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Is Interstim for pain control??

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  • #46
    It currently helps my pain but not my frequency.
    current meds- ditropan 5mg xl, neurontin 300 mg. zanaflex for pelvic floor spasms Most meds, IC meds included, cause me bladder pain

    previous med- elmiron( nothing after 8 months), atarax ( to sleepy), ditropan ( retention), Cymbalta, cystoprotek( worsened flare) has helped many others, aloe vera ( worsened flare), lyrica( irritated bladder.

    interstim implant (reduces my ic pain)January,2007


    • #47
      refused interstim due to injuries!

      I went for a trial of the implant. The doctor did a full exam and Q and A session. She will not touch me due to past tailbone injuries and sacroilliac joint disfunction. She said it would only add to my pain. I was considering it for PAIN control and that is what it was intended to do??? So I have to go back and get my lower back issues sorted out. Maybe this is not an option for me at all.
      Interstitial Cystitis: Elmiron and Hydroxyzine
      Depression/Anxiety: Remeron, Cipralex and Clonazepam

      *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
      * 2 hydrodistentions :

      * currently on "Nabilone" for pain management

      Taken the following:
      Gabapentin no relief but could tolerate it
      Lyricano relief but could tolerate it
      Cymbalta severe depression/anxiety etc.
      Topamax severe nausea and weight loss
      Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

      What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

      Other conditions...
      Vulvadynia (amytriptaline cream - no longer using to to irritation)
      Severe IBS
      Chronic Sinus pain (nasal rinse as need)
      Lower back and sacroiliac joint disfunction

      Allergies: Erythromycin, scents and detergents


      • #48

        I actually asked my husband's neurosurgeon(who did the implant for my hubby), about interstim for IC. This doctor is one of the developers of the current stim that my husband has, and an excellent surgeon.

        He said although it often works very well for failed back surgery pain, (it really helps my husband), he would not use one for IC as the pelvic area is very complex and difficult to treat, and the stim. is not shown to help with IC pain.
        Too bad.


        • #49

          I'm from the Netherlands and looking for solutions in your forum, which often scares me more.
          I know from people in Germany that had Interstim for urgency at the S3 nerve, but other people have the Interstim for treating pain, by putting the leads at the S2,S3 und S4 in the back, so not through the sacral hole and it helped for pain very much. Then I ask why can't this done for both??
          Anyway in the Netherlands by far I know the only way it is done for frequency yet. I could get a trial for that this next month since medication for frequency don't work or cause me much more pain in the abdomen.
          Hope to hear more succes story's! I have severe frequency (30-40 times a day and got this after a removal of the large bowel)and if I don't pee right away my urethal hurts very very much.


          • #50
            We FINALLY found a really good uro, who we trusted to do a hydro. Bob's last uro refused to do one. Anyway, the new doc said Bob's bladder is really bad, he could go down the checklist for IC and double check every item. He is riddled with Hunners and his capacity was down to 150. He was unable to even take pictures because it was too murky. So, what now? Stay the course with pain meds and pursue medical marijuana (legal here) which we are doing. He mentioned interstim, although he does not do them, BUT he said it would do nothing for Bob's pain, may only help frequency, BUT Bob has a tendency to retain fluid and it could be a danger as he has ended up in the hospital before. Before the hydro his lower legs were so swollen they looked as though they would burst, and it was questionable whether they could proceed, but the anesthesiologist said okay, he would just twilight and not intubate unless he had to (he didn't). So the interstim is not an option, we know how bad Bob's bladder is, we have to live with it. He came through the hydro fine, he asked to come home with a foley so he could get some SLEEP, which is all he did for 2 days. He removed it himself. As the hours go by (this was 4 days ago) his pain and frequency are creeping back in and we are off to the pharmacy to refill his pain meds. His urine is clear and no infection, doc was real gentle with him. So anyway, the interstim is not even an option here. Jill, wife of Bob


            • #51
              Hey, I know what you are posting and I know what this doctor told me. He said it would help with my IC, leakage, PFD pain, IBS, and CPP pain. The reading material he gave me is on the interstim operation and what to expect and he gave me info on PFD and I have an appointment to go see a PT who does PFD. My husband was in the exam room with me.
              IDK can I post his information here?
              I saw him at the Pelvic Floor Center in Bloomington Minneapoils Minnesota.

              Steven W. Siegel, M.D.

              Minneapolis ? Pelvic Floor Center

              Woodbury ? CornerStone Medical Specialty Centre ? Woodbury

              Dr. Siegel is the Director of the Metro Urology Centers for Female Urology and Continence Care. He established this center of excellence after moving to Minnesota in 1993. Previously, he was the Head of the Section of Female Urology and Urodynamics at the Cleveland Clinic in Cleveland, Ohio. He graduated from the University of Michigan Medical School, and completed his urology residency at the Cleveland Clinic in 1986. Dr. Siegel is internationally recognized for his work related to urinary incontinence and voiding dysfunction. He is responsible for training urologists and gynecologists locally and throughout the nation in specialized techniques, and continues to actively participate in the education of fellows and residents, lectures, clinical research, and publication in medical journals. Several of Dr. Siegel?s former fellows have been recognized as ?Top Doctors? and ?Top Doctors for Women? in the Twin Cities metro area. He received the Christina Manthos Award for demonstrating extraordinary mentoring skills in supporting the careers of female urologists from the Society of Women in Urology in 2011. He was also honored with the David C. Utz Award for Urological Advancement and Innovation from the Minnesota Urological Society in 2002. He is a recent Past President of the North Central Section of the American Urological Association (2010), and Chairman of the Practice Standards Committee of the Society of Female Urology and Urodynamics. He previously served as a founding member and President of the International Society for Pelvic Neuromodulation.

