Jan. 12 Interstim Surgery Report

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A couple of weeks ago I shared that I would have my 5-year-old non-MRI compatible Interstim device replaced and when I did I'd share the event with everyone here. Here it is:

It took the nurse an hour to prep me (8:45 to 9:45). I undressed to my birthday suit, had vitals taken, and established an IV line.

At 9:45 my wife was allowed to join me. Around 10ish the representative from Interstim (the company name is Medtronic) came to talk with me and my wife about how he would set a baseline on the Galaxy J3 cellphone I would be given to control the setting for the implanted device. He told us we would receive calls from him and Medtronic to make sure it was working correctly. The company describes the device as a "pacemaker for the bladder. It also works for the bowels. I need to keep a diary for the next two weeks. That can be seen at https://www.centralohiourology.com/wp-content/uploads/2020/11/bladder-symptom-diary.pdf. I will receive calls directly from Medtronic and their local representative to report diary entries. BTW, I had the surgery in Charlotte, NC.

At 10:30 the surgeon and her nurse came to see me and a talk for about 7 or 8 minutes.

At 11:26 I was rolled into the OR. At 11:45 I was out with anesthesia. I was rolled onto the operating table that looks similar to this:

A breathing tube was placed at some point.

The surgeon made two incisions on my right buttock. Once to remove the actual neural stimulate (Interstim device) and one so she could get to and remove the leads going from the device to my sacral nerve. She then moved to my left buttock where she was placing the new device. She probed my lower back to find the sacral nerves that the new device would be attached to. Once she located those, she placed a lead which is connected to the temporary device known as Stage 1. There are great videos explaining various aspects of the process at: https://www.medtronic.com/us-en/hea...euromodulation/education-training/videos.html

The procedure was completed by 2:20 PM and I was taken to the recovery room.

I came out of the anesthesia at 3:15. It took an hour for me to be clear-headed enough to be discharged from the hospital at 4:15 with my wife doing the driving.

About an hour after I left the hospital I received a call from the Medtronic rep to remind me how to start the device. When I got home I did that. If you want more about how that works, you can check here:https://insights.samsung.com/2020/0...hone-based-programmer-incontinence-treatment/

I have prolonged sending this information to the forum until I talked with a Medtronic Support member. I just called and reported the information on my bladder diary and the team member told me it would not be appropriate to changed the setting on the cellphone. She said someone will call me in two days to record and evaluate whether or not to make changes.

Before closing, those with bowel incontinence should know these Medtronic devices are also available for them.

I know this has been a long message, but wanted to share all I know.

Feel free to ask questions if you like.

Thanks to everyone who has been here for me.

 

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@fleemoore

Like you, I had my older device replaced. I always have my device implanted in my back, above the belt line. I don't have any fat on my but and I suffer lots of pain at night or when sitting due to inflammation of the piriformis muscle there. (I do PT for it, but it takes time to recover from a flareup.)

I never liked the user interface in the older devices, so I was hoping for a simpler user interface with the new setup. Unfortunately, to me, it is more complex than the old one. Now I must fool with 2 cell phone-sized devices whenever I change settings, and I must keep them both charged. I was warned to never let them completely go to zero charge, because they are a bear to recover from that.

I hated the way they placed all the apps on the home screen. I only use one app. So, I moved all the other app icons to a different screen and put the app that I use in the middle of the home screen.

The only thing I like about the new setup is that if I move to a different channel, it will automatically "forget" the amplitude for the previous channel. I keep a log of every change I make on paper.

May all go well for you!

 

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@MezaJarJarBinks Thanks for sharing this. It's nice to know about the placement in your back. I have piriformis muscle issues. I'll talk to my surgeon when it's time for the Stage 2 implant. Appreciatively, fleemoore

 

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@fleemoore

You are very welcome; glad to help. I'll pass the "thanks" onto God. Couldn't do it without Him!

 

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@fleemoore @MezaJarJarBinks

A few questions, First I am set up to try the Axonics sacral neuromodulation on the 24th.

1) What does it actually do for you? ( I have both bladder and bowel issues but not with urge)

2) Would you try it if you were only 37 like me and still facing ostomy surgery?

3) Is it like a brain pager or more a stop you from going device?

4) Does it wake you up at night?

5) Does it help you with any pain you have?

6) Were you able to stop taking medication with the device?
7) How much of a change in accidents did you see with the device?
Lastly,
8) Were you/ Are you already disabled and this device only doing quality of life improvements.

Thanks for any replies.

 

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@fleemoore Thank you very much.

