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Interstim trial starts Wednesday :)

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  • #1

    Interstim trial starts Wednesday :)

    Hi guys,

    I start my trial week on wednesday. I asked my doctor about the pain associated with the lead coming out from your back and she said her patients haven't really complained of very much pain from it. I am wondering what type of pain has occurred with any of you with just having the lead coming out of your back. I expect to be in pain from the second surgery, but I'm not too sure what to expect from the first. I am very worried and excited all at the same time. I am only 24, and I have severe IC, which has dramatically worsened after having my son in July. It has been such a struggle with pain, frequencey, urgency, and at the same time retention. Sometimes I have to sit for like 10 minutes before I am able to pee. I have had to make up bathroom games to keep my son occupied while I am sitting trying to pee. Its ridiculous and miserable. I am hoping the interstim can help. Please share any of your stories with me.

    Anne
    I am the mother to my beautiful son Parker Thomas.
    I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
    I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
    There is always something beautiful around you, sometimes you just have to look for it!
    Tags: None
    • #2
      i was just curious how your Interstim trial went and if you decided to proceed with the implant?

        Comment

        • #3
          Sabrina,
          My trial went GREAT! I went from peeing every 20-30 mins to peeing every 2-3 hours. It has made the biggest difference! Today was my surgery to have the generator implanted and everything went really, really well. I'm home now and controlling the pain with Percocet. And still kinda waiting to see if it will work as well as the trial. The lead that was uses in the trial actually had to be replaced and put in a new location because it was affecting the muscles in my right leg and foot. Other than that ecverything has been wonderful! I LOVE it! Except sometimes it kinda shocks the crap out of me, but I am still getting used to working the settings and whatnot. Thanks for asking. Are you considering it?

          Anne
          I am the mother to my beautiful son Parker Thomas.
          I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
          I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
          There is always something beautiful around you, sometimes you just have to look for it!

            Comment

            • #4
              Anne, I hope it's still working well for you. I am getting desperate for some help, so starting to research this product. Please let us know how it's going!
              Conditions:
              IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

              Medications
              Elmiron 3x day
              Trazadone at bedtime
              Tramadol as needed for pain
              Monthly B-12 injections
              Continuous Birth Control (even though I had a hyst, to control cysts)
              heating pad, hot epsom salt baths, strict IC diet
              Interstim implant 9/11
              Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

              Failed Bladder Treatments
              Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                Comment

                • #5
                  Great success

                  Hey guys, I just wanted to let you know that my interstim is working wonders!!!! It is one of the best decisions I've ever made. It truely has changed my life. I went from urinating 30-50 times per day, to maybe 5 or 6. Im not going to lie, the whole process was rough but I'd do it all over again in a heartbeat!
                  Anne
                  I am the mother to my beautiful son Parker Thomas.
                  I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
                  I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
                  There is always something beautiful around you, sometimes you just have to look for it!

                    Comment

                    • #6
                      Hi Anne,
                      So glad to hear you are doing well! Thank you for posting - it gives us hope to hear when things work!! Keep us in the loop, ok?
                      Kadi

                      -------------------------------------------------------------
                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      ------------------------------------------------------


                      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                      Source - Pinterest
                      "

                      Current treatments:
                      -IC diet
                      -Elavil 50mg at night
                      -Continuous use birth control pills (4-5 periods/year)
                      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                      -Pyridium if needed,
                      -Pain medicine at bedtime daily, as needed during the day several times per week
                      -Antibiotic when doing an instillation to prevent UTI
                      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                      -Dye Free Benadryl 50 mg at bedtime
                      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                      -Managing stress= VERY important!
                      -Fur therapy: Hugging the cat!

                        Comment

                        • #7
                          Kadi,
                          I completely understand. Though the interstim went well, each day is still a struggle. I do the daily installations at home, and still suffer with chronic pain. The only difference is that i pee less. Still have all the other problems, but at least the interstim eliminates one of them. Pain, fatigue, pressure, depression, etc, plus overall body pain with the fibro, keeps me pretty busy just in taking fare of myself! Not to mention my toddler. I just keep putting one foot in front of the other, which is very hard to do some days. And some days I just come to a. complete hault, as I'm sure the rest of you do as well. I just wish there were some way out of this. I think I need to move over to the depression board bc I've been so down lately in case you can't tell. Let me go see what's going on over there. Lol
                          Anne
                          I am the mother to my beautiful son Parker Thomas.
                          I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
                          I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
                          There is always something beautiful around you, sometimes you just have to look for it!

                            Comment

                            • #8
                              Hello! Well I had my trial and it went ok, good enough that I've decided to go through with the permanent implant, although I'm hoping for better results than the test.

                              I am nervous about the surgery. My trial was WAY more painful than I ever expected (right side implant site pain so bad my husband had to roll me over in bed and help me get up and down from sitting). Since the trial gave me so much pain, I am wondering what to expect with the permanent device. Any advice? How long were you off work, or restrained from normal activities?

                              Thanks in advance, it's so nice to hear from people who have gone through this themselves!
                              Conditions:
                              IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

                              Medications
                              Elmiron 3x day
                              Trazadone at bedtime
                              Tramadol as needed for pain
                              Monthly B-12 injections
                              Continuous Birth Control (even though I had a hyst, to control cysts)
                              heating pad, hot epsom salt baths, strict IC diet
                              Interstim implant 9/11
                              Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

                              Failed Bladder Treatments
                              Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                                Comment

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