Question about interstim process

Ebabyboy12

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I’m incontinent and have no control over my bladder and little control over my bowels. The only procedure my Drs suggest is the interstim surgery. I’ve heard positive and negative things. My question is this. Will it get me out of diapers? Can I completely regain control of both my bladder and bowel?
 
I'm in the same boat and have also heard good and bad things about it. Interested in answers too.
 
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I'm going to start the trial soon. I've been waiting for several years while they trased us with the release date of MRI-safe leads, which are critically important for me.

Basically, they do a test where they implant wires in your back under a local anesthetic, because you need to give them feedback about what your feeling as they apply electrical pulses to the wires. Once they're in the right place, as judged by your reactions, they stitch them in place and send you home with an external unit. You use that for a couple of weeks, and if the results are good you proceed on to the actual implant. They place permanent wires, out the device in an area followed it off your upper buttock, and connect everything. You control it with a magnetic control.

I've also heard mixed things about it, but it's important to keep in mind that those with good experience are much less likely to hang out in incontinence forums than those for whom it didn't work. And it is reversible, should you later decide is not working. (Some folks have said they have had nerve damage from it or it wasn't completely removed; I'll leave it for those folks to chime in with their experiences.)
 
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ltaluv said:
I'm going to start the trial soon. I've been waiting for several years while they trased us with the release date of MRI-safe leads, which are critically important for me.

Basically, they do a test where they implant wires in your back under a local anesthetic, because you need to give them feedback about what your feeling as they apply electrical pulses to the wires. Once they're in the right place, as judged by your reactions, they stitch them in place and send you home with an external unit. You use that for a couple of weeks, and if the results are good you proceed on to the actual implant. They place permanent wires, out the device in an area followed it off your upper buttock, and connect everything. You control it with a magnetic control.

I've also heard mixed things about it, but it's important to keep in mind that those with good experience are much less likely to hang out in incontinence forums than those for whom it didn't work. And it is reversible, should you later decide is not working. (Some folks have said they have had nerve damage from it or it wasn't completely removed; I'll leave it for those folks to chime in with their experiences.)

my dr wants to me to cath for a two week trial, trying to figure out it I have a retention issues before we talk about interstim. I pee all the time. Like 15 times a day In my diaper. when ever I don’t have a diaper on I see myself leaking. Drips at a time. Today after my first cath when I removed it I peed on the floor then five minutes later I peed again. I don’t think I have a retention issue. I just wish my Dr would answer my question about interstim and if it can work for me. I’m going to cath and keep a log for them I’m just tired of all the back and fourth. This is why I stopped going to the urologist the first time. They couldn’t give me a straight answer regarding what’s causing my issues to begin with. Ugh frustrating.
 
Have any tests been done to determine pelvic floor muscle strength?
 
ArchtopK said:
Have any tests been done to determine pelvic floor muscle strength?
I went through nerve testing, the test where they put a camera in your bladder, the one where they fill your bladder with water in till you can feel the pressure, and where you pee on a scale to measure pressure I think. Sorry I don’t remember the names. Three years ago I was told I had neurogenic-non-neurogenic bladder. At that time they suggested interstim. I couldn’t afford it at that time which brings me to today.
 
My urologist had me attend a meeting with the manufacture rep along with lots of other patients and the rep was very clear that Interstim is not a cure to get people out of diapers, he said there are cases where it has worked for some but it would be wrong of him to say it will work for all, that would be like hanging a carrot over a horses head to make them walk for it and never allow them to get it. He said the main goal for the Interstim is to lessen the amount of protection a person has to use.
 
checkingoutall said:
My urologist had me attend a meeting with the manufacture rep along with lots of other patients and the rep was very clear that Interstim is not a cure to get people out of diapers, he said there are cases where it has worked for some but it would be wrong of him to say it will work for all, that would be like hanging a carrot over a horses head to make them walk for it and never allow them to get it. He said the main goal for the Interstim is to lessen the amount of protection a person has to use.

this is what I want to know about from my Dr. it’s like he won’t say that it may or may not cure my issues. I just want the facts to make the best decision I can for my family and I.did you end up getting the procedure done? If so what were you issues prior and what was life like after?
 
I had that discussion with my neurologist(s) and pain doctor after my wreck, around the year mark my bladder control issues were beyond obvious and nowhere near under control.
The inter stem was the new thing at the time and looked promising, in my case the risks from surgery, my injured spinal cord and the constant swelling, still present 11 years later, have put it off the list.
the principal sounds good, I use a tens unit for pain management and I can see how it should work.
but each case will be different, for me the best option risk vs choice is diapers and I don’t have to worry about an mri if I need one. Talk to your doctor(s) about the pros and cons and your situation.
 
