’ve had bladder problems from a young age so it has gave me a new lease of life. Although I would still have leakage but I don’t have the urge to go as much or I don’t go frequently. And the shooting pains I get down my right leg is unbearable at times it’s almost like a massive cramp and my toes spasm and I have to stop what I’m doing, it’s a horrible feeling. Also the area of my scar is on the top of my right butt cheek and it’s very painful to touch I don’t think that is normal. I’ve got into contact with my surgeon and hoping that something can be done I wouldn’t want it removed but maybe the wires could be in the wrong place but I’m hoping for the best 🙂

  • Does anyone know why the implant comes out of the pocket?
    I had the interstim implanted Mar 2016, then Nov 2016 I had the revision surgery to make the pocket deeper. Ok here it is April 2017 it has came back out of the pocket.
    It works fantastic for me. I go back to my Dr in June. He told me when he done the revision if it comes out of the pocket again ‘ put up with or he could take it out” I have a good quality of life since the interstim it’s just very uncomfortable for me to sit and I cannot lay on my back. I don’t know what to do

  • Kim Ellis
    I am 50 years old and had the Medtronic Interstium Bladder device permanently implanted in May 2014. In May 2015, the lead moved from sacral foreman to a bundle of nerve conductors (nerves that were not meant to be shocked, damaging them to the point of non-repair) and was SHOCKING me so severely that I was hospitalized and had no feeling from the waist down. I could not feel my legs (thought I would be permanently paralyzed), I could not walk and I could not make water (had to be Catheterized). I truly was CLOSE TO DEATH BY INTERNAL ELECTROCUTION. By the time we were able to get the device off, I could not feel anything from my waist down, and I could not talk or process any information. I had to wait about 10 days to get the (now lightly shocking) device removed. The Emergency Room Doctor nor the Neurologist knew nothing about the device and I had to wait until my Gynecologist who installed the device, could schedule me to have it removed. Upon seeing me for a consultation before the surgery he called a Medtronic’s representative (Matt) who tried to reprogram the device, wherein I was shocked again and was told that it was a general consensus that I have the device removed. A couple days later when I was taken to the surgery waiting room, the Medtronic rep (Matt) was waiting for me and tried again with no success to reprogram the device before I had time to even talk to my gynecologist. Matt also attended in the surgery to remove the device (these two events are included in the medical evidence. My gynecologist said that the lead was displaced and used fluoroscopic photographs that showed abnormal distal positioning. He said the lead had tips that were bent backwards and the tines did not deploy to hold the lead in place. The lead (should be downward pointing and adhered to tissue to assist it to stay in place. But instead it was embedded in a nearby nerve bundle. He also said that the electrode lead had a fair amount of redundant mobilization, MOBILZATION – MOVING AROUND IN MY BODY. This device had been in place for 1 year before this happened which indicates that something that was supposed to hold it in place failed to do so because of the movement that was evident (picture of wire under skin on back included) THIS HAS BEEN THE WORST 2 YEARS OF MY LIFE. I have been confined to mostly my bed since April 2015, I have had severe leg pain, cooling and heating sensations, problems processing information (mentally) tingling sensations in my vagina area, problems emptying my bladder, and severe hip and back pain ( I have gone days without any sleep because of the overstimulation) and weeks with very little rest. I have no normal life functions, I cannot go to a store to shop, cook dinner or even go to a medical appointment without a great amount of pain and days in bed recovering. I have to use a walker to walk to be mobile. I cannot attend any events that my 16 year old son participates in, I cannot even attend a movie because of the pain of walking into the theater and the pain of setting through the movie. This is a very, very slow and painful process for the nerve to grow back, if they do at all and it is even a slower process to get diagnosed with nerve pain, it takes months to see a Doctor and then to get additional tests only to be referred to another Doctor, to date I have saw over 19 Doctors, 9 hospitals, had 4 CT Scans, 5 MRI’s, 2 nerve conduction tests, a SI joint injection, 4 nerve blocks and cryoblation of the Pudendal nerve (which is permanent). (Pudendal nerve damage diagnosed by Vanderbilt Medical 28 Dec 2016). All of this and still no relief from constant pain, I still have other nerve damage caused by the device which we are currently dealing with at Vanderbilt Medical. My recovery could take an additional number of years. The sensations I have now are new nerve cells growing and awakening. Success for me now is making water and walking… when this all began I was the president of a non-profit organization and have had to put the organization on hold until my health gets better, but have been told that it could take years or I may never recover, so I may never get my life back. I currently have taking the following medicines for relief from the Pain, Hydrocodone, Oxycodone, OxyContin, Lyrica, and Cymbalta. Morphine and Fentanyl all with very little relief from the pain. I have taken narcotics and opiates for 2 years to help control the pain and am still in tremendous pain and will eventually have to deal with addiction before I ever return to a normal life.

