Interstim Impant

[Baby Brian]

Has anyone had the Interstim implant in the last year or two? How did it work for you (or not), and what should I expect?

I've had urge incontinence for the last 16 years since a really bad car wreck. I've see a dozen different urologists for it and had been put on just about every incontinence med out there. To this day I still get uncomfortable (and sometimes painful) urges that I will pee in about 20 seconds- regardless if I make it to the bathroom or not. I always seem to wake up at least once in the night to pee my diaper, then roll over and fall back asleep again (if I can). Most urologist have seemed like they didn't know what they were doing, just didn't care, or were too focused on curing me that lost sight of just trying to improve my quality of life all together.

Today I went to see yet another urologist, but this one actually seems to have gotten it and recognized I have over active bladder OAB that is causing my urges (probably from a spinal injury that went un-diagnosed from my wreck). He wants me to try a test week for an interstim implant to try and see if it cures me. If that doesn't work he plans on using botox to weaken my sphincter so I can pee without the urges and hopefully sleep at night. I've really come to like wearing diapers (leaks and all) so personally I think I would prefer option two for the intermediate/long term, but I have to jump though this hoop first.

I'm scheduled for an outpatient surgery later this month to get the temporary electrodes implanted. I'm told that in about 80 percent of people who get it done, they see a 50 percent improvement or decreased symptoms. That sounds like a 40 percent success rate to me. The other 20 percent; apparently they get pain from the device, infections, or it just doesn't do anything. I'm hoping to stay objective though, who knows I may still help.

[Bettypooh]

Do keep us updated, and good luck finding the peace you need!

Bettypooh

[diaperpt]

I'd been having problems with frequent urges and went ahead with a TURP. Coming out of that, the frequency of the urges have subsided, but when I do have an urge, I'd better be very close to a bathroom. Strangely, at night I wake up and can't pee until I get up and go to the bathroom. During the day though I wear diapers.

This was upsetting my wife who asked me to go back to my urologist to see what he'd have to say. He had 3 options: Imipramine, which might interfere with drugs I'm already taking; interstim or botox. He didn't recommend any one over the other and just left me with the information. I could go back to him at any time and talk more or decide on a course of action. My course of action is to live with this, especially after reading up on the internet. It seems the Botox wears off after several months and has to be administered again. My memory may be wrong, but it seems that the interstim has to be taken out and replaced at some intervals as well.

Keep in mind, these were my impressions and memory of what I saw on the internet - this may be completely wrong. My reason in posting is simply to say that there may be some issues for people to consider.

If I'd lived with major problems for 16 years as Baby Brian has, I might be much more apt to consider these treatments. Baby Brian, I do wish you well, but if you haven't investigated very carefully, it might be wise. Asking for input here is clearly a good idea. I hope you get some direct feedback.

[Baby Brian]

diaperpt, thanks and you're right. I did a bit of research on the interstim. Similar to a pacemaker its battery wears out after 4-5 years and needs to be replaced (surgically of course). So... that's going into the cons column. In fact I keep finding posts where it either works great for or not at all- apparently there is no in between. From what I can tell it really only works about 40 percent of the time for a noticeable improvement in eliminating urges. Other times it can be similar to what you described by reducing the urges but making the ones you do get that much worse. I'd probably be more likely than ever to wake in the middle of the night too. There's also a big potential for the electrodes to cause a constant, low-level pain or tugging sensation that won't go away. So.... a few more for the cons column. Pro; well... it could actually work (worth 3 or 4 points on that side if you ask me). We'll see.

[wetatnight]

my urologist wanted me to have the intersyem inplant also

but the more i researched it the less i wanted to have it done.

I'll just stick to adult diapers and pull up's.

[blitz1027]

I had the interstim test done about a year and a half ago and it did not work for me. My urologist couldn't figure out why so he basically gave up. I went and saw another doctor about some bowel issues and he said for some reason my sphincter muscles work in reverse so when I try to tighten they loosen and vice versa. He said that is probably why the interstim did not work for me. Hope you have better luck than I did.