It's definitely not a cure-all, and surgical risks are not trivial. In my case, though, I've got nothing to lose - I've already started discussing urinary diversion with my doctor, which would leave me with a urostomy instead of a bladder. She's not on board yet, largely because she can't imagine someone preferring to wear a bag instead of a diaper, but I'm tired of the relentless pain in my bladder and feeling like I always, always have to pee.

If Interstim helps with that, then I can keep my bladder.
 
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ltaluv said:
It's definitely not a cure-all, and surgical risks are not trivial. In my case, though, I've got nothing to lose - I've already started discussing urinary diversion with my doctor, which would leave me with a urostomy instead of a bladder. She's not on board yet, largely because she can't imagine someone preferring to wear a bag instead of a diaper, but I'm tired of the relentless pain in my bladder and feeling like I always, always have to pee.

If Interstim helps with that, then I can keep my bladder.
I hope whichever route you go the pain stops. I know cathing twice now I’m in more pain then before I cathed. Ugh. It’s so uncomfortable and to get an ounce or two. Still wearing diapers too.
 
I've been cathing 6-10 times a day for the past few weeks, since any urine in my bladder causes a lot of pain. You get used to it. Are you using hydrophilic (self lubricating) catheters, and small sizes? Those both help a lot.
 
ltaluv said:
I've been cathing 6-10 times a day for the past few weeks, since any urine in my bladder causes a lot of pain. You get used to it. Are you using hydrophilic (self lubricating) catheters, and small sizes? Those both help a lot.

size14 and I have to apply the lube prior to inserting it. Do you still leak? Both times cathing today I peed with in a minute after removing the cath. Not a lot but more then drops. Find it odd.
 
I started with a size 8, which is trickier to insert because it's so flexible, but it's much more comfortable when you're starting out. I use an 18 now because it's easy to insert because it's more rigid, and it drains much faster. But I've been cathing for years.

I still find it uncomfortable to use one where I have to apply a lubricating jelly separately. Hydrophilic catheters have a water packet inside their package, and you squeeze it to pop it and wet the catheter before you even open its sterile wrapper. This activates a lubricating layer on the outside of the catheter, which makes the whole thing very slippery. The lubricating layer is also attached to the catheter, so it doesn't just rub off in the urethra the way Surgilube and other separately-applied do, so it's lubricated so the way in. Finally, I use a Coude tip, which goes through the final sphincter much more easily. I like the Lofric Origo brand, which uses saline that activates the lube more quickly than plain water, and has plenty of liquid in the package so I don't end up with dry spots where the lubricant isn't activated.

Hydrophilic catheters are more expensive, but my insurance covers them. I find pain PVC catheters to be a little barbaric, especially when they first then onto new users.

All your urologist if you can get some samples. My doc has a closet full of catheters, some supplied by manufacturers and some by patients who end up with more than they need. I take her a case when I have some left over, since I don't always have to cath 7-10 times a day like I am at the moment (insurance provider me 240 a month, which is 8 a day).

Also, ask about getting Urojets. These are disposable syringes filled with Lidocaine gel, with a smooth plastic tip intended to squirt it in the urethra. It's an easy way to get numbing gel in there, and helps when my urethra gets irritated. Again, my insurance pays for these, and my doc was able to get me same samples before she wrote the prescription. I had to show one to my pharmacist so he could order the right thing (they'd never heard of them) but now it's just a routine prescription that I pick up every month.

As for leaking after you cath, that means you're not quite getting all the urine out. I find that leaning forward from the waist helps, whether I'm cathing while sitting on the toilet or standing in front of it. Sitting tends to work best for me, and I just keep a plastic container in the bathroom to put on the floor in front of the toilet to drain the urine into. It's another thing that my urologist have me, and it has markings so I can measure residual volume to keep track of how my bladder is doing.

Finally, I find it helpful to pull the catheter out of my sphincter, then push it back in to make sure there's nothing left in my bladder. If you're already irritated, though, that might not be a good idea. Be sure to pull the catheter out very slowly, and if more urine starts to flow (or even drip) as you withdraw, stop pulling it out until the flow stops.
 
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Ehorton said:
this is what I want to know about from my Dr. it’s like he won’t say that it may or may not cure my issues. I just want the facts to make the best decision I can for my family and I.did you end up getting the procedure done? If so what were you issues prior and what was life like after?

