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  • #1

    Removal

    Friday after having the interstim for about 8 years, I am having it removed! My adrenal glands hut down and I have to have an MRI. Not only for that reason I have gained weight, and the replacement was really never much of a help. I had that done it 7/06. For some it works great, It did for me for several years as a god send. But the pain up my leg and spine are not worth it, nor was going thur er 3 weeks ago to be told it is not stones, it is probably fibro, and I asked can it be the stim, and got oh yea it may have caused nerve damage Then my GP said the same thing. It is coming out regardless. Not to sure if I was a success gone bad, or a success that caused problems, and needed a revision, but cant do that cuz I need the MRI!
    'The will of God will never take you where the Grace of God will not protect you.'
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  • #2
    Good luck with the removal, sweetie. You are in my prayers.
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*

    Comment

    • #3
      I'll be thinking of you and hope the procedure goes well.

      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

      • #4
        Sorry you are having to go through this.

        With it out you will be able to tell if it was helpping at all.

        You really do need the MRI to figure out the adrenals so you can deal with that, it has been going on way too long.

        Did you know pre stim it could cause nerve damage, I would ask on the boards how many other people that has happened too.

        Good luck MG
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment

        • #5
          I had

          I had my interstim removed on Monday! It was put in in December of 2006, and that one rolled and wrapped around me battery, they replaced it in December 2008. It was originally implanted for pain. I was told by the original Dr that I would be pain free in three days. I was having no success with the implant for pain or urgency or frequency. So I went to the Dr and told him I wanted it removed, and they finally got me in on Monday.
          The recovery is really kicking my butt (no pun intended). LOL! I have an allergy to tape and they have covered my incisions with those clear square cover up bandaids. They are driving me crazy with itching!
          The pain is still pretty bad too, I am not sure how long is too long for the pain to keep being there.
          I hope your removal goes well and that you have a quick recovery!
          Kirsten
          Started Vaginal Valium Suppositories April 2014
          Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
          Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
          Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
          Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
          Interstim repair December 2008,Removal of the Interstim August 2011,
          6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
          Diagnosed with Raynaud's Syndrome November 2013
          Ambien 5mg for sleep.
          Elivil 50 mg at bed
          Lisinopril 20mg in AM
          Effexor 225 mg
          Oxycodone 10 mgs 2 x a day for pain
          Baclofen 20mg 3x a day
          Phenazopyridine 200 mg as needed
          Omeprazole 20 mg at night
          Lyrica 450 mg daily
          Requip .50 mg at night
          Ketorolac 10 mg as needed for migraines

          Comment

          • #6
            You with be in my thoughts and prayers.
            Frances

            Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

            Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

            Other conditions: Migraines, allergies, mild IBS.

            "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

            Comment

            • #7
              I definitely understand about the tape! I'm extremely sensitive to tape, especially those clear things they stick over incisions.

              I hope you recover quickly and can get rid of the tape.


              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

              • #8
                a quick update. I feel much better with out the stim, my frequency is rough, and my urgency is so very extreme. I am dealing with all of that right now and some extensive family issues. I am sure that has played a part. I am doing instills and that has helped greatly. I get phantom pain in the area where the stim caused pain weird as it sounds, it happens. I also no longer get leg cramps that had kept me awake for countless hours when the stim was in. Happy to report they are gone. After an extensive jump in my synthroid ( 25 to 125) my body started producing cortisol again, and my adreanal glands are working again, I have went from 209 to 186, and if my scale is correct I and now down to 176. It was a rough way to go being 140 and jumping to 209 in a mater of 5 months. Finally on the road to recovery with all this.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment

                • #9
                  I am so glad you are doing better now. It sounds like your weight is on the way down and that will help you feel better too!
                  Jolene

                  "Life is what happens when you are making other plans" John Lennon

                  IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                  Information for Patients can be found here.
                  http://www.ic-network.com/patientlinks.html


                  Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                  Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                  "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

                  Comment

                  • #10
                    Thank you for the update! I'm glad you are doing better and hope you will find even more relief to come Sending a hug and prayers for peace in your family. As tough as your situation has been, you've done the right things for your children and that is something you'll never regret. And as a teacher, I appreciate you and others like you so much!
                    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

                    • #11
                      Glad you found the path you needed. Hope you can find a path the frequency and urgency easily!
                      Faith, Hope, and Love,
                      Katrina

                      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      or find me on facebook http://www.facebook.com/kat671?ref=profile
                      Be the Miracle! & Pay it Forward!
                      [email protected] please contact me...I am here to help!

                      Comment

                      • #12



                        So happy this is working for you!

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