[Baby Brian]

my urologist wanted me to have the intersyem inplant also

but the more i researched it the less i wanted to have it done.

I'll just stick to adult diapers and pull up's.

I have to admit the more I research it the more I'm leaning towards sticking with diapers too. If this interstim test doesn't give me a very significant improvement then I think I will be declining it.

[Bettypooh]

In the early days of internal medicine surgery was the last (and often fatal) option IMHO It should still be seen as the last option. The body wasn't meant to have anything extra stuffed inside it and while we're better at it now, there are still complications which occur sometimes which require removal. Sometimes insurance does not cover this so that is another place you will want to research

Life can be like that, offering you a limited range of choices with none of them really good ones. Like anything else, learn all that you can before deciding and hope for the best!

Bettypooh

[Baby Brian]

I had my pre-op done yesterday. I'm scheduled for the surgery on Thursday the 24th.

Bettypooh, thanks for the concern. I've had soooooo many surgeries, implants, and removals in the past I started looking at it like "what's one more" as long as I get a good chance of a permanent improvement, but you're right. Every surgery is another risk. And this interstim isn't permanent- it's battery wears out after 4-5 years and needs replacing with another surgery. Still, I plan to see this through. If I don't like it then my urologist will give me botox injections to weaken my external sphincter (down side there is it wears off and will need to be re-done every 4-6 months).

FYI, I have the military's disable retiree insurance, Tricare Prime. They know how to take care of a person and will cover just about anything. Even the stuff they say isn't covered- is. I once spent 3 months straight in the hospital. My total bill was around $50 (sorry, I don't mean to brag, well...... maybe I do)

[Baby Brian]

Aaargh, what a debacle. I got a call from the hospital yesterday just before 5pm that my insurance referral was not approved. Since most offices were closed I had to do a lot of running around, and getting the run around, before I found out my urologist's office didn't submit my insurance referral until Tuesday evening. My insurance company (Tricare Prime) says it takes 3-5 days for a referral to get approved so it's still pending. The on-call doctor at my urologist's office made the call to cancel my surgery. Guess who has to fix this problem now- me.

[Bettypooh]

I'd be explaining to my Urologist that he's not going to be paid until whoever caused the mess apologizes to you and promises to not let anything like this happen to anyone ever again. Nobody should make a mistake like that- it's far from what you should get from any "Professional"

Bettypooh

[Baby Brian]

Ok, so here's the finger pointing. My insurance co requested my medical records 2 days before the surgery. My urologist says their office faxed it over right away but my insurance co says they never got it. Neither followed up on it so my referral was still pending even the day I was supposed to have the surgery. I, not my insurance and not my urologist's office, but I, got the ball rolling again. My insurance co got the records & approved the surgery this morning. My urologist's office referral coordinator said she would give my approval to their scheduler and would make sure I got called today to reschedule it. It's 8pm and still no call. Hmmm, I wonder who screwed it up before and is doing it again, hmmm?

I'm still planning on going through with this. I'm sick of living with these urges. They must go no matter the cost! Besides, I've waited 16 years, what's a couple more weeks?

[cbabab]

Please let me know how it goes. I am a candidate for the same surgery. Just haven't committed to it yet.

[Baby Brian]

Commiting to the surgery hasn't been the hard part for me, it's getting it done. All last week I waited to get the call from my urologist's scheduling person. It never came, so at 9am I called her & left a message for her to call me back- nothing. By 3pm I asked their front desk clerk if she had even been in all week. The answer was yes so I had her paged & waited. Finally she answered & I fist asked if she got my message. Another yes but no explanation as to why I've been ignored so much. She started to schedule my surgery for the 7th but added it would be tentatively scheduled only. Given that was only 6 days away and I already had a problem with giving the notice for time off before I had to push it back to the 14th. Unfortunately she says the rep would not be there that day so it got pushed back to the 21st- tentatively. However; she would call this rep to confirm his availability then call me right back. By 4:30 I had to call her again (and again had to page her to answer). She admitted not getting to it and would call the rep monday morning.