    Kimberly Ellis

  • I’m scheduled for permanent implant the 17th of may. All of these negative comments are scaring me to death …I have both fecal and bladder incontinence from pelvic floor damage in chilbirth . wow I don’t know what to think

  • I have had the perm implant since march and it had worked great!… however the last few weeks I have been experiencing lower back pain and also pain in my hips especially when I’m lying down does anyone think my implant is replated to the pain

  • I have had the interstim implant for OAB for over 6 years. I just had the battery changed. It is between 80 and 100% effective. Immediately after the implant I was able to stop using pads. I had not been taking OAB meds for quite a while because they never worked more than a few days. Prior to getting the interstim I had urge incontinence almost every day and now I don’t. I still have some frequency at times but I can get to the bathroom on time.
    I don’t really notice it all the time. Sometimes I can feel the stimulation. I can feel the battery under my skin. That was hard to get used to at first.
    I’ve had a lot of benefit and few side effects with the interstim.

  • I am 1 week post permanent implant for fecal and urinary incontinence. I went from 4-5 pads a day to a trace amount every other day or two. My surgeon said he could tweak the settings at my post op apt. My days no longer revolve around the bathroom and I go the whole night without getting up to go to the bathroom.

    I think the key is finding an experienced surgeon. Mine has done several hundred of these and came highly recommended. He said he has never had a problem with leads misplacing.

  • Going to have my surgery on the 11th and reading the comments really SCARE ME,,All I can
    please CROSS your fingers.

  • I have the interslim at first I was very optimistic however I cant really increase it unless I never want to go to Wal-Mart to shop I get shocked every time I walk in it has caused anxiety when it comes to shopping

  • I’ve had my interstim implant for 31/2 years for fecal incontinence caused from childbirth. In the past month I’ve been experiencing back pain at the sight of implant that radiates down my leg. I tried reducing the setting to turning it completely off. Still having pain. Has anyone else had this problem and if so what was the outcome. Having to wait two weeks to see my dr.

  • i am in the trial stage for urinary incontinence and i see 100 % IMPROVEMENT But with that said i am having a problem with severe neck pain and headaches any time i am in an upright position for short periods of time anyone else have these ptob;ems?

  • I have had my implant since 2012 and it has been a life saver! Had the battery replaced once after 8 years. I was in dire need since I could barely make it out of the house due to urgency. However, recently I have had back pain and pain shooting down my leg, not sure yet if it is the implant or if it is a back issue. But I have had many years of good luck with the device and would recommend it highly.

  • I had my interstim placed about a year ago. 1st one implanted on the Left side, i could only feel it down my left leg, back to surgery with a new placed on the Right side, could only feel it in my right groin area, also infected. I finally went to a new urologist who then put a new one in my left side with thoughts of repositioning the R side, but alas the R side, altho implanted was sitting in a pool of infection in my back, he removed it. Few months later my hip hurt, a lot. i went to an orthopedic guy, he gave me CT scan, hip fine. Injections into my hip, no help, then he gave me a cane and said arthritis. The pain increased, my whole leg now. Left side. I cant walk, shop, clean, nothing. I’m a strong woman, stage 4 cancer, never missed a day of work with radiation, chemo. 2nd opinion at orthopedic office, xrays, ct scans, hip fine, the pain in my leg freaking incredible. i sit. I cant grocery shop, cook, walk, nothing.
    i am scheduled to have my interstim out this month. No one will say if the interstim has anything to do with it. Cant find info anywhere. i know i cant be the only one.

  • I had the interstim placed a little over a year ago for fecal incontinence and had almost immediate relief. I had spent over a year fighting with changing pads seven to eight times a day and living in fear of never knowing when I could have an ‘accident’ while out in public. I had no sphincter sensation at all so I was always paranoid around people, never knowing when I would experience another ‘surprise’. I was having to run to the bathroom every hour or so just to ‘check’. Not leakage, just complete bowel movements. In short, life was miserable. Now, after a year, I am once more free to go shopping without fear. Or even just visiting friends. This was a godsend for me and I am sorry to read about so many people having problems. I do have a doctor who was willing to sit down with me to experiment with the different settings and explain that there are four different leads leading to different nerves for different results. I do have some tenderness at the implant site, but when I think back at how my life used to be I find it acceptable. I hope I can shed a little positive light on a miserable problem.

  • My previous comment was cut short. But nonetheless, Even though i recently had a SI joint Fusion on my right side My Obgyn assured me that the interstim would have no effect with the titanium pen that was on my right side. It has been a week since I’ve had the trial installed. I went back to my doctor on the 12th of June and he readjusted the settings and change the megahertz because I told him I was experiencing pain and tingling down my left leg to my big toe. I was also experiencing extreme pain in my buttocks, bicycle area as they say at medtronics and my vaginal area. After adjusting the settings he had a medtronics representative to call me and they both agree that I should try it 24 hours and call them back the next day. I turn the stimulator completely off because I was in pain. On top of that I have a severe allergic reaction to the bandages that were stuck on my incision . So I am dealing with a rash from the bandages. Notwithstanding the threads where the battery is located seems to be coming out of my skin and is very painful and bleeding. The only relief only relief that I have gotten is when it is not on. Although it has stopped me from going to the bathroom, which I really appreciate, but the pain that it causes is almost unbearable. I go back on the 20th of June for the permanent placement I will inform my doctor that this is definitely not for me. I was taking a medicine called Mybetriq which was working very well but but my insurance will not pay for it. I encouragedmy doctor to send in a pre-authorization to see if they will pay for it because I have tried all of the medications. But he informed me that the insurance company still may not pay for it but I am going to push this issue. I was so so hoping that this would me but it has only caused me more pain it is hard to walk and stand for long four periods of time and even sitting has become unbearable and the site of my incisions are painful. I have had 3 surgeries within the past year and this one by far has been the most painful but less evasive. To the people who have had this and are having symptoms such as tingling burning and not being able to walk and having lower back pain I totally agree with you and I have only had this thing for two weeks. It is NOT us it is the DEVICE and it does not work for every one. I am happy that it has work for others but as for me I am getting it out as soon as possible. Thanks for sharing everyone.

