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  • Spinal Cord Stimulator

    I had a spinal cord stimulator implanted by my pain doc. He's one of the best and travels the world to teach on this procedure. I am amazed!!!!!!! My life is finally back to normal!

    The interstim has only 4 leads...this device has 16. I have a very severe case of IC and have been housebound for nearly 7 years or so because of it. I rarely leave the house because I was peeing over 100 times a day and in constant pain. I spent many days laying on the bathroom floor crying.

    Now I am going peeing around 10 times a day and the pain has decreased a lot. I'm so excited and was scared to death about doing it. I finally decided to try it...and damn I must admit the trial was so painful. I cried for 2 days straight because the entry point is so sensitive (near tailbone) and I had a lot of scar tissue. I wish to God I had done this years ago. My life is totally different now and IC is NOT controlling my life. I am!!!!!!!!!

    I just wanted to share my story. It's been a life changer for sure. I'm happy again and not a prisoner in my own home.

  • #2
    Did you try the Interstim first? Just wondering because my Interstim trial don't work. My URO mentioned it yesterday, but it would be later down the road. Your input would be appreciated!!
    Diagnosed with IC in May 2011

    Current Medications:
    Elmiron 400 mg daily
    Imipramine 75 mg daily

    Comment


    • #3
      No, I never tried the Interstim because it only has 4 leads. The spinal cord stimulator has 16. I had the trial removed and I'm waiting now for the implant. I'm in IC hell again My urologist told me to go with the stimulator because she said it works better than the Interstim because it has so many more leads on it and you can really tweak it. I am really excited about getting the implant. It's going to change my life!!!!!! (I'm homebound a lot....I have a severe case )

      eta: in my original post I don't think I mentioned I was doing the trial for a week. It was great! 2 days later after removal I was back living on the toilet with constant bladder spasms

      Comment


      • #4
        Well, I am so happy that this has worked for you! I don't know much about it, but would like to research it. Did you get results immediately? When can you have the implant done? How long is the waiting list?
        Diagnosed with IC in May 2011

        Current Medications:
        Elmiron 400 mg daily
        Imipramine 75 mg daily

        Comment


        • #5
          I Have been offered spinal cord stim by U of MI for pain . Not because I have high doses pain meds opposite so sensitive to meds sleep and fatigue. i am RN so I know quite bit of these implants as I recovered pts who have them put in for chronic back pain it works for them too. Boston Science is who U of MI uses yes it is more leads. Now at U of MI anesthesia MD puts trial in and yes my professional opinion from day one even on interstim neurusurgeon puts in final implant. Well been offered both was going to go with stim as I have low bladder volume but hydros are helping me only get up 2s night but pain bad bad PFD pain and VV would LOVE to come off of my ms contin. Oh would be dream come true if I could some off ms contin and go back to work but reality is my iC MDs say no too hard to come off of SSD you go back to wrk fail and have to try get ss back my MD said good luck . Will be seems uro, anesthesa MD my uro needs lead me which is best for my situatuon . Yes like you bedridden oh thanks for sharing. I posted yr ago last july got no response thnks for your reply and info .Did I just see you are on no pain meds wow enjoy

          Comment


          • #6
            Originally posted by KristinKathryn View Post
            Did you try the Interstim first? Just wondering because my Interstim trial don't work. My URO mentioned it yesterday, but it would be later down the road. Your input would be appreciated!!
            MAY i ask did it take you years to get diagnosed as I see you had interstim put in within they first year. So confused you dont have interstim put in t all

            Comment


            • #7
              I just had Interstim placed Friday. This is the trial, actually the "staged" one. The leads are in, and will stay in. I have an external remote that is connected to the wires. I will go back in this week to have the permanent battery pack implanted.
              In May of 99 I had a spinal cord stimulator implanted and kept it in for over 2 years. In 2001 I was having problems with some scar tissue around the battery pack in my right rib cage, and my IC was asymptomatic so I had it removed. I regretted it instantly!!! My IC has been giving me fits ever since, and has gotten worse over the past year.
              I think this Interstim actually is working better than the original SCS. Just this past month my voiding has gone from 22-38 times per day to about 10 times per day. That is a HUGE deal!!! Also, the pain levels have decreased dramatically.
              One thing I have noticed is that the relief and/or pain is positional, just like I remember it being the last time. When it flares up and I start feeling some pain or twinges, I just lie down and get into a comfortable position and turn off the remote and back on and a tiny bit of tweaking it gets me feeling better.
              I'm not ready to do anything crazy like going back to work or even driving a car or going to the grocery store and doing my own shopping. Heck I won't even go out into the yard alone, still too hard to get around. But... I have high hopes that this improvement will continue to get better. For the first time in a long time, I feel encouraged and I'm excited about having an actual future. IC had stolen that hope away from me and now I've gotten it back. God has truly been good to me!!!
              (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!

