Interstim is done

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I had my Interstim procedure today. It all went fairly smoothly. The only problem they had was that they initially put the leads on the left side, but I wasn't getting the sensation from them that I should have been, so they had to move them to the right side. My urologist says that it doesn't make a difference in how well the device works, it's just a matter of convenience because they typically out the device itself above the left buttock in right-handed people. The main impact on me was that I had to go through the very uncomfortable process of getting the leads put into place twice.

I'm in a fair bit of pain now. The doctor didn't prescribe pain meds, which is unusual for her, but I have plenty on hand from the last couple of times I've had a hydrodistension. I don't think I stopped my naltrexone soon enough, though, because I'm feeling basically no relief from some pretty heavy-duty narcotics. It's not intolerable, though, just uncomfortable.

The device is turned on and working, and every once in a while I can feel a tapping sensation along my perineum. I have a controller so I can turn it up and down as my body adjusts to it.

We shall see how it goes. I'm hoping to be able to quit wearing diapers, but even if it just reduces the number of accidents I have it'll be worthwhile. Lately I've been having more wet days than dry days, and if I can get back to one or two wet days a week it'll still be better.
 
Hang in there. Be patient. It will take some adjusting to get where you need to be. Once you make an adjustment you will need to wait a week or two to see if it works. It took me about two months to get it right. I went the full spectrum of wetting my pants to having to Cath to empty. Now I have had it for almost 3years and haven't had one accident in that whole time. Don't even get nervous anymore when I start feeling the need. No urgency anymore at all. My only complaint I have is orgasms are a little uncomfortable but everything is working great. I'll put up with a little discomfort with orgasms over changing my pants three times a day
 
Keep us posted! My doc has said we may be considering that for me soon. Would love to know how it works for you. I’m Kso concerned about cost because my insurance tends to be less than awesome.

Good luck!
 
Thanks for checking in with us, best hopes for success. It sounds ,it sounds like you can expect some adjustments so don't be shy to ask tge doctor for support in adjusting.And if pain killers aren't working tell the doc that too!
 
I am having the initial trial test two weeks from today. This is to see if I get help & then would get the permanent one. I have both bladder & fecal Incontinence so hope it helps. Any tips anyone has would be appreciated. Thanks
 
Please please please post details on its effectiveness.

This is the last possible treatment option I have beside wildly invasive nonsensical bladder removal surgery. I've basically written off any further treatments but every now and again I do consider this one last option.

Really curious to now how much your urges are reduced and how your accidents are reduced. For me, it's not worth it if I'll still need to wear protection.

Anyway, good luck and get well soon!
 
I will certainly keep everyone posted. @dougsbc, thank you for the advice on it taking a while to get the programming just right, and the encouragement of hearing how well it's worked for you!

My insurance covered it 100%, although it's worth noting that I've long since met my out-of-pocket cap for the year. My insurance makes me pay up to $6800 a year (it's a high deductible plan) but I usually meet that in the spring since I am currently getting multiple colonoscopies and at least one MRI a year.

The pain med issue is because I take naltrexone, which is normally used to block the effects of opiates (in my case, it helps reduce the horrible itching from chronic biliary obstruction. Once I got enough meds on board, they started helping. It took the dose of hydrocodone (spread out per the label instructions) and the single hydromorphone I've been saving for just this kind of situation.. The pain isn't completely gone, but it's tolerable now. The biggest downside is that I'm itching very badly, some from being off the naltrexone and some from the opiates.

If the Interstim doesn't work out for me, then I'll be at the point that I can either live with the pain and incontinence, or pursue bladder removal (which my urologist has pointed out doesn't always eliminate bladder pain, surprisingly). Hopefully it doesn't come to that. I'm pushing a bit to have a discussion with my gastroentologist about removing my colon, and two bags sounds easier than one bag and a diaper.

I am very grateful for all the support from the wonderful people here! This is really an amazing group of people.
 