Gee, I wonder if it could be someone in my urologist's office who has been messing up this surgery for me? I swear if I have to call her by monday afternoon I will instead be calling her boss. Either she is incompetent or overworked. Either way they need another person working the schedules over there!

[Baby Brian]

I'm getting the test implant tomorrow morning. Wish me luck.

[cbabab]

Good luck Brian, I am interested to hear how it goes for you.

[Bettypooh]

Hope everything goes perfectly for you I know you'll let us know how it goes afterward

Good Luck!

Bettypooh

[Baby Brian]

Ok all, I've had the surgery. I hope you don't mind seeing jolt, butt and scrotum in the same sentence.

They actually kept me awake for the first part of the surgery which hurt pretty bad. I did get the local but the incisions still felt like a deep scratch with a hot needle. They needed to make two incisions; I'm guessing the first one is a two inch cut right around my upper-right butt, and a second one inch cut around my upper-middle/right butt. The lead was inserted with a very long and very big needle (didn't see it but sure felt like it). They had inserted it in a ways which hurt as they pushed it in, then tested it by slowly turning on the lead. I felt a small electrical jolt (think not quite 120 volts but way more than 12) in my lower right butt that also made my right toes twitch. That isn't far enough in though, so they pushed it in farther which hurt again. Another test and it I could feel the jolt closer to my bicycle-seat area, lower on my right butt. That still wasn't enough so the pushed it in farther, which again hurt really bad. On the third test I could feel the electrical jolt between by butt and scrotum which apparently was close enough.

Next they had to cycle through some settings that somehow changes the direction that jolt is applied and how strong the current is. A few settings and I could barely even feel the charge, one setting hurt really, really bad like getting a full 120 volt, finger-in-the-socket kind of feeling. Once they got it right it has felt more like the electrical stimulation physical therapists use for rehab on injures & muscles. It's not so bad, more like an annoying tingling or constant muscle twitch. Oddly the twitch varies even though the charge is constant. Sometimes I don't notice it much at all, sometimes it's really annoying.

The test lead is actually the permanent lead that will stay if I choose to keep it. It has a kind of extension cord that for now extends outside my body and to a pager sized device with a clip on it (I keep it clipped to the side-back of my diaper). It's powered by a nine-volt battery and has an adjustment knob to increase or decrease the intensity of the charge. I'm supposed to keep it right around where I can just barely notice it. I'm not sure if I have a defective unit though as it keeps turning it's self off so I have to keep checking for the green light and reset it every couple of hours or so (I'm told it's a new battery so who knows).

As for comparison results. I used to get near painful urges every couple of hours. When the urge hit I would have about 20 seconds to get to a bathroom or (usually) end up using my diaper. I had recorded a voiding log before the surgery and was averaging about 200-250cc each time I went (but ranging from a mere 25cc to 350cc), and not going more than 2.5 hours between wettings. Now with the implant I seem to be getting the urges still, but they are half as painful (tolerable at least, but still there). They already seem to be coming a little farther apart, about 3 hours or so, and when it does hit me I have closer to 40 seconds to get to a bathroom, or still end up using my diaper. My body is still adjusting and I will start another voiding log tomorrow morning.

I was hoping for better results but this does seem to be closely in line with the "80% of people will see a %50 improvement". So far this seems like a 30% decrease in the urges, 60% decrease in pain, and 50% increase in warning time. I can see the near-constant tingling could get annoying, especially if that's permanent, but I'm withholding final judgement for a few more days. For now I'm still hurting & healing from the surgery. They have me on antibiotics (once daily) & vicodin (every 4 hours). Oh, bed rest too (luckily I'm a side sleeper because my back side is sore).

[Puggsley]

Hi Brian,

Nice to hear that your healing. I hope the device works out for you considering the pain involved getting it put in.

