I am at the point where, after my prostatectomy, salvage radiation and sling implant, my incontinence has gotten bad enough that I feel I need an Artificial Urinary Sphincter (AUS)
I had the sling installed in January 2021. It worked for about a year and a half. I was never completely dry but usually a couple of medium pads did the trick. Now I'm up to 5 or 6 full medium pads depending on activity level and diet. I have a cystoscopy next week to see what may have changed.
I would really appreciate hearing from anyone that has been through the AUS surgery that can tell me:
1) How was your recovery compared to RP or if you had sling surgery. Was there any problems with your recovery? How was pain managed?
2) How long did it take for you to feel comfortable using the pump?
3) What criteria should I focus on in selecting a surgeon? There is a local surgeon who did my sling surgery but, as that only lasted 1 1/2 years, I'm wondering if I should travel to a highly rated surgeon or stay with my local surgeon. Is it worth travelling and staying somewhere for a week or two? Is there a list of the top AUS surgeons or facilities in the United States. If you have recommendations, I would really appreciate hearing them.
Thank you for any information. Anything would be helpful. Even just to hear that the operation was successful.
Written by
JR0912
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You might want to contact the manufacturer, probably Boston Scientific, to see if they maintain a registry of surgeons who they feel are "the best". This is often based on if the surgeons have taken courses from them and also that they have repeatedly done the surgery over the course of many years with good results.
I am afraid I don't have any answers for you on the other questions, but I do hope someone here has had this surgery and can provide some thoughtful answers for you.
Yes, exactly. Some medical device manufacturers do keep that kind of listing because they know patients want experienced hands doing the surgery. Otherwise (another thought here) you might contact the American Urological Association (AUA) and they might be able to tell you who in your area is experienced with this surgery. I am not sure if they will be able to do that, but hopefully they can assist you.
I did talk to Boston Scientific. They have lists of doctors who have had special training but they don't have (or aren't allowed to provide it) counts of AUS surgeries or AUS ordered by each a doctor. They have provided me with an example of the button I will need to push and individuals to talk to that have been through the surgery. There needs to be a searchable database for the public to find out the number of surgeries surgeons have completed.
You might try contacting the hospitals where these docs (on the Boston Scientific list) are on staff. I am not sure if they can be that specific, but it's worth a try. I think you can find out how many types of surgeries are performed at a given hospital, but not perhaps who is performing them. I know that a few years back hospitals were trying to be a lot more transparent in regards to their safety and standards. So if you see someone on that list who is in a hospital near you, you can try and see if that information is available.
Talking to people who have been through the surgery is also a really good idea. They can talk about the whole process and any unexpected things that occurred and how that was handled. I worked at a medical device company for 30 years, and that was one thing we always recommended - talking to people who have been through the surgery and are using the device day in and day out.
I had an AUS installed in July of 2022 by a urologist near my home in Morristown NJ. Everything went as expected until November, when all of a sudden it stopped working. It wouldn't close again. I knew this could happen, but also was aware that the probability was very, very small. After consulting with him and others, I learned that the only thing to do was to have it replaced. He offered to do it, but I decided that the second time around I would try to find an expert. I went to Memorial Sloan Kettering in NYC and talked to Dr. Jaspreet Sandhu, who was one of the options I had in mind to do it the first time, but decided it was preferable to have it done near my home. After the second surgery Dr Sandhu told me that the first AUS had had a bad connection, that it had come apart and the water in the AUS had leaked out leaving it inoperative. He also explained that the way the first one had been installed was somewhat different to the way they do it at MSK. He wondered why it had been installed that way. This second surgery was done in January 2023, so I have had it for slightly over a year. So far it is working fine. My first urologist told me he does those operations abut one every other month. Dr Sandhu told this is practically all he does, and that he has done thousands of them.
Bottom line, I think that it is important to get a surgeon who has done a large amount of these operations, and also to have it done at a first-rate hospital. I don't know how far way you are from NYC, but if you are near, I would highly recommend contacting Dr Sandhu. I like him very much. He is a really nice person, he definitely knows what he is doing, and he answers in detail any and all questions. I have also concluded that when having surgery, it is best to go to a top-rated hospital with a very experienced surgeon, rather than doing so near home. The effort is well worth it.
If you have any other thing you would like to ask, please feel free to contact me again.
Thank you very much. I have been thinking along the same lines. That is why I have been searching for top surgeons. I live on the west coast. I would like to find doctors closer to me but will look at going anywhere to get one of the best surgeons.How did it work out for you? Did you stay in a hotel or some other type of lodging? How long did you need to stay before going home? Can you provide me a review of what you went through? Thank you.
I apologize for the delay in replying JR. I have been very busy the last few days and hardly have had a chance to look at my emails.