Hey. Sorry about your pain med issue. Thought I’d share a quick tip. Got this many years ago from a relative who worked as a dental nurse. The dentist had a lot of clients who had addiction issues so pain killers were a no go so he prescribed a combo of Tylenol and ibuprophren for short to mid term pain issues from dental work. This combo works for me often better than Oxy without the shit feeling I get from oxy. (I get a lot of kidney stones lol)

They now sell it as a pre packaged single pill.

 
@ltapilot thanks for the update. I am currently waiting to have the trial with interstim. It should have been about three months ago, but could well be in the New Year. Please keep us updated on how it works, cheers Phil
 
Newbie2this said:
Hey. Sorry about your pain med issue. Thought I’d share a quick tip. Got this many years ago from a relative who worked as a dental nurse. The dentist had a lot of clients who had addiction issues so pain killers were a no go so he prescribed a combo of Tylenol and ibuprophren for short to mid term pain issues from dental work. This combo works for me often better than Oxy without the shit feeling I get from oxy. (I get a lot of kidney stones lol)

They now sell it as a pre packaged single pill.


Thanks for the tip! It helped me a lot today. I've not had to take any narcotics at all today, which is good.

The biggest problem I've had today is that sometimes when I shift positions I'll feel a tapping or vibration sort of sensation, and I keep thinking that my phone is ringing. :D
 
Time for another update.

Things are going well overall. I'm already noticing that I'm having fewer episodes of urgency. I didn't wear a diaper yesterday for the first time in over a year (although, to be fair, I didn't leave the house so the risk was low). I did have one urgency episode late in the day, but managed to stay dry. I haven't had a significant leak since the surgery.

One of the puncture points is hurting more this morning, so I'm going to need to check to make sure it's not infected. It's probably just irritated, but if it's more than that then I'll go to urgent care. I called my urologist yesterday over concerns that the dressing is coming off the incision, but she told me to just tape it down and not to worry too much if it does end up peeling off.

I've struggled a bit to find the right intensity. It seems to change when I move positions, and not in consistent ways. It should be below the threshold where I feel it, but often as I move around I can feel it as a tapping sensation in my perenium. The programmer is easy to use to change settings, but I'm hoping I can find a setting where I don't have to deal with it multiple times a day.

Overall I'm happy so far. It's going to be several weeks or more before I'm ready to go in public without a diaper on, but if this treatment works as well as its initial promise I think I'll get there.
 
Maymay941 is right about my experiences with adjustments:

* Higher power settings will quickly drain the battery of the internal device. If you find that you need a setting above 4.0 talk to your doctor. (I had to replace my first device in only 18 months because I had to use too much power. They are supposed to last 5 years.) The doctor can give you a different set of programs to choose from.

* If you revisit a previous channel you might get shocked! So, before changing to a different channel I suggest turning the power down. That way if you go back to it later you won't get shocked. Then increase the power slowly from there. (Maybe keep notes of what power you were using on a channel before moving to a different one.)

This device has made a BIG difference in my life. Praise GOD!

Today is a good example. My wife and I left the house at 1:00 and it is now past 5:00. I still haven't had an urge to go. But this evening, when I recline to watch TV, I will have an urge every hour until I lay down completely. And I still get a little shock sometimes. :eek: Strange how the wires will shift inside.

I pray that things continue to improve for you.
 
Wow, 4.0 is high. Mine is at 0.7 right now, which I can feel as a very slight tapping. I'll probably disk it back to 0.6 soon just so I'm not feeling it as much. I left the hospital at 0.5, so I'm still in the same ballpark.

I think they've fixed the bug that caused the intensity change while changing channels. Mine goes to zero when I switch channels, so each one has to be raised individually. I'm a little surprised they didn't just set up individual levels for each channel.

I just wish they'd added a bit more functionality to the interface unit that goes over the implanted controller so I could adjust the intensity and turn it on and off without having to pull out the cell phone that serves as the user interface. I've worked on FDA approved medical devices, though, so I can understand why adding the buttons is like is difficult. I can still wish, though.
 
ltapilot said:
Wow, 4.0 is high. Mine is at 0.7 right now...I think they've fixed the bug that caused the intensity change while changing channels. Mine goes to zero when I switch channels, so each one has to be raised individually.

WOW! That is GREAT NEWS! It sounds like they have really improved things since my last one was installed.