  • I had the trial placed on March 6. I was awake the entire time and crying and screaming in pain. He never once stopped. I wore the trial for 5 days. During that time all the following happened: My bowels shut down, no movements for 5 days. My leaks stopped but then I had trouble completely emptying my bladder. I also had muscle cramps on the corresponding side of the lead that was on. The day I went in to get it taken out the doctor barely talked to me and wanted to schedule the procedure for the permanent one. I said no.

    I have planned an appointment with another doctor to get a 2nd opinion.

  • I had the Interstim implanted a few weeks ago and after some initial pain at the incision site, it has healed and the battery doesn’t bother me too much except a little when I’m lying on my side.
    It’s improved my bladder control by 90% so I really hope I don’t run into problems down the line. It’s been life-changing, in a good way!

  • I have had 0AB problems for years and it seems to be getting worse lately. I have been considering the Medtronic Control therapy recently. However after reading all the problems and possible side effects I’ve decided that at age 74 I’ll just live with the problem. I’ve never had any luck with operations and I’ve had my share, but being unable to take any kind of pain medication I’m afraid to take the chance.

  • I have Interstitial Cystitis. I had the trial implant done and had definite improvement. I get up every hour-at least- to go to the bathroom.with the trial I would go 3-4 hours. I thought I was in a Heaven with all the sleep. Then, I the permanent device implanted June 29th. I had some lower back and sciatic pain a few days after, but it is much better now. I haven’t noticed any improvement. As a matter of fact I’m back to the every hour bathroom trips and it is much worse in the daytime. I see the dr on a Wed to get my stitches out. I am praying something can be adjusted or will begin to work.

  • Susan the same thing is going on with me with hip hurting I was told the same thing and I am unable too do cleaning walking shopping so I had mine put in March of 2013 and in Oct of 2013 the hip problem started I am still having the problem unable too work so as soon as can get medical coverage I am having mine taking out I going too go another route and I am keeping UTI
    all the time it like every 4 to 6 mos I am getting them

  • I am a 29 year old female. I have had Over active Bladder for a couple years now. I’ve tried several bladder medicine and pelvic floor therapy. None of which was quite successful. I was told about the interstim. My urologist told me she has seen younger patients with more success with this therapy than with older patients. I decided to give the trial a try. I’ve had the temporary interstim placed for 10 days now. I’ve noticed some great improvement I can go hours without feeling the need to urinate so excessively. After 7 days with the temporary interstim I was sleeping woke up at 3:00am from excruciating pain. Coming from the incision site. Down the center of my lower back. When to the ER. After 8 hours of being there and several test including a CAT Scan. Everything came back normal. Except I was still in alot of pain that was unexplainable. The day the temporary interstim was placed. I was given an antibiotic to prevent any infections, and still ended up with a UTI. Tried several pain medicine no release. A couple days when by the pain has gotten a little better, but was still there. I am scheduled to go back to the doctors in a week. Although the interstim did work in relieving my OAB. It’s not worth the pain associated with it, and if this is just occuring after a little over a week I can’t imagine what could happen years from now. What works for some doesn’t work for all. Definitely not for me.

  • I was born with spina bifida. I am 64 years old and have been functioning very good’ except bladder and some orthopedic problems. When I was 22 years old I was taught how to self-cath, which helped a lot. From tine to time I will get UTI’s. About 4 years ago suddenly I began having bowel incontinence. This is was very debilitating. So, I began my search to find out what was wrong. I went to a gastroenterologist who sent me for an MRI. It showed that my spinal cord was tethered. After seeing four neurosurgeons I found one who said he could help me. Thank God he got me through. But, my Urologist suggested I have the Interstim. I am scheduled for August 10. But, now I think I probably should not do this. I have had severe back and head pain that has put me in bed. I sincerely appreciate the honesty given here. I think I have enough pain and problems without adding more.

  • I am 47 years old. I am on the second interstim. My first implant lasted for 11 years. Only use at night for extreme pain in bladder. Have had MS since 1990. The interstim
    Gave me my life back. I can sleep
    Now with less pain. I do use catheters for all bladder emptying. Can’t due it on my own. Insterstim reduced my bladder pain significantly. Most important aid for MS. I can sleep now= work and finally I got a little life back!!

  • Update, my interstim was removed but broke during removal. Ooops, sorry. It was embedded, tines deployed into the nerve itself causing the nerves down my leg and hip to fire constantly. I cant walk well at at all. I cant shop, sit, watch a movie, mop a floor, cook a dinner, pain pain pain. I’m now off to see a neurologist for more testing since the interstim binds into your body when removing. Apparently, the plastic sheath stayed behind and is now a constant irritant to my spine. I’m scheduled for more testing to see if it is to invasive for removal. Please, please pick your surgeon well. Please research, read. my life changed. I’d rather go to the bathroom at the mall and be at the mall then sitting in a chair unable to move.

