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.”
JOIN PATIENTSLIKEME TODAY
Have you been implanted with an InterStim Therapy device? Join PatientsLikeMe and add your experiences with InterStim effectiveness, side effects and more to our growing body of knowledge. Then, stay to exchange advice and support, research common treatments and learn from other patients like you.
View Comments (258)
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!