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  • Interstim research study

    Has anyone here ever participated in a research study for the Interstim?

    I have been contacted by my doctors office about participating in a study but I am just not sure about doing it. The study puts you in one of two groups... one group gets the interstim right away...and the other group takes 6 months of medication and then the interstim.

    I am just not sure if I want to participate in the study. The money that you are compensated with really only covers your deductible for the surgery. You are responsible for paying for medications and for everything else. The study also lasts for 5 years.

    Has anyone has any experience with this?
    [SIZE="1"]
    I've tried:
    Ditropan
    Detrol LA
    Levbid
    Prelief
    Elmiron
    Elavil
    Vesicare
    Cystoscopy/hydro
    Sanctura
    Enablex
    dmso and heparin instills
    Interstim

  • #2
    If it would have been an option I would have given it a try.
    They did not offer it anywhere close to me.
    Whatever you decide good luck and I hope you find relief!!
    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

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    • #3
      I have had my interstim since 2002, so it was still just the last resort thing to do. Even though I am doing very well with mine, I think I would still rather go through the meds route first. I only say this because the doctor that put mine in was trained very well and did all my adjustments at any time I needed it. It never occured to me what would happen if she moved, which did happen 3 years later. I have only needed a couple of adjustments since she has moved, but getting those adjustments wasn't easy. We only have a rep that works a region so he is only in my city maybe 2 times a month. When I have an adjustment, I normally had to have it tweaked for the next day or so. Now I can't do that as easily. A doctor in my uro/gyno group does have his "own" computer to do adjustments, but is wasn't available the last time I needed my adjustment.

      Going through that a few weeks ago, it made me wonder how many people have doctors that do the surgery, but don't do the follow-up care. I think that is why I had so much success with my stim because Dr. Doggweiler always was available, so I had many adjustments in the early part of my implant.

      Sorry to jabber, just a thought.

      T

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      • #4
        Do your own research on this before you decide. The one thiing that you should remember is that Interstim is an invasive procedure and not everyone has good luck with it. In fact, it has caused people trouble.

        It is suppose to be a last resort treatment option. So read up on it, check the good outcomes and bad outcomes and then make a decision based on that.
        Jolene

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

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        "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."

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        • #5
          Usually when clinical trials are done, related treatments and medications are covered. I agree with Jolene --- do some research before you make the decision. The interstim is almost always considered a last resort --- after all other treatments have been tried and failed.

          Donna
          Stay safe


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          [3MG]

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          • #6
            Interstim made me feel worse

            Think long and hard and then don't do it if you can survive without it. As a last resort (after a morphine pump failed) I tried it. The result after a yr of adjusting working w/the rep, was to give up. It caused me more pain & frequency than I had without it. Now I will never be able to have an MRI because paddles connected the wires to the sacral nerves and it's too dangerous to have them taken out. I was so desparate for pain relief that I've found now with rescue instillations.

            Be extremely cautious and realize the longer you wait the more likely that there will be improvements.

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