How long do you expect the battery will last?
(My doc says my current device should last a few more years. I just hope I can last that long 🙄. He also says the next generation will be using Tesla battery technology.)

Do you know if your device is okay with MRI imaging?
(My doc said that the next generation will be MRI friendly.)

I wish I did not have to carry all the hardware around with me. I have to carry a bag for the external controller, antennae plate, and the wire to connect them, plus extra batteries and owners manual.

Then it takes 2 hands to operate. I have to use one hand to hold the antennae plate over the implanted device and another hand to operate the controller. (But, I have an implanted heart monitor that uses "Bluetooth" to communicate with my cell phone 24 hours a day, so I think that Medtronic can figure it out someday.)

Another question for you:
How long do the batteries last for your controller?
My controller eats batteries even when I'm not using it. It never stops using power. I carry extra batteries in my bag because I have been caught with a dead controller even though I haven't used it. There is no way to turn it off when I'm not using it. I hope they have improved that problem.

May God bless you!
 
MezaJarJarBinks said:
WOW! That is GREAT NEWS! It sounds like they have really improved things since my last one was installed.
I think they've been working on continuously improving it. I know another system recently got FDA approved, so Medtronic has some competition, which probably benefits all of us.

MezaJarJarBinks said:
How long do you expect the battery will last?
(My doc says my current device should last a few more years. I just hope I can last that long 🙄. He also says the next generation will be using Tesla battery technology.)
My doctor says 5-10 years. They have a rechargeable one that I considered, but both my doctor and the Medtronic rep didn't recommend it in my case. It has to be recharged every couple of weeks by wearing a belt that holds a wireless charger against it, and I couldn't get an answer on how long the rechargeable battery would last - you know how older cell phone batteries get!. Since it's rapidly improving, I decided that getting a new, updated one in a few years was the best option.

Naturally, the lower the stimulation level, the longer it will last. I've been using 0.7 at night, which seems to be the time that the leads end up farthest from the nerve, and 0.4 to 0.6 during the day.

MezaJarJarBinks said:
Do you know if your device is okay with MRI imaging?
(My doc said that the next generation will be MRI friendly.)
That was the issue that kept me from getting one several years ago. It's not the device itself, but rather the leads that cause problems with MRIs. The full-body MRI compatible leads came out over the summer, after a couple of years of being promised "soon." My doctor has said that they're compatible only with 1.5T MRI machines, but I read something on the Medtronic site that says that 3.0T is OK. I'll probably have to call Medtronic with my serial number (which they have on a card in the case) to get a definitive answer.

Note that replacing the leads is more involved than replacing the entire unit, so you'll have to go through a similar surgery to installing the device in order to get the MRI-safe leads.

To expand a bit on all that, magnetic field strengths are measured in Tesla, abbreviated T. 1.5T is an extremely intense magnetic field; 3.0T is double that. Newer MRI machines have been tending to move to 3T, since they can use larger tube sizes, faster scans, and higher resolution with smaller voxels (the "volume elements" that make up the image, similar to pixels making up a 2D image). Being limited to 1.5T magnets is a limitation, but there will be plenty of 1.5T MRI machines around for the foreseeable future. (If you're wondering, I'm an engineer, and I have my name on multiple patents for magnetic devices used in healthcare - I know way more than I'd ever really wanted to about magnets and magnetic fields!)

MezaJarJarBinks said:
I wish I did not have to carry all the hardware around with me. I have to carry a bag for the external controller, antennae plate, and the wire to connect them, plus extra batteries and owners manual.

Then it takes 2 hands to operate. I have to use one hand to hold the antennae plate over the implanted device and another hand to operate the controller. (But, I have an implanted heart monitor that uses "Bluetooth" to communicate with my cell phone 24 hours a day, so I think that Medtronic can figure it out someday.)
I've attached pictures of the control setup in its case (Samsung Galaxy J3 phone with modified Android software, Medtronic Bluetooth remote antenna unit). The antenna unit has its own battery and connects to the phone with Bluetooth. To use it, I turn on the antenna unit, hold it over my implant (or tuck it in my pants waist if I don't want to have to hold it), wake up the cell phone, swipe the screen (I could set a screen lock if desired), start the app, wait for it to make the Bluetooth connection, tell it to find the device, then make changes to the intensity or the program. After that, I power down the Bluetooth antenna, wait for the app to tell me that it's lost connection, and tell it to terminate the app. It's not difficult, but it's not the smooth user interface that I would have expected.

