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Interstim is working!

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  • Interstim is working!

    Hello everyone,
    I am a 37 year old woman who went through both the 5 day interstim trial and the permanent interstim implant surgery. My permanent implant is now 1 month old. It has been 6 years since my official diagnosis with IC and PFD. The first couple of years I had success controling my symptoms with Ativan, Atarax, Elavil and Elmiron and Pyridium/Uribel/Urelle. As time progressed my flare ups grew more severe, and lasted longer. My symptoms were urgency/frequency (about every 20 min. on really bad days), abdominal preassure and pelvic pain. I went through several sessions of physical therapy for back pain, pelvic pain, and pelvic floor spasms. My Uro (who is awesome!) beleived that we had the IC under control, but we had to work on getting the Pelvic floor dysfunction under control.

    I was referred out to a pain management center that specialized in female pelvic pain. There I did a combination of physical therapy, and weekly Trigger point injections in to the lower abdomen. It sucked! It was painful, but after the pain and soreness subsided I noticed that it was making the pelvic pain and the constant preassure I felt on my bladder feel a little better. After 4 of these trigger point sessions, the 5th went wrong.

    The physician injecting me hit my bladder and it set off probably the worse flare up I have ever had! It was weeks, and weeks and the pain and discomfort were not subsiding. Even worse was the fact that I had to wait a month to go back in for a follow up. I made an appointment to see my regular urologist - I felt broken, hopeless, and defeated. I asked her about what else we could do - I needed something that worked, I needed releif.

    My doctor spoke to me at length about Interstim. I received the brochure and the DVD about it. I did a lot of online research, and found out about the good and the bad. after a few weeks of contemplation, and realizing that I had done all the other less invasive things to help my IC and PFD symptoms, I decided to ask for the trial.

    The trial was great! The temporary leads were placed at 10am, and by 7pm that night I was peeing less, and felt a little less cramping. After two days of using the left lead, I switched to the right lead which worked even better. As the days went on I used the bathroom less, and slept through the entire night! I did not have to use either Uribel or Pyridium. I went back and reported my experience to both my doctor and the Interstim rep. 1 week later the permanent implant was put in at an outpatient surgery center.

    The surgery was a 7am. For the first part of the surgery I was under local anesthesia only. Once my doctor found what felt like a "good spot" in my back, I was put under. When I woke up I had my new Interstim. Both my husband and I were trained on the settings, and general functions of the Interstim Remote. The week before the surgery my frequency/urgency/pain symptoms had returned. on the day after the surgery I started to feel better. Less trips to the bathroom, less abdominal/pelvic pain, though still very sore at the implant site.

    It has been one month. I have had to play around with the settings here and there, but I am doing very well. I thought I was going to be freaked out by being able to feel the battery under my skin, but it has had the opposite effect. I love this therapy. I love being able to have some contact with the device that has made me feel so much better. It took me years to get to this point, and I am happy I proceeded through all of my treatment options carefully, and cautiously. I know this is not supposed to work to deminish pain - but it did for me. I am very happy I had the surgery done. I am back at work, and though I still have soreness at the implant site, it is manageable discomfort. If any of you have questions, or want to talk I am happy to communicate with you. I was scared and had lots of questions. I know I wrote a lot, but I wanted to share as much as I could. And, I hope my post helps someone.

  • #2
    I had the implant done last year but it was removed after 6 months. The trial worked really well but the regular implant didn't do enough to justify the discomfort. I don't think it was implanted deep enough and I kept hitting my rear on things. Glad to hear it worked for someone though....I think it had great potential


    • #3
      It's awesome to hear how well you are doing!

      I got my interstim in 2006. For the first few years I had to go back and have adjustments, but now it's probably been 3 years since we changed any settings. I still have some bad times, but nothing like my pre- implant days. My worst day now is maybe like a good day back then. I haven't regretted it once. But I do have to say that it still aches sometimes where the actual unit is. I can deal with that... when I think back on how bad my life was pre-implant...It literally saved my life.

      Good luck. Don't get frustrated if it feels like it's not working as well at times. Sometimes it just needs a little tweaking.


      • #4
        Hi everyone! I had some questions for those of you with Interstim. I do not have IC, but have alot of urinary frequency. Thursday I had the Interstim trial surgery. Its only a 5 day trial period. I have two leads. One on my left in the pelvic floor region. The other is on my right and I feel it in my buttocks near my tailbone. Thursday I had no improvement with the pelvic floor region stimulation. So, Friday my rep told me to plug in the other lead that the stimulation is in my buttocks. I did that for half of the day and it didn't give me any relief. The stimulation after awhile actually made my buttocks tighten up and uncomfortable so I switched back to the other lead that has the stimulation in the pelvic floor. I don't know if the setting was too high or not (it was set on 2 and I could barely feel it) but I couldn't sleep at all Friday night. I felt like I constantly had a full bladder. It was very uncomfortable! Nothing relieved the sensation. Saturday afternoon I finally talked to my rep and he said to either turn the stimulation down real low or turn it off. I decided to turn it off for the rest of the night. I felt alittle better after awhile. Today, I changed the lead back to the buttock area because I didn't want to give up entirely. I still have no improvement though. I feel like I have to urinate all of the time. My questions are this: Did anyone else experience this? How long did it take to see some positive results? My rep said that people can usually tell a difference within the first 24-48 hours. I'm on day 4 and I go back to my doctor tomorrow. I am definitely not opting for a permanent as of right now. The rep also said that there was another procedure that my doctor may want to do. He didn't give me any specifics but made it sound like they would just put the leads in a different location. I'm not sure if I want to try that if the first one didn't work and actually made my frequency seem worse. Thanks for any response!


