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Has Interstim worked for anyone??

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  • Has Interstim worked for anyone??

    I've been through all the meds and botox, which I don't think is doing much, so dr says my last option is Interstim. It sounds costly and complicated and it doesn't appear that a lot of folks find it helpful. Is there anyone here who has had success with it? My symptoms are frequency and constant urgency.

  • #2
    Re: Has Interstim worked for anyone??

    I've had an Interstim since 2006. You don't hear about the success stories, because we rarely look at the boards after we feel better (my opinion).

    I had a complete success with my Interstim. I went from going to the restroom every hour while awake & every 2 hours at night, to only going every 2 - 3 hours while awake and only waking up once each night. Before Interstim, I had 24 hour urgency that was pretty severe. The only way I knew I had to "really go" was when the pain & pinching sensation got too severe. After Interstim, the urgency is gone maybe 85 percent of the time. I still have flares, but only one or two a month and much less severe than before. When I had my trial, I went to the Cleveland Clinic, which is about a 4 hour drive from home. Riding in a car was always very bad for me with at least hourly stops. But we chose to drive home after the trial & my husband actually had to stop about 2 hours in because he had to go! I didn't feel any need to stop, but of course, I did go ahead and go. So I only went once on the 4 hour drive home. I knew then it would be a success. The surgery was painful and recovery took a while. I couldn't sleep on the side where the implant went for many months. But I work in an office & went back to work in about a week (if I remember correctly). The implant site in my hip ached for a few months and it was probably a year before I could bump it without it being sore. (The original implants were larger than the new ones). I have a 5 inch scar on my hip and they cut the same place to replace it. So it's really not pretty. But, I'm 42 and have been married for 22 years, so I can deal with the ugliness.

    My original Interstim lasted for 7 years and had to be replaced last year due to battery failure & stripped wires. Some of the plastic was off of the wire and it was causing some shocking sensations. The new implant is quite a bit smaller and rarely ever aches. It was uncomfortable to have replaced, I won't lie. The wire had to be replaced because of the damage and they had to "dig" a little to get the lead out to replace the wire. From what I understand, that is rare, usually they just replace the unit and don't have to replace the wires. The new smaller units last 3 - 5 years, so it will have to be replaced sooner than the last.

    Overall, I love it. My life has completely changed. I am mostly normal..I went to Disney World several months after I got the original implant and was able to ride roller coasters! Now, I have flares and some problems maybe once or twice a month. Before, I only had a few good days a month.

    But, it is serious surgery and should be thoroughly researched. And if you really consider it, find a doctor with a lot of experience, not someone that's only done one or two.

    Good Luck! Let me know if you have any questions, I'd be more than happy to answer.

    Jenel

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    • #3
      Re: Has Interstim worked for anyone??

      Thanks for the story, good to hear this has worked for you. I'm doing a trial on 3/10, so keep your fingers crossed for me!

      Moderators, you may want to move this thread as I think I posted in the wrong category. Thanks.

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      • #4
        Re: Has Interstim worked for anyone??

        Interstim has helped me with frequency, so I sleep better. There are some drawbacks, but they are manageable. I'm now on my second unit, and as it has the smaller battery, will have to have it changed again in 2016.
        IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

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        • #5
          Re: Has Interstim worked for anyone??

          Thanks good to hear another success story. Urgency and frequency are my main IC symptoms and they've driven me up the wall for years.

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          • #6
            Re: Has Interstim worked for anyone??

            I'm headed in that direction very soon. I even consulted with a URO about it this week. thanks for the success stories.

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            • #7
              My urologist is recommending the Interstim. I did some research and am bothered by what I've read. About 50% of the time it has side effects ranging from mild to severe. I don't really like those odds and wondering about others who have had the Interstim lately.

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              • #8
                We just talked about this in our meeting yesterday that I streamed on FB and Youtube. You can watch it at: http://www.youtube.com/icnjill/

                Someone asked the same question so I went over to the FDA's MAUDE database to see what had recently been filed with respect to side effects and a LOT had been filed just in January of this year... like 40 or so. That, ultimately, is the biggest challenge with Interstim besides the cost. The side effects can be very severe, often deep tissue MRSA infections. Device malfunctions occur and, sadly, even some fatalities have been reported. One patient had their heart rhythm change to match the pulsing of the device.

                While neuromodulation is certainly a viable therapy that has helped many, most patients don't start with Interstim anymore. They go first to UrgentPC, which is an ankle stimulation developed at UCSF which targets the same nerve. It's just closer to the surface of the skin and can be accessed easily with an acupuncture needle down by the ankle bone. I had it done myself when both Interstim and Ankle Stim were being developed at UCSF and I thank god that I ended up in the ankle group.

                Check out https://www.cogentixmedical.com/pati...ucts/urgent-pc for more info!
                Last edited by icnmgrjill; 02-21-2019, 11:09 AM.
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                • #9
                  Originally posted by icnmgrjill View Post
                  We just talked about this in our meeting yesterday that I streamed on FB and Youtube. You can watch it at: http://www.youtube.com/icnjill/

                  They go first to UrgentPC, which is an ankle stimulation developed at UCSF which targets the same nerve. It's just closer to the surface of the skin and can be accessed easily with an acupuncture needle down by the ankle bone. I had it done myself when both Interstim and Ankle Stim were being developed at UCSF and I thank god that I ended up in the ankle group.

                  Check out http://www.urgentpc.com for more info!
                  Thank you Jill. I came in your broadcast yesterday late. I'll go watch the whole thing. The Interstim is a huge worry for me but my Urologist recommends, and is pushing it. Unfortunately, other recommendations she's made, or comments have been off the mark. Example: Frequent urination is not a symptom of IC, you must drink 14+ glasses of water a day, she wanted to burn the lining of my bladder in the hopes when it heals the IC will be gone. Luckily I went for a second opinion to an Urologist at the U of Washington who looked at me as if I'd grown a second head. "You can't drink that much water with an IC bladder" "Of course frequent urination is common with IC', "What! Burn your bladder? No way". The result is I now don't trust my regular Urologist. Life is so much fun and, at 77, it just keep getting funner! :-) In the meantime, I'm still searching and hoping. I'm used to being in motion all day and this *&$#@ IC is keeping me down. I'm not old enough to sit back and do nothing.

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