              Comment


              • #8
                Re: Spinal Cord Stimulator

                I know this is a super old thread but I was wondering if anyone knows if salsa is still active on the forums? I am interested in learning about what doc who does a 16 lead neuromodulation device. I am considering scs for constant bladder burning that worsens with bladder filling, and for pfd pain. Thanks for any leads to learn about scs for ic pain And what doc does the 16 lead device!
                How it started: Confirmed UTI in summer 2013 that lasted 4 months due to poor medical care abroad. Once back in US biopsy showed some inflammation but nothing remarkable

                Diagnoses:
                IC based on symptoms, PFD, Pudendal Neuralgia (based on nerve blocks), Chronic Pelvic Pain

                Symptoms: Constant burning bladder that worsens as bladder fills, Constant stabbing/throbbing pudendal pain, Pelvic floor tightness and pain, Urinary hesitancy and difficulty emptying fully, Bloating and increased pain based on hormones

                Past Treatments: Acupuncture, Diet change (NO effect), Elmiron, Supplements, Many meds, DMSO, Lidocaine instills, Pelvic Floor injections, Hypogastric Plexus Nerve Blocks, Pudendal Neuromodulation

                Current Treatments: Instills, Gralise ER, Baclofen, Valium, Elavil, Cytotec, Pudendal Nerve Blocks, Yoga, Pelvic Floor PT, my doggies

                Future Treatments:
                Hydro, Cyclosporine, Radiofrequency ablation (Pudendal Nerve)

                Comment


                • #9
                  Re: Spinal Cord Stimulator

                  Originally posted by LaVessie View Post
                  I know this is a super old thread but I was wondering if anyone knows if salsa is still active on the forums? I am interested in learning about what doc who does a 16 lead neuromodulation device. I am considering scs for constant bladder burning that worsens with bladder filling, and for pfd pain. Thanks for any leads to learn about scs for ic pain And what doc does the 16 lead device!
                  She hasn't been on the forums since October of 2012.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  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.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Re: Spinal Cord Stimulator

                    Originally posted by LaVessie View Post
                    I know this is a super old thread but I was wondering if anyone knows if salsa is still active on the forums? I am interested in learning about what doc who does a 16 lead neuromodulation device. I am considering scs for constant bladder burning that worsens with bladder filling, and for pfd pain. Thanks for any leads to learn about scs for ic pain And what doc does the 16 lead device!
                    Hi! I just came back the other day. Wow I didn't realize it had been so long. I had my SCS put in by my PM doc but had it removed Tuesday. It didn't end up working out

                    * I had a name change due to not remembering login info and I could not retrieve it since it was an old email acct I had signed up with. I don't know if admin can switch me to one name?

                    Comment


                    • #11
                      Re: Spinal Cord Stimulator

                      I am currently going thru the trial of the Spinal Chord Stimulator and so far it's just made me want to scream. I got it on Wednesday and can't wait to go back Monday and have it removed. I've had a lot of injection site pain and burning and the "programs" are not in the right areas, so for me this has been a huge fail. But I had to at least try it, when you live in pain 24/7 you'll try just about anything.

                      Comment


                      • #12
                        Re: Spinal Cord Stimulator

                        Originally posted by candylea View Post
                        I am currently going thru the trial of the Spinal Chord Stimulator and so far it's just made me want to scream. I got it on Wednesday and can't wait to go back Monday and have it removed. I've had a lot of injection site pain and burning and the "programs" are not in the right areas, so for me this has been a huge fail. But I had to at least try it, when you live in pain 24/7 you'll try just about anything.
                        I'm so sorry this didn't work out for you.


                        Donna
                        Stay safe


                        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                        Have you checked the ICN Shop?
                        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                        Patient Help: http://www.ic-network.com/patientlinks.html

                        Sub-types https://www.ic-network.com/five-pote...markably-well/

                        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                        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.
                        [3MG]

                        Anyone who says something is foolproof hasn't met a determined fool

                        Comment


                        • #13
                          Re: Spinal Cord Stimulator

                          Thank you Donna~me too

                          Comment

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