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Is Interstim for pain control??

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  • jen74
    replied
    Re: Is Interstim for pain control??

    Interstim does Not work for pain. a couple years back my Urologist referred me to a doctor who did Interstims, well he did the surgery to put them in. He told me right off the bat that interstim is Not recommended for those who have pain as their main issue. It does not help with pain, it works on urgency and frequency. I just saw another urogyne not too long ago just to see what other things they have come up with since I last saw a specialist( I have tried everything and am still suffering). He mentioned the Interstim as well. I told him that I was told that Interstim does not work for pain. He said, usually it does not but he was just throwing it out there because I have tried so many things already. I do Not feel it is wise to put myself through a surgery just to say I tried it, knowing it is not going to help me with my pain.

    That being said, I did see a pain doctor recently who offered another kind of spinal cord stimulator except it is used to treat pain. You would have to see a pain specialist as they are the ones who deal with this kind of thing, not a urologist. It may be worth looking into for you. I am thinking about it right now. I am just leery of having anything invasive done when it comes to my spinal cord. But I have not ruled it out as of yet. I mean I just would like to do more research on it and see how many people with IC bladder pain have gotten relief from it first. As for Interstim, it was proven that it did not help with pain so much though.














    Originally posted by Jjustic7 View Post
    Again, sorry for posting to such an old thread but I just wanted to ask some questions and share my recent experience. I have been diagnosed with IC for about 4 years by my OBGYN who at that time believed in the potassium test. Since then I have been on elmiron 2 different times, and Amitripillne, also DMSO instillations which did not work for me. I found a new urologist who currently has me on vaginal valium 3 times daily, zanaflex 2 times daily, another trial of elmiron, and Enablex. I have tried myrbetriq but caused severe retention and the Enablex is starting to do the same. I find the most relief when I take my vaginal valium and pain meds when I have a flare (not daily). During my cysto/hydro my urologist said my bladder didn't look "that bad" and since doesn't believe my pain is as bad as is it is. She "reluctantly" has referred me to a pain clinic but said I might not get in because I'm only 26. I have a bachelors degree and I am a case manager so me missing work from this debilitating pain is eventually going to catch up with me. She keeps pushing me to have the interstim, and keeps telling me it will help with my pain. I already am reluctant to have the surgery due to the fact my frequency and urgency has been cut in half from taking valium and zanaflex. I went from 20-30 times a day to now 10-15 which is a huge deal for me. I feel like she just wants to profit from the surgery and has flat out told me she thinks I'm pill seeking. I just know what works for my body. I'm in between a rock and a hard place here...I don't want to have the surgery since my frequency is controlled, but is worried about wether or not it will help with my bladder and pelvic pain....anyone have any suggestions? So sorry for the long post. I just really need some guidance from someone that has gone through this.

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  • Jjustic7
    replied
    Re: Is Interstim for pain control??

    Again, sorry for posting to such an old thread but I just wanted to ask some questions and share my recent experience. I have been diagnosed with IC for about 4 years by my OBGYN who at that time believed in the potassium test. Since then I have been on elmiron 2 different times, and Amitripillne, also DMSO instillations which did not work for me. I found a new urologist who currently has me on vaginal valium 3 times daily, zanaflex 2 times daily, another trial of elmiron, and Enablex. I have tried myrbetriq but caused severe retention and the Enablex is starting to do the same. I find the most relief when I take my vaginal valium and pain meds when I have a flare (not daily). During my cysto/hydro my urologist said my bladder didn't look "that bad" and since doesn't believe my pain is as bad as is it is. She "reluctantly" has referred me to a pain clinic but said I might not get in because I'm only 26. I have a bachelors degree and I am a case manager so me missing work from this debilitating pain is eventually going to catch up with me. She keeps pushing me to have the interstim, and keeps telling me it will help with my pain. I already am reluctant to have the surgery due to the fact my frequency and urgency has been cut in half from taking valium and zanaflex. I went from 20-30 times a day to now 10-15 which is a huge deal for me. I feel like she just wants to profit from the surgery and has flat out told me she thinks I'm pill seeking. I just know what works for my body. I'm in between a rock and a hard place here...I don't want to have the surgery since my frequency is controlled, but is worried about wether or not it will help with my bladder and pelvic pain....anyone have any suggestions? So sorry for the long post. I just really need some guidance from someone that has gone through this.

    Leave a comment:


  • Kate16
    replied
    Re: Is Interstim for pain control??

    I have the interstim as well. I have both ends of the spectrum. Either going every five minutes or not at all. Can't seem to find the right setting for me. If anything when I have it on it contracts my muscles thus not allowing me to go but I still have the spasms. Glad to hear it worked for you.

    Leave a comment:


  • ICNDonna
    replied
    Re: Is Interstim for pain control??

    Originally posted by Kecia View Post
    I realize this is an old thread, but I just wanted to say thank you for posting this. My OB/GYN confirmed my IC and from there I found what I thought was a good urologist. My first appointment this man spoke with me for approximately five minutes and immediately said the Interstim is the only thing that would help me, told me he would get me literature and be right back. Twenty minutes later a nurse came in handed me a phamphlet and a paper scheduling the trial implant. Needless to say, I left and never looked back at him. I'm glad I went with my gut. However, I do not want to imply nothing good comes from the Interstim. I just felt it wasn't for me, at least not that quickly from someone who didn't take the time to talk to me, get to know me and my symptoms and history.
    Thank you for sharing your experience.

