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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157 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

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