  • I have had a interstim for 8 years now. I was one of the trial patients for consipation. I am onto my 2nd stim as after 5 years the first one run out of batteries and somehow I pulled the leads off. It did cause a bit of pain when the leads fell off but it was self afflicted as I must of twisted them off somehow. I have had my current stim for 3.5 years and had no trouble with it. I leave it alone and completely forgotten that I even have it. I so not change the setting and never have on either stims. I also do not have constipation any longer and feel that this treatment has been highly effective for me. It also includes a positive mindset, good diet and exerise. The treatment will not work for you if you are of the wrong mindset and prepared to help the treatment method by being healthy. Also being young and active helps too. All of you with issues with this treatment need to think are you really in the right frame of mind and are you being as healthy as you can be? Being lazy and feeling sorry for yourself will not help.

  • I so appreciate reading these comments. I am sorry about the awful care some of you have received. I have gone thru a few doctors in the past like that too and ran away from them fast!! I have a wonderful doctor who is implanting the wire, step #1, next week. And then the device two weeks later. I am really nervous and scared. Here are my questions:
    1. can I go to work the day after the first procedure and the day after the second procedure?
    2. can you feel the device under your skin? Is it weird if you can feel it?
    3. can a bump be seen from outside of your body where it is located?
    4. do you have to stay away from regular microwave cooking/usage?
    5. how about airport security checks, how do you go thru those?
    6. can you sleep on your back with it in?
    7. any other things I should know that will change in my life?
    8. does it need to be replaced after a number of years?

    Thank you all.

  • I have had the Interstim implant for urinary incontinence in for a few months now and it has NOT improved my situation at all!
    I don’t recommend this.
    I’m getting bladder botox this friday.

  • I just turned 50 in September received the Interstim trail 21 of September 2017 a day before my wedding anniversary. I’ve been wearing it 4 weeks. It has not worked for me ad a matter of fact I’ve been having tingling in my legs and feet with burning sensations. My issue is retaining urine after a hysterectomy in February after wearing a stent for 45days then a catheter bag for about 5 weeks to self cathetering. My doctor now wants to switch the Interstim on the opposite side to see if it will work. After telling me that he thinks that he was going to put the permanent one in even after I told him that it was not working. I don’t know if the doctors and the reps make money off of this but it sure feels like it. The rep calls me 5 to 7 times a day. I finally stop answering the calls. I been going to the urologist every 2 to 3 days to get it clean and bandage changed. I asked the doctor today about the tingling and he stated that the tingling in my arms and legs and the burning in my feet came from a neck or head injury. What????? What dam neck or head injury???? It’s definitely something they are not telling us. The nurse in the office told me that this does not work 80% as was stated by the two and doctor she stated that it was much less than that. She also caution me about getting it permanently. Her exact words was I’m talking to you badge off!!!!! I’ve gotten to know most of all the nurses there and they speak to me truthfully about my ordeal. Today my nurse told me that the two and the doctor are very good friends!!!! I will not be getting this permanently!!!!!

  • I had my permanent placed 11 days ago. Just as in the trial, it’s been a positive life changer for me. The only side effect I’ve had is a rash with bumps all around the site. It seems as though I’m allergic to it. I’ve started twice daily antibiotics, so I’m hoping this works. Also, I had a L/4,5 spinal fusion 5 years ago. It is thought that is why I have had oab. The device does not affect my back at all and I have had no issues with my back or nerves. I’m lucky so far. Hope all of you who had problems find solutions and feel better.

  • I had mine put in after my dr increased my medication if she had increased it prior to the surgery i wouldn’t have needed it. I had it in about 3 months and then i turned it off and haven’t had it back on. It was put in November 2009.. Now I’m going to tallk to my doctor about taking it out,It is pressing on my sciatic nerve to a point to where it’s getting hard to walk that is a result of scar tissue.

  • Just had stage 1 done yesterday, 21 Mar 2018.
    My issues began years ago but no doctor ever considered it a problem . In 2016 I suffered from diverticulitis-perforated and almost died. Surgery to remove poison, perforated bowel, removal of mass found while exploring, and restructive surgery left me more incontinent and increased my bowel accidents. June of 2017, I had had several serious UTIs and in July 2017 so severe that I ended up in emergency room with UTI that cultured ESBL. While in hospital had trouble emptying my bladder and that my infection was resistant to antibiotics. Very, very sick and dangerous situation. Spent 6 weeks in rehab in which I had two more UTIs. What I remember is that I had to go to bathroom so many times during the night and was having numerous bowel accidents a week. 24 hours after stage 1 procedure and did not have to go once the first night!!!!! Back at work the next day with high hopes! Will try to post again at the end of week one. Best decision I ever made…so far!

  • I had Interstim implanted Sept 2017. What followed was 36 hours of explosive diarrhea. Has anyone had a problem like this?

  • I’ve had the bladder control interstim on for almost 9 yrs since then i had right knee total replacement recovery was great with know complication that was 2013, on 2017 i had to get the left leg done 3 months later i was having problem with bending the knee so i had to get a knee manipulation now its going on a year i’m still having complication i guess my question is since the implant affect my left leg could the interstim be the reason why i’m having complication with the leg.