I only spent one night in the hospital, they sent me home the next day. It wasn't the best of nights, but wasn't that bad after being cut up in places you would rather not be touched. I had a Foley catheter in place after the surgery, but it was removed just before leaving the hospital. The recovery after getting home was rather long. You're going to be very swollen, especially the scrotum and perineum, and this swelling is rather slow in going away. You're going to have to be patient, but you will eventually get back to normal. For sure. Regarding pain, there is some, but no too bad. I don't think I ever took any pain medication, even though they had prescribed some in case I needed it. The first few days you're going to want to stay in bed or sitting, not moving around much, other than that which is necessary. I didn't go back to work for about 4 weeks, but after about 2 I felt I could, but the recommendation was to take it easy for 4 weeks, so I did. You especially have to abstain from lifting anything moderately heavy. During all this time, the AUS is not yet activated, so you need to continue using your diapers or pads. To summarize, you must be patient, but you WILL return to normal. After all that, I felt that the suffering was well worthwhile. Getting away from all the diaper and pad stuff is the best.
Regarding the AUS itself, it won't be activated till about 2 months after the surgery. You will go in and see your surgeon, who will activate it. He will also explain how to work it, and even have you go through a trial to confirm you can do it. It is really very easy to use. At the beginning to will feel rather awkward, but over time you will how to best operate it in your case. I think that in this regard everybody is different, so every person has a different way of using it, but the basic thing is quite simple. You will get the hang of it quite fast. After the surgery, you will get a model of the AUS -actual size- and instructions of how to use it. You should also have a medical alert bracelet or dog tag made indicating that you have an AUS and that a urologist should be contacted before inserting a catheter if it were necessary to do so. This is important.
I expect they will tell you that zero or one pad is success. I hope you end up with zero. In my case, I wear one light pad a day. There are some drops and dribbles once in a while, and that pad takes care of that. I wish I didn't need them, but it still is the world better than all the diapers and pads I had to use before.
I can't think of anything more that I can say. The main thing is that this surgery is well worthwhile. I am sure you will agree, after you have returned to normal. Again, I wish the best result possible. Any other questions, don't hesitate to ask me.
Wow. This is exactly the information I needed. I can get through the recovery period if I know that it will be around a month. I also like that I have heard from multiple people that the pain wasn't bad. I had wondered how long the catheter would be in. I don't mind it being in a little longer than a day as I previously had a bad experience after my sling surgery. The catheter was taken out the day after surgery. By the evening I was in emergency as I couldn't pee all day. That was very uncomfortable. They catherized me again and drained about a liter of urine. I never felt better to have a catheter inserted.I am trying to have my surgery the first of April and activate the AUS prior to a conference I am attending near the end of May. If not, I will look at surgery the first of June. If I am down to a shield each day I would be happy.
Hi JR,I agree totally with Incon and lupitor, great advice. Definitely call Boston Scientific on their patient support line and give them your name and number for them to give it to their Rep in your area. The rep can give you the info your looking for. Tell them you only want a high volume Surgeon in the AUS specifically. I traveled 4 hours to my experienced guy and I'm glad I did. I did stay for a few days afterwards to make sure all was fine. It's a cheap insurance policy I think.
I did not have a catheter afterwards and I was let go the same day as I had no issues the Doc said...plus I was staying 5 minutes from the hospital.
As mentioned, not much pain but much "soreness". The trauma to the scrotum causes it to turn black which is shocking at first but I was told not to be concerned. It did finally clear in 2 weeks. Lupitor is spot on, don't be in a hurry to heal!...it will take 2 months. If you expect 2 months then it's easier to accept. It's not that it's painful it's just soreness and being uncomfortable. My BS rep said the soreness could take up to 3 months. I'm 2 months post activation and I'm about 90% but it's all good. As Jupiter said the opportunity to only use one light pad a day is a blessing from God as far as I'm concerned. I was totally incontinent for 2 years because I did not want to have another surgery after a brutal transurethral resection. I'm glad I finally decided to have it. I had to adjust to being practically "normal" again after pads, clamps and external catheters. Don't take chances...find a very experienced surgeon and be patient! I also offer my thoughts over the phone if you wish. I had that offered to me by someone a few months ago and it was helpful.
Thank you for the excellent suggestions. I have been trying to find the contact information to reach someone at Boston Scientific for a couple of weeks now. I can't find the phone number I need for patient support. I have searched the Boston Scientific website and the fixincontinence.com site without any luck. The only thing I have found is an online provider search. It allows me to enter my zip code and a distance up to one hundred miles to find any providers. Unfortunately, the only information it provides is the provider and their contact information. It doesn't provide me with the number of AUS surgeries that they have completed. It does show a couple of local providers but I don't know that either one has done more than a few hundred surgeries. I'd rather have someone who completed a few thousand AUS. I believe that requires a surgeon who practices in a large metropolitan area.
Any contact information or tips for finding the patient support contact information on the Boston Scientific website would be much appreciated.
I have been having increased incontinence over the last year and I am ready for the AUS even if it means three months to recover. Wearing one pad all day would definitely be a blessing.
This week JR I am away from home on a business trip but when I return I will send you the number of the customer service person who I spoke with at BS. I don't seen to have it on my phone.
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