It's good to hear that you've noticed some improvement. Hopefully you'll get a bit more as everything settles down.

All the best!

Puggsley

[Bettypooh]

Glad it went OK and I hope the pain subsides soon About the unit turning itself off- maybe it's how you have it positioned- can the switch possibly be touching something according to certain movements? I don't know, that's just a thought. If it's a raised button type switch, you might be able to tape or glue something shaped like a small ring around it, higher than the button itself so it can't be moved unintentionally. I have a piece of portable test equipment that is battery operated which needed that modification so I didn't find myself out in the field with a dead unit Many others using this same device have done similarly and it works well. The manufacturer changed the switch on later units after fielding too many complaints, so if this is your problem too, let them know so they can work on that.

Bettypooh

[Baby Brian]

Hi all. After a full day of healing I can say my back side is still very sore, thankfully the Vicodin is helping me to function ok. I feel like the life was sucked out of me and it is now only slowly returning.

I think I was able to figure out why the device kept turning off. The off switch is integrated with the sensitivity dial and it has some resistance to it, so it stays where ever I set it at- so that's not it. It seems whenever the plug wire gets snagged or tugged on, the device will turn off. The plug has a clip that stops it from pulling out but apparently it's still sensitive to that, so I'll have to be more careful.

The small jolt I've been getting has also been producing a small twitch on my right butt (go ahead and laugh I know it's funny). It isn't painful but has been more like Chinese water torture- after a while it adds up to drive you crazy. I was also noticing a slight warming sensation around where the lead tip is at, which apparently is not a good thing (my skin is not extra warm to the touch though). Still, as such I've had to turn the dial down past zero (on a scale of 1 to 10 it was at level 1 before). It seems like it's still working though (level 0.9 maybe). I have a good picture of the device but can't figure on how to upload it (if I even can). I found this web site which has an ok picture in the second image down; figure 4. http://www.miklosandmoore.com/interstim1.php

I'm still pretty well in line with my initial results though, so I'm guessing my slight improvement may not improve any more- we'll see. I'm scheduled to follow up with my urologist Friday afternoon. That's when I tell him to schedule the permanent implant or (with a local anesthetic) he can just pull it out right there. I'm trying not to make that decision yet but I am leaning towards one already. Guess which one it is.

[Baby Brian]

Edit to my earlier post on the incisions;. I just changed the bandages (as directed) and got a look at them. There is one very small 1/4" incision at the top middle-right of my butt, and a second 1" long incision a couple of inches to the right of that one. The interstim implant wire is protruding out a couple more inches to the right of that. Sort of like - --- . It sure felt like a lot more than that at the time though. At least they are healing nice, no new bleeding or infections.

The device is still working on the lower setting and my twitching has been minimal, not sure if I will ever get used to this though. So far I've been able to make it to the potty monster 1/2 of the time, before it was 1/3 of the time. A slight improvement. The urges are less intense, but still there. The time between wettings is averaging 2.5 hours for me, also a slight improvement.

The more I think about this the more I lean towards not keeping the implant. I'd say if I was desperate to get out of diapers then I'd go with the slight improvements as it would be better than nothing. I like wearing diapers now, but most importantly want to get rid of these urges- completely. The interstim isn't doing that.

[Baby Brian]

Aaaahhh, I woke up this morning with a major twitch in my right butt. Every time it twitched I could feel the electrical jolt like it was discharging after having built up. I had to turn the device off an hour before my muscle calmed down. Still, I promised to give this test a try so after a few hours I turned it back on again- this time a little lower on the setting (maybe level 0.8).

I can now say this thing has become a real pain in my butt.

[Baby Brian]

Ok, it's been a while since I last posted so here goes.

I ended up talking with the interstim representative monday morning the 25th. He had me make some more changes to the test device which again didn't seem to be working out. I talked to him again on Wednesday & Friday, making more changes to the device settings each time. After wednesday's changes my urges almost dropped off by 75% but the bruising and twitching returned once again so I had to turn it wayyy down again (to about 0.03 just barely above the off setting) which also dropped the percent improvement of improvement just as much.