  • Had 2nd stage done April 4, 2018. Interstim doing what is was designed to do. My only issue was the pain from the surgery. Didn’t really have any relief up to two weeks later. This past weekend was the first where I could turn from side to side without any major pain.

    Marie: Was interested in your post as I had a total left knee replacement last year. Since my interstim I have noticed that my left knee has given me a great deal of issue with feeling stiff and not able to bend it as well. Have you spoken to your doctor regarding this and what did they say? I don’t have another appointment until next month.

  • I have had my Interstem device for about 9 weeks. The past three weeks I have had sudden and extremely sharp pain in my left middle back that come and go When the pain comes, it is an 8 on a scale of 1-10 and stops me “in my tracks.”

    My interstem device can be turned down to a very comfortable level, then it seems to have a mind of its own and begin pulsing very hard. If I turn down the strength, it is as if it is not on at all. Does anyone else have these issues?

    I was at my urologists office yesterday and spoke to a tech who checked the setting. She said they have never received a complain about sudden pain in the back area I describe.

    Has anyone else experienced this?

    Thank you for any help. I hope to be able to keep this device implanted. Until this unpleasant effect started, I was very pleased.

  • Within 3 weeks of implant my perfect stool activity became a nightmare. I was lucky to have a movement 3 times a week. It was always hard, bulky and painful to extricate. So compacted that it always the toilet even in public restrooms. I’ve been trying to get it out for over a year and the doctor who implanted it has refused to take it out. The InterStim has stopped annoying frequency of urination, however, it has retained urine to the point where there is no urge to go until all at once there is a deluge that is uncontrollable. Now I am looking for restrooms to prevent raging incontinence. I would NEVER EVER encourage anyone to go with this technique.

  • JUDY: I’ve had the interstim for almost a year. For the first few months I would have the pain you described. My urologist told me it had nothing to do with the interstim.i still get the pain from time to time.

    Almost a year with absolutely no relief. I had it implanted because I have frequency at night. Trying different frequencies still, but getting up for the bathroom every hour is getting very old. My trial showed about a 75% improvement….wish I could have kept the trial. I’m feeling very discouraged and tired!

  • I have had my device for 2 years and 2 months and am about to have it totally removed and they are putting a new one in on the other side. I have back issues and it was put in for loss of bladder and bowel control. Bowel problems got better for the most part, bladder was up and down until a couple of months ago. All of a sudden, complete loss of bladder control. I don’t even know when its happening, it just starts on its own and empties itself. I hope this new one they put in does better. Its really embarrassing to have to use diapers to keep from humiliating yourself at work or even at home. And like others, the back pain became worse almost instantly. Mine was turned as high as it could go and it ran it down in only 2 years.

  • I got my bladder pacemaker in 2015 and got an infection at the incision site, my urgency is worse!! Is it too late to file a lawsuit??

  • I had my device taken out after 8 years of having it . The battery died 2 years ago. Symptoms are gone. The lead broke off during surgery. The Dr. said it’s better to just leave it in. Is there any risk of it migrating or fragmenting in to pieces in my Sacrum?

  • I’m on faze 1. First week was very constipated. So I took Miralax. I’m also lactaid intolerant. I had dairy for Mother’s Day weekend, & have been having FI ever since. This Thursday is faze 2. I have called my doctor but they don’t respond with an answer for me. Has anyone had this problem?

  • Hi, I have MS and have had an interstim for 7 years. Does not really work. Have had it off for a while. anyway the dr said that they have new placement on different nerves that will give me more success I just wonder if anyone else had had this or if the new nerves they found to connect to will cause incontinence? I use catheters now and am getting infections so want to try to stop using a catheter but don’t want to start wearing diapers either.

  • I had my implant done in 2010 The battery died 2 years ago 2016 I requested to have the implant removed, but my doctor told me he would put a new battery in and leave the lead in. I didn’t do it. I waited to see if the symptoms came back, as to not needing another surgery. I had some symptoms with the stimulater too like pain at battery site and sciatic pain running down left leg. As soon as the battery stopped working the sciatic pain stopped. I had a different doctor remove the implant and battery last week and was warned the lead could break off in the sacrum during the removal process. The battery was removed but unfortunately my lead did break off. She explained to me the longer you leave the device in the larger the risk of it breaking off? I think Meditronic the manufacturer of the interstim device makes these leads that are proned to fracturing and have been recalled many times ? I really just want to know is it safe to keep this lead in my sacrum for the rest of my life?

  • Curious if anyone has nerve damage from the sacral nerve stimulator. Mine are connected to the sacral nerves. Can this unit affect nerves in other areas of the body? thank you

  • My implant was installed about week and a half ago. Before 12hours had passed my left knee was not functioning correctly, pain and seeming to not hold me up. Never hve had trouble before. There was no bruising, no swelling no visable injury. JUST PAIN and NOT FUNCTIONING! I am going beck to surgery in 3 days and am going to tell him to take ALL of it out. I would rather wear a Depend the rest of my life and have my mobility back!

