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Is there any new updated information that is positive about this device?

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  • Is there any new updated information that is positive about this device?

    Most of the posts about this device are from 2006.

    My urologist was not impressed with this device back then either.

    It's now ten years later and it's been improved and changed in several ways I'm sure since then.

    Has anyone gotten it recently and did it only help with their urgency/frequency issues or did it also help with some of the pain (even if not all of the pain).

    What then is best to deal with the pain, still using medications like Uribel or just general pain meds like naproxen sodium?

    Basically I'm asking if anyone has gotten the implant and had positive results all around or if it was still a disappointment in some way.

    Thank you

  • #2
    Re: Is there any new updated information that is positive about this device?

    Are you talking about Interstim or another device?? Overall, it's hit or miss with some significant long term issues with respect to complications, cost of care, finding doctors who will maintain it if you change insurance, etc. etc. SNS is a Step Four Treatment Option for IC... which means you should have done Steps One through Three. And, then even so, there is a less invasive form of SNS known as Urgent PC that does not involve surgery nor have significant side effects. You might want to read up on that first. It's what we always suggest to patients contemplating any neuromodulation procedures.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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    • #3
      Re: Is there any new updated information that is positive about this device?

      Sorry I typed up a reply yesterday and ended up clicking on the reply to thread which erased everything instead of posting it as a reply like the post quick reply button does.

      Anyway my new Urologist only said it was a pacemaker for the bladder and that it is connected to the sacral nerve. She didn't use the term interstim so that's why I was asking if it was the same thing.

      I have no idea what the 4 stages you are suggesting are exactly but I'd been living with this condition for nearly a decade mostly untreated and it had gotten so bad that when I did have the endoscopy the first urologist found two Hunner's Ulcers that he was so concerned about he biopsied and was surprised there was not any necrotic tissue found. Given that my bladder was in such horrible shape my new urologist (who was called while I was under anesthesia and the first urologist was looking at the Hunner's Ulers), did not recommend that I have any hydro distention because it would likely make my recovery from the Endoscopy much harder. As it was it was several months before I had healed from that enough to say I was back to where I was prior to doing it.

      As far as what medications I've tried so far, I take URibel 4 times a day and Elmiron 3 times a day, I take Elavil 35 mg most nights but 50 if I know I can sleep in the next morning. I take Valium 3 times a day usually only 2 mg doses during the day and a 5 mg dose at night. And I take naproxen sodium if I feel any other throbbing/pain as well. I already take Allegra for allergies both seasonal and dust, and I have been treated as having Endometriosis for about a decade as well by taking my birth control pill continually active only without taking inactive pills save for a few times a year. The less that I aggravate that the less likely it will trigger my IC to flare as well. In addition it's likely I have IBS and so I was taking a stool softener to avoid being constipated but it was not having as helpful of an effect as I'd like. I take Prelief with everything I eat, and I am avoiding artificial colors and flavors and preservatives as much as possible and lots of spicy/acidic foods but probably not following the diet to the letter because it's pretty clear my strongest trigger is stress and I live a very stressful life. I am the one that holds a household of 6 together when all of them have some form of mental illness or intellectual disability (anxiety, depression, ADHD, Autism, PTSD). The youngest in the household is 11 the oldest is 45, we are essentially two families that have combined forces to so speak. I obviously haven't been capable of being in the workforce for quite some time, but I do have a degree in psychology and I'm very good with kids, so I have been the caregiver to the youngest two children in the household for nearly 5 years. In all honesty, adding all the work for going very strictly by the IC diet, would mean cooking separate meals for myself and the rest of the family and adding more work and stress and probably take away from the time and effort that I also need to give to them because I already have them as a responsibility. Not legally but ethically when I tell a child I will be there for them I am going to follow through with that.

      I will read up on Urgent PC. But I know that both my new Urologist who at this point has been so much more helpful than the first one was, and my Physical Therapist for the pelvic floor dysfunction problems both highly recommended the device because my whole situation is so complex. I'm also planning on starting either Yoga or Tai Chi very shortly to try to reduce my stress levels but a lot of my stress comes from outside the home in dealing with the other parent of the two kids that I take care of. I get extremely emotional and stressed when someone sabotages or blocks me from being able to do my very best for them. And that has happened a lot and obviously I get very discouraged and irritated when I have to keep redoing the same work over and over again, whether it's having to reassure one of the kids with anxiety that he is safe or getting the other one back into a groove of having a work ethic that includes stepping a bit outside the comfort zone and coping with it. She spent the first 8 years of her life with adults that did not give her enough credit or challenge. She's Autistic, she doesn't have a high IQ so you can't classify her as high functioning, but she was basically being led everywhere by hand and never taught how to do things for herself because it was more trouble teaching her how to than to do it for her. And that's not fair to her and not fair to whoever then ends up having to be her caretaker later when it's much harder for her to learn skills. Her parents won't be around forever and therefore it's in her best interests to be given as much help to be as independent as safely possible and not teaching her basic things like how to button her own pants or cross a street safely by that age was neglectful and selfish.

      Sorry that turned into a rant but like I said I get very irritated, and I'm passionate about the people that I love, so what I would say is that where you may say I should have tried a whole myriad of things before thinking about this device, everyone else is telling me my situation is so complex that it warrants a higher level of care.

      Thank you for the advice so far.

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      • #4
        Re: Is there any new updated information that is positive about this device?

        I had a follow up with my Urologist. My physical therapist discontinued our treatment visits both because she felt we'd made quite a lot of progress and because she didn't want to use up all my covered visits in case I should need them after a problem later in the year or have a completely different need for physical therapy in the future. Unfortunately I found out at my Urologist visit that physical therapist left the hospital where I was being treated by her. When she is working elsewhere hopefully I can find that out and know how to reach her so that if I need her care again I can get it, hopefully with the same insurance plan.

        We decided that basically I could try either the 1 week trial of Interstim, she could send me back to another psychical therapist to continue working on that for my urgency OR we could use Botox treatments, she mentioned briefly that we could try to do the hydrodistention but immediately both agreed that stretching out my bladder usually just results in it feeling much worse and tender and with me having worse symptoms for a few days later, so it's unlikely it would help. Of those options I decided Interstim was probably the best thing to do since I can do the trial basis first and know whether it helps me at all, only with my urgency problems and whether or not pain is still an issue. Unfortunately I have to go without any of my go to pain medication Aleve which means any pain from the multiple cysts on my ovary, cervix and in my breast I will just have to deal with for a week prior to the interstim trial. I thought possibly i could use a different pain reliever like percocet but when I called the office they said that no all pain meds have to be stopped a week prior to getting the interstim device. I hope she's not too disturbed by how much pain I'll be in when she sees me later this month. The interstim date would then be on 8/1. Thank you for your input and I will be sure to update with any news after I have the trial about whether it seemed to have an effect or not.

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