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Interstim was a Miricle for Me!

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  • Interstim was a Miricle for Me!

    I am 25. I was diagnosed with IC in Jan 2001. I had had it for 6 months at that time. I have tried many things.These all before the implant. THe things that DID NOT help me were, Elmiron, Imiprimine, DMSO ( made me so bad I wanted to die), Ditropan XL. The things that helped a little were, appell cocktails you put directly into your bladder. The things that helped before and after were. A very STRICT DIET, all organic. ONly drink organic milk, only water with a PH of 7 (Evian, Crystal Geyser, most spring waters) Dasani actually has potassium in it so watch out). I don't eat anything with a lot of acid. Organic meat is a big one! I also take Freeze Dried Aloe vera. I had my interstim implant in July 2003. The doctor who did it. Not only diagnosed me with my muscle disease MPS, PFD, and IBS but he also said he believed that my IC was caused by a birth defect I have. Sacralization of the L-5. Because of that my nerves never developed properly. I have a partial sacralization as well. That is not good. So if the problem lies in the nerve paths then it makes sense that a deep stimulation of the nerve would help me. AND IT DID. Interstim was a miricle for me. It changed my life. About every 6 months or so I have to change the way it stimulates the nerve for it to work properly. Because your bladder gets used to the impulse and it won't TRICK it anymore. I also must say I don't believe that the interstim alone would have helped me. If I didn't follow my diet and take the aloe I believe it would be ineffefctive for me. I had a very good doctor do the implant for me. He had done hundreds when he did mine and he also gave me other patients to call of his that had had this done. I also give my number out to other patients of his to call me. THe only time the interstim doesn't help me if, food bothers me for some reason beyond my control. More acidic that usual or etc. Or if I have another problem in my body. IE when i had appendicitis and my ovary was twisted, But after the surgery it was fine. When I have an infection in bladder or kidneys and when I have sever constipation. Also if my body is stressed. But I believe it would be twice as bad without the implant. Please anyone curious about the implant or anything else. Please talk to me, email or whatever. I believe the most important thing is, that a variety of things work for people. If you are strict to begin with then you can slowly get less so. I know that the interstim therapy has hurt so many people and they have had drs that didn't do a good job. It makes me sick. I also have other health conditions. I have CMP disease and am almost always home ridden and use a wheelchair because of it so I can lead as pain free a life as possible. I am in constant physical therapy and am very blessed that I have a husband who is supportive and loves me with all of these challenges. He fights for relief of pain with me. It can be so challenging at times. I almost feel like two separate people sometimes. I love my life in one way and strive everyday to be who I would be reguardless of my health stuff, but I also grieve the loss of my independace, my violin performace stuff, being able to go out and play volleyball and anything. JUST TO WALK! I will fight for that till the day I die. I am in no way telling people that there is only hope through interstim. But it sure helped me. I believe all the treatments for IC are this way. Some of the things I have tried, DMSO for example made me so bad for months. Some of the medications have made my life horrible for weeks. My different health problems seem to aggrivate the other! GRRR. LIke I said ASK LOTS OF QUESTIONS! Find a DR who is supportive of the chronic nature of you health challenges.
    Last edited by BrookeB; 03-15-2007, 07:03 PM.

  • #2
    Brooke, Soon I will have my trial, on 3/20, I'm excited and nervous. I am listening to replies on ICN. My problem is "only" constant leakage, like it starts immediately when I have an urge to go. It's not new to me, bladder repair 15 years ago which didn't help, lots of different meds all not a happy fix, bio feedback, which helped my mind but not the leakage. There is no one to talk to in my town, the word interstim is not in anyone's vocabulary here in the country. But my GP sent me to a specialist, 40 miles away. He has treated me for one year and I am now at the stage to try this new plan. I do not have any bladder pain, and am grateful. Sue