    Hugs,
    Donna

    Leave a comment:


  • Kecia
    replied
    Re: Is Interstim for pain control??

    I realize this is an old thread, but I just wanted to say thank you for posting this. My OB/GYN confirmed my IC and from there I found what I thought was a good urologist. My first appointment this man spoke with me for approximately five minutes and immediately said the Interstim is the only thing that would help me, told me he would get me literature and be right back. Twenty minutes later a nurse came in handed me a phamphlet and a paper scheduling the trial implant. Needless to say, I left and never looked back at him. I'm glad I went with my gut. However, I do not want to imply nothing good comes from the Interstim. I just felt it wasn't for me, at least not that quickly from someone who didn't take the time to talk to me, get to know me and my symptoms and history.

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  • Sheryl7
    replied
    Good luck with continued success with your interstim.
    i have one as well, and may be revised in the net few months. i have had for 6 yrs.
    Also i know a women, she is also a member here and swears by the interstim, before the implant she had severe retention, which caused urine to back up into kidneys, which if left like that she would die. but since the implant she has been able to urinate with no problem. so we are each different in our needs for an interstim. take care...sheryl

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  • KristinKathryn
    replied
    I am so happy for you Chris! Sounds like it is working!!!

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  • ChrisNes
    replied
    Hey, I got my Interstim implant on the 19th and I took off my pad in my panties. so far no leaking with urge. I have 6 more weeks of doing nothing. The doctors want scar tissue to develope around the wires. I had a kink in a wire on my tailbone, the doctor thought that may have been why I was getting the surges, so he opened that up again and took the kink out. All is fine so far, I just have to keep telling myself not to lean over, reach, squat, or lift anything for the next 6 weeks. The pain med they gave me this time still gave me the itches. I am uncomfortable sitting in my chair so I just lay around. LOL I didnt know the device to change the settings would be so big. It is bigger than my cell phone and I have no room in my purse for it. I wld like to go to the post office and try it out lol...maybe when I am all healed Ill see if I set off any alarms.

    Leave a comment:


  • KristinKathryn
    replied
    Jill:
    I am so sorry your husband is going all of this. I work in the medical field as a social worker and many of my CHF patient's hate the water pills. To add IC on top of this must be so difficult. I am glad you and Bob found a good URO. Thinking of you both!

    Leave a comment:


  • ChrisNes
    replied
    My IC presented with hunners ulcers, pinpoint bleeding, scarring, and shrinkage. My doctor took a photo of my first bladder hydro and he showed it to me so I knew what he was talking about. About 75% of my bladder at that time was a mass of red bleeding spots. The doctor told me it was not the worst case of IC he has ever seen but it was right up there.
    My SSDI case was affected a great deal by this photo of my bladder and I won my SSDI case.

    My interstim doesnt slow down my peeing. b4 I got my trial interstim I would sit and pee and pee so slowly, it has been 13 days since my trial interstim was put into place and I still pee slowly. The doctor never said anything to me about my peeing being slowed more than it already was-is.

    Low back pain, curve in my spine and a fractured tail bone and my doctor went in and did the Trial...wrapped that wire through the holes in my tail bone. Like I said b4 this doctor seemed to think that it might help with my low back pain....he seemed to think it would help with my CPP. I dont know if it is where he sets the end of the lead or what....we shall see if it works for one or the other.
    It has not helped with my IBS as of yet.
    Last edited by ChrisNes; 09-12-2012, 07:35 PM.

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  • bob04951
    replied
    Good for you, you maybe never had IC to begin with, so therefore it is helpful for you. Hope it continues and you get the relief you deserve. YAY!

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  • bob04951
    replied
    Oh, and after seeing many uros, all told us the interstim is very rare for pain control, just frequency and urgency, but maybe things have changed in the past 6 months. I'm not a doc, and would always get a 2nd-3rd opinion. If a doc is "pushing" it (they make big $$$ off it) would def see someone else, even if the others say a big NO. Never take the first opinion for a surgery unless you truly trust your doc with your life.

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  • bob04951
    replied
    No, no, no, interstim is not an option for him. Interstim is supposed to slow your frequency and urgency. If his bladder was to slow the flow, he'd be in CHF and would be, well, not with us. His condition with retaining is a whole seperate issue, so it's complicated. Sure the IC does not help because he does not want to take his water pills, without, he'd be gone by now from heart failure. He takes because he has to, he blows up like a balloon, his legs weep fluid and he can't wear shoes. This is not related to his IC (was going on before), the problem is he doesn't want to take his water pills BECAUSE of the IC (and who would), geeze, he spends 12 hours a day on the toitey without taking.(has developed an imprinted butt, looks like an inverted toitey seat). He can retain up to 50 pounds of fluid at any given time, so slowing that down is deadly for him. Thanks for the question, and anyone who has urinary retntion problems should look twice at this alternative. By the way, he is overweight, but about 50 lbs is fluid and he is not a grossly obese man. His doc told us this week he would saturate him with diuretics if he knew the pain with the IC would not take him first.

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  • KristinKathryn
    replied
    Jill:
    Do you mean your husband retains fluids, like water, in his body? Or retain fluids in his bladder? The reason why I ask is because the Interstim is suppose to help with urinary retention. There is n Interstim page on facebook which is a good resoource.

    Leave a comment:


  • KristinKathryn
    replied
    How long was your trial Cherry?

    Leave a comment:

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