              Clinical Interests
              Female Urology
              No Scalpel Vasectomy
              Pelvic Pain
              Urinary Incontinence and Voiding Dysfunction

              Cleveland Clinic Foundation; Cleveland, OH

              Medical School
              University of Michigan; Ann Arbor, MI

              Undergraduate/Graduate Education
              University of Michigan; Ann Arbor, MI

              National Board of Medical Examiners
              American Board of Urology

              Minnesota, Wisconsin


              Direct Dial/Voice Mail

              Make an Appointment
              Find a Doctor
              Find a Clinic location


              • #52
                I just go my InterStim placed today. I saw a post here about bladder pain. Perhaps it is a spasm. I had these caused by an overactive bladder. The trial helped the overactive bladder and therefore relieved my pain. If anybody wants to contact me, I am on Face Book.

                Cherry Bunker


                • #53
                  How long was your trial Cherry?
                  Diagnosed with IC in May 2011

                  Current Medications:
                  Elmiron 400 mg daily
                  Imipramine 75 mg daily


                  • #54
                    Do you mean your husband retains fluids, like water, in his body? Or retain fluids in his bladder? The reason why I ask is because the Interstim is suppose to help with urinary retention. There is n Interstim page on facebook which is a good resoource.
                    Diagnosed with IC in May 2011

                    Current Medications:
                    Elmiron 400 mg daily
                    Imipramine 75 mg daily


                    • #55
                      No, no, no, interstim is not an option for him. Interstim is supposed to slow your frequency and urgency. If his bladder was to slow the flow, he'd be in CHF and would be, well, not with us. His condition with retaining is a whole seperate issue, so it's complicated. Sure the IC does not help because he does not want to take his water pills, without, he'd be gone by now from heart failure. He takes because he has to, he blows up like a balloon, his legs weep fluid and he can't wear shoes. This is not related to his IC (was going on before), the problem is he doesn't want to take his water pills BECAUSE of the IC (and who would), geeze, he spends 12 hours a day on the toitey without taking.(has developed an imprinted butt, looks like an inverted toitey seat). He can retain up to 50 pounds of fluid at any given time, so slowing that down is deadly for him. Thanks for the question, and anyone who has urinary retntion problems should look twice at this alternative. By the way, he is overweight, but about 50 lbs is fluid and he is not a grossly obese man. His doc told us this week he would saturate him with diuretics if he knew the pain with the IC would not take him first.


                      • #56
                        Oh, and after seeing many uros, all told us the interstim is very rare for pain control, just frequency and urgency, but maybe things have changed in the past 6 months. I'm not a doc, and would always get a 2nd-3rd opinion. If a doc is "pushing" it (they make big $$$ off it) would def see someone else, even if the others say a big NO. Never take the first opinion for a surgery unless you truly trust your doc with your life.


                        • #57
                          Good for you, you maybe never had IC to begin with, so therefore it is helpful for you. Hope it continues and you get the relief you deserve. YAY!


                          • #58
                            My IC presented with hunners ulcers, pinpoint bleeding, scarring, and shrinkage. My doctor took a photo of my first bladder hydro and he showed it to me so I knew what he was talking about. About 75% of my bladder at that time was a mass of red bleeding spots. The doctor told me it was not the worst case of IC he has ever seen but it was right up there.
                            My SSDI case was affected a great deal by this photo of my bladder and I won my SSDI case.

                            My interstim doesnt slow down my peeing. b4 I got my trial interstim I would sit and pee and pee so slowly, it has been 13 days since my trial interstim was put into place and I still pee slowly. The doctor never said anything to me about my peeing being slowed more than it already was-is.

                            Low back pain, curve in my spine and a fractured tail bone and my doctor went in and did the Trial...wrapped that wire through the holes in my tail bone. Like I said b4 this doctor seemed to think that it might help with my low back pain....he seemed to think it would help with my CPP. I dont know if it is where he sets the end of the lead or what....we shall see if it works for one or the other.
                            It has not helped with my IBS as of yet.
                            Last edited by ChrisNes; 09-12-2012, 07:35 PM.


                            • #59
                              I am so sorry your husband is going all of this. I work in the medical field as a social worker and many of my CHF patient's hate the water pills. To add IC on top of this must be so difficult. I am glad you and Bob found a good URO. Thinking of you both!
                              Diagnosed with IC in May 2011

                              Current Medications:
                              Elmiron 400 mg daily
                              Imipramine 75 mg daily


                              • #60
                                Hey, I got my Interstim implant on the 19th and I took off my pad in my panties. so far no leaking with urge. I have 6 more weeks of doing nothing. The doctors want scar tissue to develope around the wires. I had a kink in a wire on my tailbone, the doctor thought that may have been why I was getting the surges, so he opened that up again and took the kink out. All is fine so far, I just have to keep telling myself not to lean over, reach, squat, or lift anything for the next 6 weeks. The pain med they gave me this time still gave me the itches. I am uncomfortable sitting in my chair so I just lay around. LOL I didnt know the device to change the settings would be so big. It is bigger than my cell phone and I have no room in my purse for it. I wld like to go to the post office and try it out lol...maybe when I am all healed Ill see if I set off any alarms.