I looked to see if there was an app I can download on my phone to use in place of the remote, and I've thought about trying to use the remote as a phone so I don't have to carry my own. The former doesn't show up in Google Play, and the latter sounds like an unwise idea (although the device appears to have an AT&T data connection).

I think the problem that Medtronic is having is that the device must pass FDA certification, and there's no way for a customer-supplied cell phone, with all the various Android and/or IOS versions, apps, and everything else that goes on with cell phones, to pass the rigorous FDA process.

MezaJarJarBinks said:
Another question for you:
How long do the batteries last for your controller?
My controller eats batteries even when I'm not using it. It never stops using power. I carry extra batteries in my bag because I have been caught with a dead controller even though I haven't used it. There is no way to turn it off when I'm not using it. I hope they have improved that problem.
Both parts are rechargeable via micro USB, and the stuff they gave me after surgery included a charging cable and a power block. The antenna has a single button, and holding it for 5s or so powers it off. I have a multi-port charger by my bed that I use to charge my personal phone, work phone, and Kindle, so I just added the charger cord to that so I can charge both pieces simultaneously. I just checked the battery; the antenna ("Communicator") battery is at 88%, and the phone ("Handset") is at 81%. I charged them both fully on Friday, but I've played around a bit with the phone - it's currently hooked to my WiFi, and I was reading through the various support documentations along with Medtronic's job opening listings. (Medtronic does have some interesting job openings involving core parts of my skill set, but I don't want to leave Albuquerque until my kids finish school, so I think I'll stick with my current employer for now!)

I imagine it'll go a week or so between chargings, and maybe a bit longer, once I quit playing with it.

MezaJarJarBinks said:
May God bless you!
He has, and very abundantly! I'm trying my best to use the gifts He's given me to spread His blessing to others. I have to say I'm very grateful to all the people here for their support and concern, and especially to MezaJarJarBinks for all the wonderful information he's shared.
 
itapilot,

Thank you for the well written details about your new system. I hope it serves you well.

Interesting what you said about Medtronic having job openings you were interested in. I was a software developer for about 35 years; working for many different industries and using many different technologies as things kept changing. I really enjoyed it.

Then, time and events led to disability and retirement. I consider it to have been part of God's plan for my life. In fact, it gave me the opportunity to study scripture through multiple translations and to draw closer to the Lord.

😀
 
MezaJarJarBinks said:
Then, time and events led to disability and retirement. I consider it to have been part of God's plan for my life. In fact, it gave me the opportunity to study scripture through multiple translations and to draw closer to the Lord.
You have such a wonderful attitude! The ability to look at adversity and see the hidden blessings is truly a gift.

For those who are interested, here's an article from Samsung on the Interstim device, with photos.
 
I get my stitches out today. So far, everything seems to be good - I've had some episodes of urgency, but they've been shorter and less intense than what I had been having. My frequency of having to pee is way down as well - yesterday I went over four hours without having to pee, where I was going every 1-2 hours (and often more than that) before.

I haven't had an accident since before the Interstim was placed. Yesterday was probably the worst urgency/spasm I've had since then, but I s able to hold it until the spasm passed. I've been struggling to stay hydrated the past couple of days because of nausea (one of the lovely effects of my liver disease), and concentrated urine is more irritating to the bladder, which may have contributed to the spasm.

I'm about to order what I hope is my last case of diapers for a while. I'd really love to be able to skip spending the money right now, but I'm not confident enough yet to take that step. If I can make it until January first without any accidents, I'll give it a go for the new year.

In any event, the reduction of symptoms is wonderful. I'm having less pain and less urgency than I've had for a long time. I'm reluctant to declare success quite yet, but even if I don't become fully continent, just the improvement in symptoms is great.
 
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