Incontinence fix – ATOMS, AUS or AdVance?

On_A_Journey

Progress report - the cushion of my ATOMS sling now has 15ml of fill fluid in it, and in my particular case according to my urologist, I can only get it pumped up to 22ml. In effect, two more 3ml top-ups.

Installation with 9ml saw my daily leakage drop from approx 200ml per day to 30-35ml per day once the swelling went down. My first 3ml top-up only saw a slight improvement to 30ml per day. My latest top-up, now that I've had the time to monitor myself, has seen a significant improvement. I'm still leaking, but my average is now around 20ml per day. This means I can get away with wearing a light shield or liner which lasts for the entire 24 hours of a day. The biggest negative impact on leakage remains physical activity, not caffeine or alcohol.

It looks like the sling won't be a complete success for me. I am thinking that I will only get one more top-up for now, probably in early February, leaving myself some room if things deteriorate in the future. My short-term aim is to be completely dry overnight (most nights in bed I'm still losing 1 or 2ml, but sometimes I have no loss) and to be honest, I'm so used to having something in my undies now, if I still have to wear a shield or liner through the day and be confident that it will do the job, and not have to wear anything overnight, then that's good enough for me, especially considering my pre-surgery leakage.

Itzagift

I've not visited this board for several years so I knew nothing about the ATOMS system. I now know that it provides an adjustment method that I asked about when my first AUS was installed on 05-30-12 ... why can't the resting cuff pressure be adjusted if the initial installation guesstimate is not optimum? I've had several revisions for repositioning since then and each required a cuff size and pressure guess. My current system was put in 7-18-18 and provided about 90-95% effective but has slowly dropped to around 80-85%. No doubt some urethral erosion? If my AUS were adjustable I could get back to optimum ... without having to replace the whole system.

Relative to effectiveness, a couple of questions are obvious but difficult to answer. Which of the three provides the least leakage over time? I'm at 5 years with still OK operation ... one pad easily supports 24hrs. (Pre AUS 5-6 full pads.) Which require manual intervention to void? (I cannot do it standing up as it requires two hands to steady and operate the pump.) Can you sit on a bike seat? (Yes I have been doing it for years with split seat.) Which is more difficult/painful installation and recovery. Only someone who's had all three could know. I'm not volunteering!

Bottom line ... do your own extensive research ... make your choice ... learn to live with the outcome or opt to try option 2 or 3. We all know how being incontinent really fouls up you life.

On_A_Journey

Hi there @Itzagift, thanks for chiming in!

You've raised some great points and now that I'm well past the recovery stage, I'm able to provide some more info based on my own observations. Hopefully others reading this will benefit too.

I also like riding a bike. The information pamphlet given to me before the surgery said no bike riding after the sling is installed! What wasn't made clear was whether this meant just during the recovery period, or forever. I asked this question to my urologist and the best he could suggest was to use a split seat, like you do. I ended up not doing so; although I didn't get back on my bike until early December, about a week before my second top-up, it was on my original seat and wearing my padded bike shorts. It was only a gentle, 15min ride in a park, and I seemed to suffer no serious issues with it. I weighed my pad before and after the ride and only lost 3ml, but I recall feeling a bit of a squirt as I got off the bike, so that's probably when most of the leakage occurred. Since then, due to a variety of circumstances, I've only been on the bike once. That was last week, a 45-min ride on some less-than-smooth gravel cross country paths and I was putting in a fair effort. I only lost 5ml and had no pain or other issues. I've come to the conclusion that a split seat or similar is not necessary for me, but I will always wear my bike shorts with the inbuilt padding. The "No bike riding" advice must have pertained just to the recovery period.

I can obviously feel where my filling port is and also feel where the tube to the cushion runs, before it disappears into my body. I can visualize where the cushion is and I'm confident that riding a bike will not damage it. I do have some hard scar tissue on my perineum, but it gives me no trouble.

It's interesting with the issue of standing up or sitting down to void. Pre-surgery I did either, but sitting down was actually less messy, particularly at the start. And, if already seated, it was natural. But now, it is almost impossible to start a stream while seated! I think this is because with my body in that position, it's like the sling cushion is being further compressed. This might explain why I wasn't aware of any leakage during my first bike ride, but I was very aware of leakage when I stood up.

My next (third) top-up has been booked for February 6th.

On_A_Journey

Progress report - the cushion of my ATOMS sling now has 19ml of fill fluid in it after my third top-up, and there will be no more.

My wife and I were extremely grateful to have a comprehensive consultation with the urologist this time around. On the previous two visits, it was all a bit rushed and I was scrambling to remember the questions I wanted to ask while he was performing the top-up procedures while my wife was made to sit in the waiting room. This time, many questions were answered beforehand.

This was my last top-up due to my previous salvage radiation back in 2016, which caused the erosion to my urethra to begin with. The cushion of the sling can theoretically hold 25ml, but 20ml is considered the safe limit for my cohort, I think due to the danger of my weakened urethra being squashed completely and the subsequent risk of an unhealthy level of retention. I agreed that a 4ml top-up now would be more beneficial instead of a 2ml or 3ml top-up now and a further small one down the track. May as well go almost all out.

It was only two days ago, but the results are extremely pleasing. After my surgery and recovery, my daily loss was still in the low 30's ml per day. After my first top-up, it reduced slightly to 30ml per day. After my second top-up, it was still in the mid 20's ml per day. Now, it is 5ml per day! I can live with that!!!

