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  • Interstim or not?

    I am scheduled to do the phase I of the interstim process next wednesday (11/19). I just wanted to get some input from others. My doctor assures me that this is for pain too. I read many posts from here and elsewhere that say otherwise. What is your opinion? I had the hydro and distention done about a month ago. Tried Elmiron with massive side effects beginning with the first pill. Tried them without the capsule as well. Still had horrible migraines. Couldn't manage with 3 kids and no hubby around most days. Is it typical to go right to the interstim? My uro thinks this is the best route next. I do have the urgency/frequency issues as well. Pain is my primary symptom, though. Do you think I should go ahead and start the process or maybe get a second opinion? Thanks so much for taking the time to read and respond. I am still so new to this horrible IC world. Very thankful for you all though. I read the site boards daily. Thanks.
    Heather

  • #2
    I absolutely think you need a second opinion!! I do have the interstim, and it is not for pain in any way shape or form, some have had the luck to have helped pain, I assure you most of us do not have pain relief. Have you tried other meds, anti spasms, hydroxizine, flexeril, ambien, antidepressant? I suggest looking deeper into other practical methods before you jump into a surgery.
    good luck Dear.

    Comment


    • #3
      I have to agree that a second opinion is a good idea. It's a common opinion in the IC community that the interstim should not be tried until many other treatments have been tried and failed. Also, even the company will not say that it is for pain. A few have reported this benefit, but most just find it helps with frequency.

      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
        I think it would be better for you to put the interstem trial on hold and seek another opinion.
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        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.

        Comment


        • #5
          I too agree a second opinion is a must - especially for an invasive procedure etc.
          Hugs,
          Tracey
          How do you eat an elephant? One bite at a time...

          Harry arrived 2/23/09!



          *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.

          IC Diet Cheat Sheet:
          http://www.ic-network.com/diet/2009icdietlist.pdf



          Dx's:
          IC dx'd Nov 2004
          Lymphocytic Colitis dx'd July 2005
          Possible IBS
          Current IC Meds
          Vistaril 25mg in the evening
          Previous IC Meds taken:
          Cystoprotek - 2 caps 2x's a day
          Elmiron, 100mg 3x's a day
          Ditropan, 5 mg 3x's a day
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

          Comment


          • #6
            Thanks for responding. Does anyone know if I have to have my current urologist send all the records, or do I just make an appointment with a new urologist and say, "I have IC diagnosed by the hydro and distention..." I would love to find a closer uro too. Mine is about 45 minutes away. If I end up having instillations and further treatment, it would be great to find something closer. I was just wondering if I could actually make the appointment without my records transfered over. Sorry if it sounds confusing. I am confused. I wish I had the magic answer.

            Comment


            • #7
              Well, you could talk to your GP or the doc that referred you to your current uro, and tell them you want to get a second opinion, do they know of someone etc, or like I did with a gastro - I told my doc I didn't like the one they originally sent me to, I did some research and found someone else I'd like to see, would they please refer me - she had no problem with that. Once you get an appt, I would imagine they'd let you know if they need to get your records etc. I know that when I saw the gastro, he'd already had my records from my referring doc, but there were some others that they needed (like from my other doc when I had a colonoscopy) so while I was there I filled out the paperwork they needed to request them. (Ironically the gastro I didn't like didn't even seem to care about my records, wanted to put me through invasive tests I'd just had done recently! GRRR!)

              I guess it depends on the doctor and their procedures for their practice etc. on how they'd obtain your records etc. But I think you'd be able to make your appt first - referral or no referral if it's not needed, then go from there - they'll let you know. I am sure others will chime in with their experiences too!!!
              Hugs,
              Tracey
              How do you eat an elephant? One bite at a time...

              Harry arrived 2/23/09!



              *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.

              IC Diet Cheat Sheet:
              http://www.ic-network.com/diet/2009icdietlist.pdf



              Dx's:
              IC dx'd Nov 2004
              Lymphocytic Colitis dx'd July 2005
              Possible IBS
              Current IC Meds
              Vistaril 25mg in the evening
              Previous IC Meds taken:
              Cystoprotek - 2 caps 2x's a day
              Elmiron, 100mg 3x's a day
              Ditropan, 5 mg 3x's a day
              Others:
              Wellbutrin 150mg 2x's a day for Anxiety/IBS
              Pepcid 40mg a day for GERD
              Zytrec for Nasal Allergies
              Align Probiotic daily for IBS

              Comment


              • #8
                The second opinion doctor will probably want to see the reports from your testing. Please don't be concerned about it --- you might even want to personally tell your doctor that for such an invasive procedure you'll feel more comfortable with a second opinion. No physician will object to that --- many will actually recommend a second opinion and some insurance companies demand it.

                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


                • #9
                  It looks like the others have given you great advice already. Interstim is normally used as a last resort only. It is not used for pain normally. I would most certainly try to talk with your dr about your concerns or get another opinion with several different urologists.
                  Good luck to you!
                  Current diagnosis
                  Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
                  Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

                  Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
                  Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
                  Interstim implants--8 plus surgeries for them.
                  I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
                  One day at a time

                  Comment

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