I wasn't a candidate for the Interstem. I work at times around some very high levels of magnetism which would have destroyed the stimulator. I have lost control of my bladder it, goes when it wants to and the Interstim might have helped some, but I would still have to wear diapers because of not being able to make it to a bathroom quick enough and or just because the bladder over rides the stimulation. If I still had to wear diapers, then why spend all the money and time to go through having the device installed and not cure anything. Another thing I was still having some other medical conditions where they were taking MRI's of my body. With the stimulator installed, you can't have an MRI, just like those who have pace makers.

The company rep said, the stimilator is very similar to a pace maker but for the bladder. He explained that during the trial test, the unit will be outside of the body and then once everyone feels things are right, they will put it inside your body. During all this, there is always a chance the leads can move and if they do, they won't work as good or cause other things to happen such as jumpy legs and such. Those items they can catch quickly and repair, but it may require another simple surgery.

Since diapers was allowing me to live the quaility of life that I want to live, my Urologist agreed that there wasn't a need to for anything else since all the meds didn't work and the Interstem wasn't for me either. Both of my urologist were shocked at how well I was doing wearing and using diapers not letting it stop me from living.
 
checkingoutall said:
have lost control of my bladder it, goes when it wants to and the Interstim might have helped some, but I would still have to wear diapers because of not being able to make it to a bathroom quick enough and or just because the bladder over rides the stimulation. If I still had to wear diapers, then why spend all the money and time to go through having the device installed and not cure anything.

this right here is why my wife and have skepticism With the procedure. If it doesn’t get me out of diapers why do it. I’ve heard it will help and get you into a lighter diaper or pad. In my opinion a diaper is a diaper regardless of how bulky it is. If I’m going to take the risk and spend the money I want to know I can wear underwear and not piss and crap myself. Sorry tmi.
 
checkingoutall said:
I wasn't a candidate for the Interstem. I work at times around some very high levels of magnetism which would have destroyed the stimulator. I have lost control of my bladder it, goes when it wants to and the Interstim might have helped some, but I would still have to wear diapers because of not being able to make it to a bathroom quick enough and or just because the bladder over rides the stimulation. If I still had to wear diapers, then why spend all the money and time to go through having the device installed and not cure anything. Another thing I was still having some other medical conditions where they were taking MRI's of my body. With the stimulator installed, you can't have an MRI, just like those who have pace makers.

The company rep said, the stimilator is very similar to a pace maker but for the bladder. He explained that during the trial test, the unit will be outside of the body and then once everyone feels things are right, they will put it inside your body. During all this, there is always a chance the leads can move and if they do, they won't work as good or cause other things to happen such as jumpy legs and such. Those items they can catch quickly and repair, but it may require another simple surgery.

Since diapers was allowing me to live the quaility of life that I want to live, my Urologist agreed that there wasn't a need to for anything else since all the meds didn't work and the Interstem wasn't for me either. Both of my urologist were shocked at how well I was doing wearing and using diapers not letting it stop me from living.
Do you have to cath? My urologist demands that I self cath three times per day. I don’t understand when I’m peeing/leaking all day into my diapers.
 
Ehorton said:
Do you have to cath? My urologist demands that I self cath three times per day. I don’t understand when I’m peeing/leaking all day into my diapers.

At first my urologist has me self cathing and measuring out put. Since I was 100ml or less I was able to stop. The main reason they want you to self cath is for retention. If you have retention that backs up into your kidneys, it will cause major kidney issues. So my urologist has me get an ultrasound of my kidney and bladder once a year to keep a check on it.
 
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checkingoutall said:
With the stimulator installed, you can't have an MRI, just like those who have pace makers.
This is no longer the case. They have just released MRI-safe leads, which will allow those who've had the device implanted to have MRIs. This was critically important for me to be able to consider the Interstim, because I have liver disease and need a yearly MRI to screen for bile duct cancer.

Ehorton said:
If it doesn’t get me out of diapers why do it.
In my case, I just want it to relieve some of the pain. I don't care so much about wearing diapers if I don't hurt, although given the choice I'd rather not hurt AND not wear diapers.
 
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ltaluv said:
This is no longer the case. They have just released MRI-safe leads, which will allow those who've had the device implanted to have MRIs. This was critically important for me to be able to consider the Interstim, because I have liver disease and need a yearly MRI to screen for bile duct cancer.

Italuv, thanks for that update. I looked at the new models and they are much different then the orgingal models. They did note you can get some MRI's but there is a document that provides full MRI disclosure of what types of MRI's and such.

As for the pain, I never had pain so this wouldn't have been used to help me there. The only pain I have now is when/if I use Foley Catheters, they tend to clock up and cause my bladder to spasm and hurt really bad.

I still find it very important to sit down and make a list of questions out to go over with your Urologist and see if they can't get a rep in to discuss all of this as well.
 
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