 

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@fleemoore @MezaJarJarBinks I don’t have pain in my butt, but I often have an obnoxiously fluttering left buttcheek. It’s in area I have that’s permanently numb from falling down the cliff. I also had a third-degree burn there, which further aggravated the numbness. But I get insane, insatiable phantom itch all over the scar but what about the fluttering, do you have that with your piriformis muscle problems? I’ve actually never talked to any of my doctors about this.

 

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@ThatFLGuy,

A few questions, First I am set up to try the Axonics sacral neuromodulation on the 24th.

1) What does it actually do for you? ( I have both bladder and bowel issues but not with urge)
I have urinary urgency and an overactive bladder (OAB). With OAB when I have to pee I don't always have time to get to the bathroom. The device that gets implanted is attached to the S3 sacral nerve which is the nerve that goes to the brain that lets me know I have to pee. The device lets me know I have to pee so I have time to get to the bathroom in time.

2) Would you try it if you were only 37 like me and still facing ostomy surgery?
I'm not at all familiar with how involved your ostomy surgery will be so I can't answer that question. I would get at least two opinions if I was you.

3) Is it like a brain pager or more a stop you from going device?
It is described in the literature as "a pacemaker for the bladder." So I'd consider it more of a brain pager.

4) Does it wake you up at night?
Last night I had to pee 4 times during the night. I have always been awaked when I have to pee. I would say the device has nothing to do for me when it comes to that. Other people may be affected differently I would imagine.

5) Does it help you with any pain you have?
The literature states it is not intended to help with pain.

6) Were you able to stop taking medication with the device?
At this point I have not stopped taking medication (Myrbetriq, Vesicare, and Flomax) I do not know if that will change assuming I have the Stage 2 device permanently implanted.


7) How much of a change in accidents did you see with the device?
The original device I had helped prevent accidents because the connection to the nerve allowed me more time to realize I had to pee and thus I had more time to get to the bathroom.

Lastly,
8) Were you/ Are you already disabled and this device only doing quality of life improvements.
Short answer: it makes my QofL better. I am a 71-year male. I do have a propensity to fall once or twice a year due to balance issues. Based on daily urinary diaries I have completed, I pee about every 90 minutes on average. Sometimes I don't have time to get to the bathroom and I either empty my bladder(That is rare.) or I leak urine. This device will relieve me of that at least 50% of the time, possibly more based again on the literature. It is not intended to work 100% for most people.

You did not ask this, but I know you have been in a quandary about what to do. For me, I chose to replace the Interstim device with another Interstim device instead of choosing the Axonics device, because I know I am not the kind of person who would always remember to charge the device. I know it's supposed to last 10 to 15 years before replacement. I just don't want to have to deal with the recharging issue.

Feel free to ask any other questions and I'll do my best to answer them.

I'm sending you positive vibe, sir.

Thanks for any replies.

 

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@snow,

I don’t have pain in my butt, but I often have an obnoxiously fluttering left buttcheek. It’s in area I have that’s permanently numb from falling down the cliff. I also had a third-degree burn there, which further aggravated the numbness. But I get insane, insatiable phantom itch all over the scar but what about the fluttering, do you have that with your piriformis muscle problems? I’ve actually never talked to any of my doctors about this.

Snow,

I do not have a fluttering in my butt cheek from the device. However, when the setting for the device is first established after the Stage 1 process, there is a sensation like a woodpecker is pecking at the area between my anus and my testicles. It is not painful because I have control of the cellphone that has the Interstim app. If I adjust it too high, I just stop.

I am in Stage 1 of the implant process. This means the lead has been attached to the S3 foramina in my lower back, and I have two weeks to see if the new device, which was placed in my left butt cheek, will benefit my quality of life. As I wrote to ThatFLGuy I have to pee about every 90 minutes. Sometimes I have leaks. The Interstim device is intended to help with that at least 50% of the time. That improvement is good enough for me.

Regarding your incessant itching. I have that in my upper back near my right shoulder blade where I had a MRSA infection years ago. There is an indentation in my skin that's about the size of a nickel and a quarter-inch deep. I have talked to my dermatologist about this. She told me that the infection caused the nerves in that area to get messed up. It doesn't drive me crazy but it sure can be annoying. Could this be your issue?

I'm happy to answer other questions if you have them. I wish for you positive karma.

 

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@ThatFLGuy

@fleemoore @MezaJarJarBinks

A few questions, First I am set up to try the Axonics sacral neuromodulation on the 24th.

