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Anyone have sacral neuromodulation (InterSTIM) for bladder issues?

Posted by cindybp @cindybp, May 16, 2024

I have a neurogenic bladder with idiopathic urinary retention. I’ve had two cystoscopies that were negative for problems except my bladder is floppy and enlarged. I’ve been through urodynamics and my bladder has limited functionality. They’ve recommended the MedTronic InterSTIM (I believe that is correct).

I’m reluctant to proceed with this because I want to know what caused this problem. Is it the same reason I have IBS-C? I understand idiopathic means they don’t know why, but I don’t want to focus on the problem if it’s part of a bigger picture. Is it possible I have a neurological disease like Parkinson’s or MS?

I’d sincerely appreciate hearing from others who’ve experienced this?

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chicagogirl48 | @chicagogirl48 | Jun 29 5:05pm
In reply to @pml "@ging3 You made a very good decision! At our age, (I'm 79) it's not a good..." + (show)
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@ging3
You made a very good decision! At our age, (I'm 79) it's not a good idea to have any surgerical procedures unless it's a life threatening situation! Our bodies just don't recuperate that well anymore. I am incontinent and just live with it. They had a medication that worked for 9 years but now they don't give it out anymore! So I just cope with the pads and not venturing out a whole lot where there isn't a bathroom handy.
It's good that you are active! That's important to good health.
I wish you the best.
PML

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@pml
I recently did the stim test. I noticed a big improvement in urinary & fecal issues. The only problem I had was that it was very uncomfortable & hard to sit. Even when the test was over & wires taken out, I had some pain by my tail bone. Is that usual? Would it be like that with the implant also? I’m trying to makeup my mind about doing this.

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pml | @pml | Jun 29 8:02pm
In reply to @chicagogirl48 "@pml I recently did the stim test. I noticed a big improvement in urinary & fecal..." + (show)
Profile picture for chicagogirl48 @chicagogirl48

@pml
I recently did the stim test. I noticed a big improvement in urinary & fecal issues. The only problem I had was that it was very uncomfortable & hard to sit. Even when the test was over & wires taken out, I had some pain by my tail bone. Is that usual? Would it be like that with the implant also? I’m trying to makeup my mind about doing this.

Jump to this post

@chicagogirl48
That's nice that the test you had helped you. However it's too bad you were uncomfortable afterwards. Did you ask your doctor about it?

Before you do the implant you might want to give that area of your body a rest for a while. Also do some research and see what side effects you can expect. The Mayo Clinic website is a good place to get that information.

Prayer always helps. After all God made you and he can fix you. I'll say a prayer for you also.
PML

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70infl | @70infl | 3 days ago
In reply to @cdhmri5 "@cindybp Hi, I just had the Interstim surgery this past Monday 9/22; it is working, but..." + (show)
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@cindybp Hi, I just had the Interstim surgery this past Monday 9/22; it is working, but I need to wait for my post op appointment to start making adjustments. During my initial trial, I did feel about a 50% improvement in my frequency/urgency symptoms, but so far post surgery it's not been that good... again, hoping for better performance once we start making adjustments.
I see you wrote this back in May, have you had surgery since then?

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@cdhmri5 It's coming up to 1 year now since your Interstim surgery, how has it worked out for you? Thanks in advance for your reply.

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suzy0509 | @suzy0509 | 2 days ago

I have a neurogenic bladder and I had a second opinion about what else I could do besides straight cath. She said the interstem but I decided I didnt want that

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ermelinda53 | @ermelinda53 | 9 hours ago

I have got the InterStim since last June. I’m able to void a lot better, but unfortunately still need to catheterize at least four times in 24 hours. And, having a hard time with recurring UTI.

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