What Do You Know About InterStim Therapy Side Effects?

Posted May 21st, 2011 by

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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171 Comments

  1. 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 🙁

  2. 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.

  3. 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?

  4. 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.

  5. 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.

  6. 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.

  7. 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

  8. 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.

  9. 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

  10. 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.

  11. 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!!

  12. 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?

  13. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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?

  18. 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!

  19. 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 🙂

  20. 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

  21. 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

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