1) What does it actually do for you? ( I have both bladder and bowel issues but not with urge)
In my case, I was having to pee every 30 minutes at night. Basically, my bladder was saying it was full when there was only 4 ounces. The device interferes with that signal, and now I dodn't get the urge for 90-180 minutes. BIG improvement!

2) Would you try it if you were only 37 like me and still facing ostomy surgery?
Sorry, but my situation is so different from yours that I have no way to advise you.

3) Is it like a brain pager or more a stop you from going device?
I would describe it as a signal interference device. The bladder's signal is not heard by the brain as soon as it used to. So, I can wait longer. Since you don't feel the urge, I don't know how it would affect you.

4) Does it wake you up at night?
No. I set the device amplitude/power to be comfortable and non-distracting.

5) Does it help you with any pain you have?
It does NOTHING for pain. I take tamsulosin/Flomax for that. I only have pain if I hold it too long. Then, it hurts to release the bladder. The meds ease that pain.

6) Were you able to stop taking medication with the device?
No.

7) How much of a change in accidents did you see with the device?
I have never had any accidents before or after the device. I have minor dripping if I wait too long.

Lastly,
8) Were you/ Are you already disabled and this device only doing quality of life improvements.
Yes, I am disabled, but more from other conditions than urinary problems. Even so, the device does help with "quality of life".

From all that I have read about your conditions, I don't see how this device would benefit you, because you say you don't feel the urge. That is what the device works on for me. Maybe your doctor has told you something that I have not heard of.

As far as the bowel issues, I don't have that problem. In fact, I have to deal with constipation.

Thanks for any replies.

God bless you!

 

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@snow

@fleemoore @MezaJarJarBinks

I don’t have pain in my butt, but I often have an obnoxiously fluttering left buttcheek. It’s in area I have that’s permanently numb from falling down the cliff. I also had a third-degree burn there, which further aggravated the numbness. But I get insane, insatiable phantom itch all over the scar but what about the fluttering, do you have that with your piriformis muscle problems? I’ve actually never talked to any of my doctors about this.

Fluttering?
No fluttering for me.

Itching?
No, but I had that after a surgery of the abdomen. It took years, but the nerves have finally resolved, and I can satisfy any itching now. Hopefully, it will get better for you in time.

God bless you!

 

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@MezaJarJarBinks @fleemoore

Okay, another few questions.

1) How bad is the trial procedure?

2) Would you do the final procedure if you only saw a 10-20% improvement in accidents?

This is more of a thought than a question, But seeing as I am only 37 I will need more than one replacement in my lifetime? So, how bad is the replacement procedure? How bad is it if they have to remove the leads?

I know there are MRI restrictions on this a well that have me thinking but I can cross that bridge when I get there.

 

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@fleemore, thank you for the detailed description of the procedure! Mine was largely similar to yours, though my surgeon placed the leads under local anesthetic so that she could get feedback from me on how they felt. Plus I didn't get the fancy table - I'm a little jealous now!

One trick I've learned is to turn off the cell phone when I'm not using it - I often go a month or more between charges of the phone, since the battery drain is almost zero when it's off. If I just put it to sleep, I have to charge it every few days.

 

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@ltapilot,

You're welcome.

I have lower back issues so I think the table was to try to reduce the chance of making it worse.

Thank you for the tip about the cellphone battery life.

 

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@ThatFLGuy,

Okay, another few questions.

1) How bad is the trial procedure?

After the first device was implanted five years ago I had some minor pain issues where the surgeon had to probe through the skin in my lower back to find the sacral nerve.

I did not have that this time. After this trial, I have an incision where the old device and lead was removed, places where the probing was done for the replacement device, and an incision on my left buttock for where the new device will be implanted.

2) Would you do the final procedure if you only saw a 10-20% improvement in accidents?
I would not simply because at 10-20% improvement would mean 80-90% I would still have urgency issues. Given that I pee about 8 to 10 times per day, it wouldn't be worth it for me.

This is more of a thought than a question, But seeing as I am only 37 I will need more than one replacement in my lifetime? So, how bad is the replacement procedure? How bad is it if they have to remove the leads?

My surgeon told me the removal of the leads is the most challenging part for her. The lead has sort of like fish hooks that hold it in place. Taking that out could be an issue. She did get the entire lead out the time, but she told me if it broke off it wouldn't have any negative effect on having an MRI in the future. It's the battery that made an MRI impossible.

As for the replacement of the battery, an incision is made where the battery is, the old one is removed and the new put in its place; very minor procedure.

I know there are MRI restrictions on this a well that have me thinking but I can cross that bridge when I get there.

