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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198 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

  22. 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

  23. 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

  24. 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.

  25. 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.

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

  27. 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

  28. 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.

  29. 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?

  30. 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.

  31. 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.

  32. 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.

  33. I am 37 yrs old and had the Interstim trial placed on June 6. First day i noticed improvements immed

  34. 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.

  35. 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.

  36. 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!

  37. 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.

  38. 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.

  39. 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

  40. What’s up, this weekend is nice in favor of me, because this occasion i am reading this impressive educational post here at my house.

  41. 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.

  42. 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.

  43. 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!!

  44. 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.

  45. 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.

  46. 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.

  47. 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.

  48. 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!!!!!

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