        • #5
          I felt better with my trial immediately upon waking from surgery. But, I will say, if the stimulation is up too high, it makes me feel worse. I would at least try turning it on the lowest setting or ask them to try adjusting the settings since you have come this far. I met with the rep about 6 or so times in the first year to make small adjustments.

          Good Luck!


          • #6
            Thanks jjmowen. May I also ask you where you feel the stimulation? I turned mine back on and hooked it up to the lead that is in the pelvic floor region. I have the setting really low on 1. I only turned it up to 2 or 2.5 before because I was told that if I don't feel the stimulation, then I need to turn it up.


            • #7
              Sorry, can't help interstim is 6 years old and there's only one lead at the sacral nerve. I don't feel mine at all unless I turn it off and back on....then I'll notice it for a while. I have the old unit, so I can't adjust mine as much. But I do know that how mine is adjusted can make a huge difference on how I feel.

              I wish it was working better for you. Maybe it would be worth you having a face to face meeting with the rep.


              • #8
                When I talked to my rep on the phone, he told me that since I was so uncomfortable I could turn it all the way down or off. There isn't really any tweaking you can do to the trial other than turning the stimulation up or down. There is only one other dial on it and it controls how fast the stimulation ("tapping") goes. He told me I could mess with that if I wanted to. He didn't seem like there was anything else that could be done. I'm so disappointed.


                • #9
                  Aww, I'm sad for you. It's such a big step, I can't imagine how I would have felt if it didn't work. If you aren't feeling better, I'm sure the permanent is out of the question.

                  Maybe your doctor will have some ideas.


                  • #10
                    I hope so. My rep said that there is another procedure that can be done. He told me briefly about it. Basically, they just put the leads in a different location...I think. Anyways, I will find out more tomorrow. Yes, I am devastated that this isn't working. Wish me luck tomorrow. Thanks for your feedback. I appreciate it so much!


                    • #11
                      I had my trial interstim put in Friday and I can already tell you it's working at this point!! I had some relief that first day, but after going through the entire weekend I can tell you this is definitely better!!!
                      I've been extremely sore, I mean VERY sore, to the point of crying in my bed every time I even moved in my sleep. Not just my back and hip where they made the 3 incisions, but my arms, legs, neck, head, shoulders, EVERYwhere!! I kept asking my family if they dropped me off the table in OR.
                      Last night I called for my surgeon and she called me back. I asked her if they dropped me and told her how bad I was hurting everywhere.
                      She said "we didn't drop you we tackled you and beat you up!!" Apparently she had told me about this but I had forgotten because I was still so sleepy. She said I came out of the anesthesia way faster than they expected and I was still face-down on the table. She said I came up fighting HARD and they literally had to tackle me. She said it took 5 people and they had to be way tough to keep me down.
                      So, she said the plan is to keep me well under until I'm on my back and then to reverse me a lot slower. She said sometimes patients who are on a lot of pain medicine react differently to anesthesia and that they thought they had accounted for it but I surprised them.
                      So now, knowing that I'm not gonna come out of there feeling like I'd been thrown off the table, I'm ready to go get the permanent implant.
                      I used to void an average of 36 times a day, then as few as 21-22 times a day immediately after getting spinal block, but that was only temporary. Now I'm down to 10-12 times a day!!!
                      And I'm not having to cath right now either!!! The pain has decreased, even though they told me not to expect pain relief, only relief from the frequency and retention. I'm just so grateful to have this done!
                      They implanted the permanent leads and tunneled them, right now they're hooked up to an external device. On Friday they're gonna open an incision on my hip to implant the battery permanently. I'm so excited!!!!
                      (formerly DonnaRenee1)

                      Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
                      Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
                      Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
                      I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!


                      • #12
                        That is so wonderful! It's such an awesome feeling to feel better isn't it?


                        • #13
                          Hello all
                          I am new to this site, kinda stumbled on it while researching. I had my permanent implant done on 10/26/2012..So far it has been amazing with my pelvic pain/vaginal pain/nerve pain(even though not approved for this) . I do have IC and endometriosis along with a multitude of different problems, had tried lots and lots of other treatments. I am so hopeful to be getting my life back (fingers crossed) everything continues to improve, only thing I have noticed is pain in the sacral area, have had to have incision dermabonded(?) again, and weird feeling in my left leg. Will have to try the different settings. Congrats to all and wow Daisy mae . Thanks for listening



                          • #14
                            Re: Interstim is working!

                            Hi Ladies

                            Can I talk to someone who has the interstim and it helps with pain?
                            I am having it done in a few weeks and scared to death.

                            I have had IC since January 2015 and mainly with pain / burning / warm feeling in bladder / discomfort.

                            Currently: Elmiron 4x100mg, LDN 4 mg at night, antihistamines

                            Tried and didnt work:
                            Meds; Uracyst, DMSO, Gabapentin, Cyclosporine A, Amitriptyline, hyperbaric oxygen chamber 40 x sessions, high dose long term antibiotics (8 months)

                            Naturals; Colostrum, DH Aloe vera, acupuncture, MSM, Glocosamine, Homoepathic treatment, marshmellow root, chinese herbs, IALURIL, Gotu Kola, D Mannose.


                            Please find a cure - so many are suffering


                            • #15
                              Re: Interstim is working!

                              Originally posted by Mariamagnolia View Post
                              Hi Ladies

                              Can I talk to someone who has the interstim and it helps with pain?
                              I am having it done in a few weeks and scared to death.

                              One thing you could do is to go to the interstim board and scroll down and change the time option to a longer period so you'll see more posts.

                              Stay safe

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