The newer model Medtronic sacral neuromodulation device is MRI compatible. My understanding is the Axonic is also MRI compatible. According to their website, the Axonic battery needs recharging every 1 to 2 weeks for 30 minutes to 1 hour. I know I would not be good at remembering that so I went with the Medtronic product. The upside of the Axonic is that the battery is reported to work for 10 to 15 years. If I was 37 and consider the Axonic for sure.

Again feel free to ask more questions.

 

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@ThatFLGuy

Okay, another few questions.

1) How bad is the trial procedure?
I have always had general anesthesia, so no pain.

2) Would you do the final procedure if you only saw a 10-20% improvement in accidents?
I don't think it would be worth it for me. However, keep in mind that the permanent version will perform better than the trial.

This is more of a thought than a question, But seeing as I am only 37 I will need more than one replacement in my lifetime? So, how bad is the replacement procedure? How bad is it if they have to remove the leads?
My surgeon has always used a fluoroscope (real time x-ray) to guide the placement of leads. Replacing the stimulator is simple. He has always replaced the leads.

...MRI restrictions...
Medtronic's has an MRI setting that allows you to have MRIs.

I would not recommend getting a rechargeable stimulator. That would be inconvenient. Ask your doctor if you can get one that is NOT rechargeable.
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@ltapilot
I turn mine off too.

 

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I'm 53 now, but I was 51 when I had my Interstim placed in November 2020. I discussed the rechargeable system vs. the non-rechargeable system with my urologist. She started out just planning the non-rechargeable one for me, but I insisted on at least discussing the options It's not major surgery by surgeon standards, but as the patient, any time they're making an incision on me it feels pretty major!

There were three reasons I chose the non-rechargeable device. The first is convenience, because having to have the charger available and use it every week or ten days sounds like it would get old pretty quickly. Most times I could just do it when I'm sitting at my desk, but what about when I'm traveling, or working on a project, or just forget and now I need to charge it at a time that isn't very convenient? Some of that is just based on knowing myself.

The second reason is that even the rechargeable device has to be replaced. My urologist estimated ten years for the non-rechargeable and fifteen years for the rechargeable; I don't know how accurate these numbers are, but that's what the doctor said. For me, looking at 20 to 30 years of life remaining, it would boil down to two replacements for one system and only one for the other. Not a huge difference, even if having to go get an incision is kind of a big deal.

The third reason is the place at which technology advances. If I'd had an Interstim placed ten years ago, I'd be eager to get it replaced so that I could get the new one that's MRI-compatible and has more capabilities in the control and programming. What's the next version going to look like? I don't know - maybe it'll be similar, but maybe it'll have a bunch of great new features that I really want. Maybe it'll be rechargeable but only need to be charged once a year. Whatever I it is, there's at least a chance that I'll really want it, and if I got a chargeable one then it's harder to justify upgrading.

That's me of course. @ThatFLGuy, you're about fifteen years younger than I am, so my 30 years or remaining life become your 45 years, going by the statistics. If my doctor's numbers are correct, you'd get the non-rechargeable replaced four times and rechargeable replaced twice. That is two extra times through your life that you have to go in and have day surgery; only you can decide if that is an acceptable number or not.

As far ss your other question about whether to get it for a 10-20% improvement, I'm not sure you could measure a 20% improvement. That would end up looking like no improvement at all. In my case, I had a 50% improvement with the trial, and even that was hard to measure. If I'd based my decision solely on that, I don't think I would have gotten it done. However, I maintained hope that the permanent one would help more, and that worked out well for me because I did have a much better response to the permanent one. It's not perfect, but in conjunction with ongoing Botox injections I no longer find it necessary to wear diapers in most situations where I'll have reasonable restroom access. It's hard to overstate what a big deal that is for me.

That's not you, of course, that's me. Your problems are different from mine, and your expectations may be different from mine as well. All I can do is share my own experiences, and maybe give you a little bit of information that may help you make your decision.

 

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@ltapilot

Very well put! These are gadgets that will either improve or be obsolete by something else.

 

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@fleemoore Thank you for the good karma I’ll take that! Thank you for the advice about my buttcheek. It was numb for the two days between the cliff fall and the burn but I’m sure the burn scar made it worse. I have a new back doctor who I’ll see again next week and ask her about it, and the (bad!) results of my new neck and back MRIs. Your responses to @ThatFLGuy were nicely written and thorough.

@ThatFLGuy If the device you’re considering isn’t MRI-friendly, I wouldn’t get it, given that there are now some models that *are* MRI-friendly.