On friday the 29th I got to take a nice long break and have the device unhooked for most of the day. Everything calmed down and my muscles started to feel better once again, as did my overall health & energy. On friday the rep had me make some more changes and it finally seemed to click like a light switch. I had to test the new settings by temporarily turning it up to where it almost hurt again and this time it felt quite different- not like the painful jolting/twitching I had before but more of a vibrating electro-massage this time. The rep then had me turn it back down (to about 0.03). I left it there for a few hours and it didn't worsen (no bruising feeling) so per his instructions I turned it back up to about 0.05 for the rest of the day. The next morning on the 30th it still didn't hurt so I turned it up to about 0.07 but that afternoon I started to notice that bruised feeling on my right butt again so I turned it back down to 0.05.

By tuesday the 3rd I had taken note that my urges had settled to about half of what they were before the test implant (around that 50% improvement mark I was first told of). I was able to go at least 3 hours before needing to use the bathroom or getting another urge. When I did get the urges they weren't as painful, but were still quite.... urging. On the down side, when I did need to use my diaper there was an increased flooding. Overall it seems my diaper was leaking or at least threatening to leak more than it was before the implant, even though I was still making it to the restroom more often.

Late that afternoon I saw my urologist again and decided not to keep the implant. Overall I felt that if I was desperate to get out of diapers then I would take every little bit of improvement I could, as-is. I like wearing diapers though and I know there are other (better) treatments out there that can get rid of my urges 100%, not just the 50% is was getting with this implant. Of course there was also the consideration that it is a foreign implant in my body that would need to be surgically replaced every 4 years or so. I personally don't like having to consider needing repeat surgeries every 4 years, and would prefer something more permanent.

Thursday the 5th I had the implant removed. They put me under before going into the OR this time so that was a little nicer. After waking up I could already feel better without that annoying wire sticking out of my back side- constantly getting tugged on when I bend wrong or lay on it. He had re-made the same incisions as before but for some reason my urologist didn't use stitches or even those tapes that get super glued on (like last time). Instead he just glued the incisions together but the glue was hard and was already cracking. My incisions bled a bit, so later at home I had to put a large band-aid type pad over the entire incision to stop it from rubbing, cracking, and bleeding more. Even now it still hurts more than it should though. Also, before my surgery I told my urologist not to prescribe percocet for my pain as it upsets my stomach really bad and that I wanted vicodin instead (which I've been using a lot for 16 years now). After waking up in the recovery room they tried giving me, you guessed it, percocet and he had already left the hospital. I had to wait until friday morning to get the prescription changed and still had to go to his office to get it- Uuugh what a pain.

It's Tuesday the 10th now and my incisions are still a little painful- butt healing, at least I have that vicodin just to help me get though driving around and working all day (fyi- I've used it for so long now vicodin to me is probably like extra strength motrin is to most other people- effective but just). The glue is flaking off now which only seems to making it raw and bleed a little bit. I have another follow up with my urologist on the 17th. We've already discussed the likelihood of going with botox to deaden my sphincter. It will make me 100% functionally incontinent but will also get rid of my urges. That's for another post though.

FYI, attached is a picture of the interstim test device (a slight bit bigger than pager sized).

[Bettypooh]

Well at least you tried- had success been there and you not tried, you could have lost what you sought. One thing I find hard to get into a Doctor's head is that this is my life and my body and I will decide what to do with it even if you don't like my decisions I go to the Doctor not to be cured, but to find out what my options are so that I can better choose what to do next. It seems you think similarly and I hope the next effort brings you peace in your life no matter what anyone else thinks about it, for peace is the most valuable rarity there is in this life. I hope your experiences will be of help to others who may face your choices someday, and let them make the decisions which are best for them

Thanks for sharing!

Bettypooh