  • I had the inter stem 2 done exactly a week ago today,However if I knew the pain I would be in I wouldn’t have went through it.I know it’s only been a week but where the incision is it’s very sore and tender very uncomfortable to sit or even sleep

  • I’ve had the Interstim for 24 days. It has greatly helped my urinary retention but the side effects are really scary and different from day to day. For the last week I’ve had a burning and pinching pain starting at the lead incision site and about 4 inches going down my right buttock when I sit in my car or on a sofa with numbness in my foot and or leg. I’ve had to decrease the Amps significantly to manage the numbness which reduces the effectiveness of the treatment. Medtronics gives you the brush off and my doctor looks at me like I’m crazy. I feel so alone and wish there was a support group to discuss these issues. It’s overwhelming and I hope there is some adjustment that can be made because the therapy has worked for me but the pain in my back isn’t tolerable long term.

  • Had the Interstim implanted three days ago…I had lower back pain during the trial, but dr said was not related. I believed him. Now after my implant, I am experiencing the serious incision site and lower back pain. I would go so far as to say my WHOLE LOWER TORSO aches significantly, with sharp pain at the incision.
    I am embarrassed I did not find/read the comments here.
    Question? Does anyone know someone, personally, that has the implant and is mostly happy and painfree?

  • Had an interstim implant in February. Since my restless leg syndtome has multiplied and I am ready to jerk this implant out. Need relief. Has anyone else had this problem?

  • Thank you all for your honesty and for sharing you experiences… this was recommended for me because of bowel incontinence due to pudenal nerve damage (baby’s head crushed it during birthing process)… wow y’all. I’m convinced NOT to borrow any more trouble and pretty sure that the risks of complication, infection and other new mysterious pain isn’t worth the risk… may The Lord bless each of you and give you relief and healing. You are courageous and amazing human beings, hang in there.

  • Has anyone had good results of this product?
    I am about to have this done and after reading all the complaints I am not sure.
    My problem is only bladder. Will this interstim cause bowel problems after?
    Thank you

  • I have had fecal incontinence for years on and off. My colon surgeon has suggested the Sacral Nerve Stimulator since last year when I first visited his office. I have been undecided about the surgery for various reasons. My Family Doctor knows about this surgery and has recently suggested it.
    I was ready to ask for this surgery in the near future when I stumbled today upon this blog. I will NOT get this surgery now. I have NOT had back nor knee pain and I don’t want to start with either.
    I have had a diagnosis of Rheumatoid Arthritis for the last 30 years with lots of ineffective meds. Presently my IV Remicade monthly has helped me the best over the last ten years. I have also had about ten hand and foot surgeries to keep me functioning. So this time has been my best quality of life with my R.A. I don’t want to lose any more function.
    I would like to try the Eclipse System, a vagibal balloon which I take in or out and I can pump air into it to make a small balloon inside my vagina. The inflated balloon puts pressure on the rectal area to prevent a fecal accident.. No surgery. Simple.
    The Marketing Rep said it should be available in my Houston, TX area next year. It is presently available in Dallas, TX by a female doc there. I am very ready to try a non-surgical treatment by which I won’t have the side effects mentioned by the above SNS.
    Thank you all for your medical comments. You have helped me more than you know!

    For now I will continue my present treatment for my fecal incontinence: 2 antidiarrhea pills at onset of fecal incontinence–which keeps me normal for 2-3 days, high fiber foods, no gassy or vegies in the cabbage family, lots of water to drink, and whole, healthy foods to eat–avoid processed foods–they cause inflammation which is responsible for most of our American illnesses.
    Thank you for your comments.
    MLE

  • I had the device inserted to help incontenance March 2, 2018. While the incontenance improved, I have had major pain around the implant site and where the leads leave the device as well as significant pain and pressure in my pelvic areas. I have never taken so many pain meds as I have since I had the surgery to have it implanted. Had an X-ray taken the other day to ensure the leads were not fractured and were still in place. Everything looked okay. My doctor believes it’s scar tissue pain. Anybody else had symptoms like me?

  • Where am I supposed to feel this sacral nerve stimulator for fecal incontinence?. I’ve had it 2 weeks with NO relief but my leg is the only place I feel the pulse.

  • Had the permanent Sacral inserted 4 wks ago.Had Unbelievable pain in lower back with the trial but seemed to give me relief from my symptoms at around 50 %.So went with the 2nd stage.Pure torture since.Pain is so nagging ,symptoms have come back.Going back to Dr next wk. but having exrays before appointment. Had post op already but having RLS,legs giving out also & broke my ankle 3 wks ago.IDK if i have infection or leads are not right. Already have had FBR (foreign body reaction ) from a Mesh implant & nerve damage.Anyone else having issues with number #3058?

  • Had for 2 years. Suddenly received an electrical shock that caused me to almost hit the floor. Rapid pulse over and over. I felt like I was dying. Call doctor and went in. It took 2 weeks for appt. I explained what happened. I told her I wanted it OUT !!! She told me to leave it off for the next 6 months and come back in. We don’t want to just go in and jerk it out. I agreed but left very unhappy. It was great, no problems. till that day it shocked !!! Also remember when getting it ….no MRIs. I learned a lot more about it after I got it. The Metronics Representative spent 5 minutes with me….Maybe. I told the dr. since my shock my legs hurt so so bad. I cant sleep at night they hurt so bad. I really just want it out. I’m 56 and has it 2 years. I was so excited about it….UNTIL I GOT SHOCKED !!!!

