Jump to content

Interstim


Slomo

Recommended Posts

Here's a surgical procedure I underwent to try and eliminate my urge incontinence and neurogenic dyssynergia blockage.

First I had a short surgery to implant some wire leads on my sacral nerve. It was a tiny cut on my lower back, and it had to be done while I was awake. This is because you need to able to tell them when they activate test the leads, and if you can feel it or not. Once that was over I opted to be knocked out so they could finish up the surgery.

After that when you're in recovery they connect the leads to a test device. About the size of a deck of cards with a 9 volt battery. You turn it on and start fiddling with the settings and intensity. Over the next 2 weeks they have you dial in those settings for what works best to help control any urges or misfiring from the sacral nerve. The idea is it will act as a sort of pacemaker for your bladder signals.

If all goes well, they have you return for a finish up surgery to have a custom programmed interstim device implanted (again from your back, and a out the same small size as a pacemaker). It's battery is supposed to last 10+ years, and is supposed to eliminate any bladder problems, thereby allowing you to live diaper free.

I have only see one partially successful implant on someone, and for them it only helped reduce their urges not eliminate them. They still had to wear a diaper, but considered it a success as it did reduce their intensity and pain.

 

For me, even that didn't happen. The 2 week test turned into 3 weeks of to what I akin to Chinese water torture. The electrical impulses started out very well tolerable, but even with the Interstim rep changing the settings and dialing it down, that thing got worse and worse over the days. It went from tolerable to slightly annoying, to uncomfortable, to slightly painful, to I couldn't tolerate the constant electrical shock.

I then had to insist they remove the implant, which of course took another surgery. And I'm sorry to say, but after that my neurological blockage got much, much worse. I started have to use indwelling catheters, long term, because of that device. And eventually had to have both my internal and external urinary sphincters removed. But that story I've already posted in another thread.

  • Like 1
Link to comment
Share on other sites

Slomo: Cant thank you enough for taking the time to write this.  Especially since what you described about your symptoms sound quite similar to mine.  I was informed by a trusted neurologist recently, that this procedure wouldn't be very effective for me, but I still had this little bit of wonderment about it.  

 

John, to your point: the Urologist that I saw (who also was to do the procedure) sold it as a miracle.  I would have been disappointed if I would have gotten it done at the time. 

 

There is a lot of information on it in google searches but if I peel back a few layers and read into personal experiences of folks that have tried it, or even read some of the finer print it becomes less glamorous.  It can work amazingly well for certain candidates.  The pool gets much smaller when you start examining the symptoms vs effectiveness.  If the initial claim is 95% improvement, but due to someone's personal  conditions only derives a 30% improvement, is it still worth the effort? At that point would other treatments be similar in effectiveness?  

  • Like 1
Link to comment
Share on other sites

10 hours ago, Zombie_Turtle said:

Slomo: Cant thank you enough for taking the time to write this.  Especially since what you described about your symptoms sound quite similar to mine.  I was informed by a trusted neurologist recently, that this procedure wouldn't be very effective for me, but I still had this little bit of wonderment about it.  

 

John, to your point: the Urologist that I saw (who also was to do the procedure) sold it as a miracle.  I would have been disappointed if I would have gotten it done at the time. 

 

There is a lot of information on it in google searches but if I peel back a few layers and read into personal experiences of folks that have tried it, or even read some of the finer print it becomes less glamorous.  It can work amazingly well for certain candidates.  The pool gets much smaller when you start examining the symptoms vs effectiveness.  If the initial claim is 95% improvement, but due to someone's personal  conditions only derives a 30% improvement, is it still worth the effort? At that point would other treatments be similar in effectiveness?  

I'd say IF you are experiencing very painful urges, then even a 30% pain reduction just might be enough for someone to still get it done, even though it likely won't eliminate this urges or get you out of diapers.

It's a tough call to be sure, but do think twice in getting it done if you might also be dealing with other underlying issues. Such as I was with my neurological dyssynergia. 

And also note, the ONLY way to completely get rid of bladder urges is to prevent your bladder from filling up. Though there are a couple of options to do so. Such as an open stoma (new pee hole at your belly button that will constantly leak), or obliterating your internal and external sphincters via many sphincterotomies, or if you can convince a urologist to do it, a total sphincter-ectomy (go in through the skin and micro-surgicallally remove both the sphincters in one go.

  • Like 2
Link to comment
Share on other sites

Quote

I'd say IF you are experiencing very painful urges, then even a 30% pain reduction just might be enough for someone to still get it done, even though it likely won't eliminate this urges or get you out of diapers.

 

Yes, great point.  Pain reduction is a good reason.  The original goal was to stay dry, but reducing the spasm intensity would improve life too.  It's lost it's luster a bit considering the price tag on the surgery and that it's not the cure once presented.  I have also considered botox, but not sure that would work either.  I've done nerve blocks for pain from other things to no effect. 

  • Like 1
Link to comment
Share on other sites

I also went the botox route, it's basically a bandaid for a deep gash. For me, it did almost completely eliminate my urges for about a month or two. But it also eliminated my sphincters ability to open up and let me pee. The two times I tried it, I quickly ended up with an indwelling catheter for a couple of months.

Though I've also read it has helped others reduce or nearly eliminate their urges, without bad side effects. It's worth noting though, urologists will only do the procedure once every three months, yet it seems to never lasts that long. Also, each subsequent botox injection will be slightly less effective than the last. As your body slowly adapts an immunity to it. Some people can go several years where it still makes enough sense to get it done, but seldom few get more than that.

So if offered botox it's usually worth trying at least once. But even if it works for you, I'd suggest still looking for other long term solutions.

  • Like 1
Link to comment
Share on other sites

Quote

it did almost completely eliminate my urges for about a month or two. But it also eliminated my sphincters ability to open up and let me pee. 

So this is the fear I have.  I have those times when I cannot urinate without excessive force and I worry exactly about that.  Botox was not really that effective on other parts of my body so it may do nothing at all.  The problem for me is in the nerves.  Botox is supposed to paralyze the muscles that are malfunctioning. 

 

I hope to talk to a doctor soon that will listen to me and educate me on it.  It may work on X number of patients, but my case may be different.  I just want the doctor to take those things into consideration before trying to sell me on a procedure.   

Link to comment
Share on other sites

Yeah, they inject the botox into your bladder wall to paralyze it some and stop those sudden spasms. But some residue botox can still mix with the urine in your bladder, which then passes by your sphincter and paralyze that too. Or so I'm led to believe is what happened to me.

And from my own own experience with doctors; YOU need to research and learn every possible cause for your own symptoms, and their treatement options. Then take that knowledge to your doctor and let them figure out which diagnosis fits your symptoms best. And also try to guide them on which treatment you would like to go with.

If you don't, then that doctor is probably going to shoot darts at your problem, hoping to hit the bulls eye. Usually in the dark, without seriously trying, and with using some other medication as the dart. Sadly, if you want real results you usually have to take the lead, because most doctors are just "practicing" medicine, not "performing" medicine.

  • Like 2
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...