Early days, but promising. 🙂

Old Salt

Thanks for the detailed report!

mtop

https://csn.cancer.org/discussion/comment/1702931#Comment_1702931

mtop

I haven't been on site for years but finding myself with questions. History, had Robot-assisted Radical Prostatectony 1-6-2106. Radiation of Pelvis/Prostate bed (39 treatments). Male sling surgery end of 2016. Sling did not work. Have been dealing with varying degrees of leakage ever since. Finally decided to get the AUS 800 Artifical Urinary Sphincher. Surgery was on Jan 25,2024. Just had some swelling hardly any pain. Was told to manipulate pump twice a day to insure that it stayed in place. My problem is that my scrotum has tigntened up and its had to to move pump. It is also hard to fine end of pump to practice pressing the end of the pump. Device is to be activicated in 5 weeks. Worried that I might not get the hand of operating the pump by then, has anyone else ever had the same concerns or difficulities?

Josephg

https://csn.cancer.org/discussion/comment/1713266#Comment_1713266

Proper pump placement is critical to successful operation. You should be able to easily feel the entire pump with your fingers (including a tiny bit of the tubes coming out of the top of the pump). If you can't, then you need to contact your surgeon now, while there is still some opportunity to reposition the pump.

mtop

https://csn.cancer.org/discussion/comment/1713295#Comment_1713295

Thanks Joseph, I can feel the tubes and the pump somewhat. The pump seems to be low, and in the middle of the scrotum , Meet with Doctor yesterday she said that I was still a bit swollen but healing well. Mentioned relocating if necessary. Small incision under general anesthesia. I guess I will use the UCSD MyChart app and pose a couple questions to her as to waiting until all swelling is gone and just how long I can actually wait to have pump repositioned. Can’t use any meds to help reduce the swelling as I had a GI Bleed 3 days after surgery. Not associated with the surgery. So just ice packs for now. I’am 72, cancer to bones, trying to control with radiation and medication. Just want to get back to traveling while I’m still able without the constant pad changing.

Josephg

https://csn.cancer.org/discussion/comment/1713302#Comment_1713302

It sounds like the pump is well positioned, then. Yes, there is initial swelling and some sensitivity inside the scrotum, when contacting the pump, but that will completely subside in a short time.

jc5549

https://csn.cancer.org/discussion/comment/1702911#Comment_1702911

Yes. AUS can be done if traditional slings fail. Don’t know about ATOMS it has not been available in the US for long so, not as long a track record as more time tested interventions.

On_A_Journey

https://csn.cancer.org/discussion/comment/1713438#Comment_1713438

Correct, including ATOMS. I did ask my guy the same question during a recent visit and got the same answer, so there is always that backup.

On_A_Journey

I haven't exactly had an easy time with the whole ordeal lately. A major reason that my urologist wanted this most recent top-up to be my last, despite the cushion not quite reaching its maximum capacity, was the ever present but small chance of infection at the entry site. Around 1 - 2% apparently, which is not insignificant. The less top-ups the better, etc. In an extreme case, infection that makes its way from the filling port to the sling would necessitate removal of the sling, so back to square one.

The day after the top-up I noticed that the skin on my scrotum was itchy for a day. This didn't happen after the other times. I then started to experience some stinging while voiding and also developed some pain at the tip. Also some redness and tenderness on my ol' fellas skin at times. This coincided with the start of a short interstate trip, and I was pretty uncomfortable on the plane. I began taking an alkalinizer and the symptoms slowly alleviated. I emailed my urologist when we got back home on Feb 14th and he rang back within half an hour!

Turns out that the types of symptoms that he was concerned about only pertained to what would indicate infection at the top-up entry site; the skin on my scrotum. After assuring him that I had some itchiness for one day only, he assured me that the other symptoms that I described weren't related. This was my thinking too - how could infection in a device external to my urethra show up as symptoms inside of it? His explanation was that all the nerve endings around there are interrelated, and that too much retention in the bladder can actually produce pain in other parts of the system. I'm not sure about that, but at his suggestion I had another flow test and ultrasound today and passed with flying colors. So, the symptoms have gone (mostly) and there was no real reason for them. BUT...

I have had a sore lower back over the past few weeks which was already present at my last top-up. I couldn't quite localize where the pain was coming from. It seemed to wander around a bit, so my question was whether the attachment straps of the sling around my ischium bones could be causing irritation or pain. No was the answer. My back progressively got worse with referred pain showing up in my buttock, hip and thigh, then numbness around my knee and into my lower leg. Classic signs of a pinched nerve. It's been a horrible time, I'll tell you. Since then, I've been to see a totally useless doctor (although he did prescribe me some nice drugs) and a very useful physio, and I'm well on the way to recovery now.

I will talk to my urologist again tomorrow after he receives the results of today's flow test. It will be interesting to see if the symptoms that I described earlier could also be attributed to the pinched nerve as well.

On_A_Journey

I didn't realize until now that I had neglected to tell y'all that I'm now dry!

The measured few ml of loss per day was probably nothing more than perspiration down there, soaking into the pad! I became brave enough to go without a pad (a very light shield only) in bed and over several nights saw no evidence of spotting through the night. I then started going pad free during the day, initially giving myself some quiet days at home, with complete success.

I will still wear a shield if I expect some strenuous activity or if we're away from home all day, just in case.

Old Salt

That's good news!