  • 3 1/2 months since my stage 2 procedure. Procedure is doing what it is suppose to do BUT at my 1 month follow-up I let my doctor know that the device is jetting out from my butt check. It gets caught at times and is very painful when it happens. The doctor said it just hadn’t settled into its pocket yet. Give it another 2 months. Well, here it is 2 1/2 months and still an issue so now I have to go through surgery again to correct it. Scheduled for August 1, 2018. Have to wait til then because my “great” insurance company UHC doesn’t think being in pain and uncomfortable is criteria for moving the process along. Even with this hick-up, it is still the best decision I ever made.

  • Rich – no you are not to have MRI’s. Your medtronic consultant and doctor should have explained that to you. Please ensure you take your ID card with you to any doctors appointment for any procedure / xray etc you need done.

  • I had my sacral nerve stimulator implanted in June of this year 2018 and I love it! The Stage 1 and Stage 2 surgeries were pretty much painless. I took pain pills the day of surgeries and Advil after that. I’ve had urinary incontinence for at least 10 to 15 years and this procedure has improved my symptoms 80%. Immediately after the trail started I could see a big improvement and looked forward to Stage 2. It’s not perfect but I’ve gone from wearing an overnight pad 24 hrs a day to a panty liner most of the time. I’m a walker and I have more leaking when I walk so I just wear a heavier pad at that time. I don’t notice the vibrations from the stimulator most of the time. I’d do it again and again. I’m writing to give another view of what it’s like to have this procedure done because there are a lot of complaints on this site. My surgeries were at the Ohio State Universary Hospital in Columbus, OH and it was certainly the answer for me.

  • I need some feedback from those that have had the Medtronic Bladder Control Therapy/ InterStim System implanted. My mother has numerous bladder and urological issues and has for years. She has Alzheimer’s and her specialist is recommending this device be implanted first for a 4 day trial and then permanently. She definitely has significant issues and we have exhausted other treatments but after reading many of your experiences I am definitely concerned about moving ahead with this. I greatly appreciate any information provided.

  • My urogynocologist is recommending this for my problem, detruser sphincter dyssynergia. In English, this is a nerve issue which causes both urinary retention and frequency….two opposing forces. There is the need to urinate every two hours, including at night, with the inability to empty my bladder without pressing and pushing. I am very leary of having the procedure and device at this point, due to the hundreds of negative comments which seem to outweigh the few positive ones. Has anyone ever had the device implanted for this particular issue, and can you share your experience? Thank you.

  • I had my Medtronic device implanted nearly 4 weeks ago. It did stop leakage but really did nothing for my overall problems.
    The main problem that i have is severe back and leg pain and instances where one or both legs go i to a very painful cramp like spasm. Pelvic pain also periodically. The device has actually made matters worse because i am now really badly constipated and need to take Dulcolax every couple of days to get a result. The problem with that is that I finish up with motions that are difficult to clean up and then diarrhea which usually results in an infection.
    The reason that i had it inserted is leakage causing infection.
    I retain urine and have been self catheterising for about 8 years.
    I had a trial about 2 years ago that was not successful but my surgeon said that i could have a better result with a permanent insertion.
    I had very little support from the Medtronic rep for either the trial or now.
    I have decided to have it removed as I feel that it not only of benefit to me but the problems encountered and the contraindications make it not viablefor me.

  • Scheduled for Interstim phase 1 install Sep. 4th, but quite apprehensive. Side effects on here are scary. I get my bladder emptied once a month at the urologist office. Store between 900-1400 mg of urine. Not UTI’s, just cloudy urine. No pain. I do make myself try to go every 60-90 minutes. Any ideas on if I keep doing this monthly can I be ok without surgery? I am 69 yrs old in good health, and worried. I would appreciate any help from anyone if possible. Thanks.

  • Following a serious auto accident in July 2016 in which I had seven lumbar fractures and six pelvic fractures, I became urinary incontinent (urge incontinence). My gynecologist referred me to a urologist who has done lots of InterStim implants for bladder incontinence. After a trial period in which the results were wonderful, I had the permanent implant installed. There was a lot of pain following the implantation of the leads and prep of the “pocket” but it was minimal compared to the pain of the permanent implant. The doctor said this was unusual and there was usually minor pain with the temporary procedure being more painful.

    The temporary device was easy to adjust with the remote. The permanent device had different programs than the temporary one — does this make any sense. I had trouble following the directions in the manual for programming adjustments. I have been a teacher and business owner and my husband was a rocket scientist. Why can’t the manual directions be more easily written? Calls to tech support were useless. They refused to assist with adjustments even though local rep had said that was their function. I called the doctor’s office who had the Medtronics rep call me. He took info about tech support and assisted me in adjusting the device. I then had his phone number for additional assistance which I haven’t needed. When I went in for one year check-up, the nurse discovered that my device had gotten turned off. That was spontaneous because I had not needed to adjust. I had no difference in continence. She re-programmed the device but her only concern was that I feel the pulse, nothing about the location or intensity. I adjusted myself later.

    I don’t know why the temporary implant has different programs than the permanent one. With the trial period, we work out what works only to have to start over with the permanent device. Finally I was able to find something that worked well. I wear panty liners or pads but this s such an improvement from a constant flow. I am satisfied with the results.

    Since the implant, I continue to have pain in my right buttock, where the implant is located. The pain at the sacrum went away after about six month. For almost a year, I have been having pain in my lower left abdomen. I did not consider the InterStim to be a possible reason for the pain. My gynecologist suggested that the pain was from my colon. My GI doctor said the pain was from scar tissue from a long-ago hysterectomy. Now that I have read the comments above, I am wondering if it’s the InterStim.

    A bit over three weeks ago, I spontaneously began having excruciating pain in my right groin when I attempted to walk. While sitting or lying, the pain is constant and dull. Upon standing the pain becomes more pronounced and is almost unbearable when walking. I went to my rheumatologist, who ruled out arthritis in the hip, and gave me a steroid injection for bursitis. Lab work, x-rays and a bone scan show nothing. I consider this is likely due to nerve damage caused by the implant and turned it off three weeks ago. Again, there is no difference in continence now if the device is on or off.. The pain continues and I’m waiting to hear what the next step is from the doctor.

    My idea is to see a neurologist next to learn if there is nerve involvement causing the groin pain. If so, I hope something can be done about it. Then I plan to contact the urologist to have the implant removed. I am hoping that this stops the pain at the site of the implant and maybe I can get rid of the abdominal and groin pain.

    Would I do this again? Well, my life was seriously impacted by the constant urinary incontinence before the implant. Now I am so much better as many others are. Most people who are happy with the results aren’t looking for a page like this.

    Perhaps I didn’t wait long enough for the nerves controlling bladder function to re-grow. I think perhaps the urologist should have encouraged me to wait a while longer for this to happen. With the information I had, this was the best decision I could make at the time. However, since it is not making things any better now, I see no reason to keep this foreign object in my body. I am concerned about the pain and any problems with removal.

    I am so sorry about all the problems others have had. I can’t imagine anyone having the device installed without anesthesia. That sounds barbaric. Y’all are all in my prayers and I hope that your issues can be resolved.

  • I had IS put in Sept. 16 after a very successful trial period. I was going 2-3 times for as little as 3 oz of liquid. I starting feeling my machine probing through my skin about a year later causing a lot of leg and back pain. My IS turns itself on and off not sure how , Medtronic’s could not explain. June 2018 I decided to go into my Urologist and tell her about all of my pain and showed her how my machine was protruding out of my backside. She said well the battery is still good are you sure you want to surgically fix it my IS was laying on its side in the pocket versus laying flat as it should be I explained to her that It was very pain full clothes rubbing laying sitting etc. She reluctantly did a revision on the pocket and said that the lead placement was fine. I am often now having what I assume is sciatic nerve pain that is pretty excruciating on the side where my machine was implanted. Could the machine in fact cause issues with my sciatic nerve? Or could this pain be caused because of lead placement? Any Insight would be great. I am wondering now what’s worse dealing with the pain or frequent accidents?

  • I am scheduled for trial bladder pacemaker implant in October. Been cathing for two years with minimal issues. Have read and am concerned about side effects and issues with pacemaker.
    Any suggestions or comments would be apprciated

  • Interstim Therapy I had mine done by Dr Marcy Abel in Nashville TN she was absolutely amazing. Took her just a few minutes to figure out what was wrong with me because she listened to me!! Had the trail done then the actual surgery March 2012, no issues whatsoever. Battery replacement September 2016. Note I went to a different Dr for years who never fixed out my problem. I was extremely impressed by Dr Abel and her ability to figure it out so quickly. She did do testing to confirm her thoughts and she was spot on!!! I’m glad I had the surgery. It changed my life for the better.

  • Hello, I was implanted in February 2017. I was implanted because of a bladder mesh gone wrong that resulted in a total reconstructive rectum surgery. My bowels were so bad, that I was going constantly no matter what I ate or drank. I lost friends because I could not do anything without having to go to the bathroom. My life was stopped. I have a husband that Thank God has been by my side through all of this.
    Shortly after getting it and the incision healed, I still had issues with pain. I went back to my doctor several times only for her (colorectal specialist) to tell me that everything looked great. She adjusted the site of vibration, she upped the frequency, she even had a CT done to check the leads. All looked great according to her.
    Since I have gotten implanted, cramps and bad spasms in my legs, pain in my groin, pain in my side abdomen that is unexplainable, vascular issues, back pain, sciatica pain, even where the site is can be painful.
    I have a different health issues, but a lot of what I just spoke about did not start until after I was implanted. My husband and I talked about it and he said if it is not helping, then have them remove it.
    My next step is to contact my Colorectal Specialist and request it to be removed. Good Luck to all that have been effected. God be with you through your long journey.

  • Does InterStim ever cause high blood pressure? I had mine reprogrammed and increased and my BP has been sky high!

  • I had the interstim placed last month for bowel issues. Immediately it was extremely painful across my low back. Also, the therapy did not work for me. It was “business as usual” during the entire two week trial period. It was only after I had the implant placed that I was told it probably would not work for me because of the watery bowels I have – it will not help that. It would have been nice for them to mention that before the trial. Anyhow, it was removed almost three weeks ago and I have had continuous low back pain. It is extremely sharp and constant. Of course, my colorectal surgeon and the Medtronic rep state it just can’t be from the device. I know that it is – and so do they. They just do not want admit it. All I want to know is, how long does this pain last? If anyone has experienced this, I would appreciate it if you could let me know how long it took to subside. Thank you.