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AUS800 and scar tissue

Tsimitpo
Posts: 8
Joined: May 2018

Hello, posted this to wrong site I think, anyway here I go again. So sorry for repeating myself.

I have had surgery for scar tissue removal in the urthra / bladder area. Hopefully this procedure will allow me to go ahead with the aus800 fitting in the coming months. I am in Canada so who knows how long that will be. I am actually researching overseas clinics to see if I can move things along, there’s a cost but I don’t want to wait around for a year.

My question is for those brave souls who have had the cuff fitted, how long did the catheter remain in place after the procedure?

I have one after my last op. and forgot what a pain they are. Removal in a couple of days thank goodness.

Thank you for any information, of course I sincerely hope your cuffis are working well.

 

 

 

Dino_F's picture
Dino_F
Posts: 12
Joined: Mar 2018

Tsimitpo,

Welcome to the forum.

I am scheduled to have AMS 800 placement surgery in 17 days.  I had scar tissue issues after my salvage prostatectomy.  I had a transuretral incision of bladder neck contracture (TUIBNC) procedure at the end of February.  In my case, my surgeon did not attempt to remove the scar tissue, but made 4 short incisions through it to relieve my urinary retention issues.  He applied an anti-proliferative drug to each of the 4 incisions to prevent additional scar tissue formation.  The surgeon said I would be left incontinent but would qualify for AUS surgery if I remained open for 3 months.  I went for my 3-month follow up last month and I saw the cytoscope images of my operated area. There was some debris remaining but the procedure was a success and I was clearly open.  My surgeon claims to have done 300 AUS placements.  He says I will need a catheter overnight and it will be removed the next day after the effects of anesthesia have worn off.  Having endured Foley catheters for 9.5 weeks after my prostatectomy and for another 7 weeks this January and February, I have no qualms over a one overnight placement.  I expect to be sore and swollen for a couple of weeks after the AUS surgery, but I will need to wait a total of 6 weeks for sufficient healing before my surgeon will finally activate the device.

Ask your surgeon for the criteria used to assess your readiness for an AUS.  Some patients with bladder neck contractures require more than one surgical procedure for dealing with regrowing scar tissue.  I would also strongly urge you to find a surgeon who has done at least 200-300 AUS placement rather than 20-30; surgical experience will minimize your chances of needing revision surgery.  Look for a medical center of excellence nearby with a strong record in urology and prostate treatments.  I regret that I am unable to guide you in that search, but I would be very wary of going overseas for this.  Good luck and good health.

Dino

Tsimitpo
Posts: 8
Joined: May 2018

Thank you Dino, appreciate your reply. Yes I understand the procedure may need a further treatment. Just hoping I don’t.

My surgeon has a good reputation for the aus fitment, so good his backlog is huge, hence the frustrating wait to get it done.

I wish you well with your placement. The reports, post procedure from almost all patients is very positive. Keep us in touch Dino.

Tsimitpo
Posts: 8
Joined: May 2018

Good news on the scar tissue operation. A 90% chance of non recurrence of scar reforming, so I am told that’s pretty good. Only problem now is I am totally incontinent, I used to get relief at night but go through a couple of pads and the odd accident at night. Meeting with my AUS surgeon in two weeks and hope to get a go ahead date. Trying to stay positive in the meantime. I admit to being pretty miserable with constant drip and flood. Psa test was undetectable, happy about that also. 

Dino_F's picture
Dino_F
Posts: 12
Joined: Mar 2018

 

Tsimitpo,

I am glad to hear that PSA remains undetectable and your scar tissue surgery appears to have gone very well.  Do you know if your surgeon applied the drug mitomycin to your operated area?  In my case, it was, and it seems to have a critical difference in preventing new scar tissue. 

I tend to think of these “transurethral incisions of bladder neck contracture” scar tissue procedures as actually being a 2-step process.  The 1st step, which you have had, deals with dangerous urinary retention issues OK but at the high cost of leaving us totally incontinent and miserably wet.  The 2nd step is the implantation of the AMS 800 artificial urinary sphincter and it attempts to resolve the incontinence of the first step.  In my situation I had to wait 3 months for basic healing plus one more month because of required pre-surgical testing and my surgeon’s schedule between steps 1 and 2.  I am now 11 days past my AMS 800 implant surgery and experiencing all the post-surgical discomforts which others here at CSN have documented.  My surgeon will not be activating my device for another 4.5 weeks and during this time I still have my total incontinence to deal with on top of the post-surgical swelling and extreme tenderness.  I take heart from others who have already been down this road that there is a bright light at the end. Tsimitpo, your eagerness to escape your wet misery is well taken as is your need for patience with a slow Canadian system.  Time can’t move fast enough for those in our situations.

 

 

 

Tsimitpo
Posts: 8
Joined: May 2018

I am very happy for you, the worst is over and your recovery hopefully swift. The discomfort of these few weeks will soon be forgotten. By all accounts I have read, what you and hopefully soon, I, are enduring will be more than worth it.

I got the results of my surgery from my original rp surgeon. He left the detail out regards the actual scar surgery, other than the result of the 90 % non recurrent outlook. He said it better to talk over with the aus surgeon but expected I would go on to the aus process. 

My appointment is next week, such is my anticipation I will feel dissapointed if I don’t get a date for the procedure. I don’t really care for the surgeon, his manner is of a snobby nature but apparently he has a 100% success rate with aus surgery, so that’s OK.

Best of luck with activation Dino and please, if you don’t mind, keep me in touch with your progress I am keen to listen to any help you can give me regards recovery etc. I will post next week regards the surgeons next step. What part of the world do you reside Dino? Thank you.

 

Dino_F's picture
Dino_F
Posts: 12
Joined: Mar 2018

My surgeon talked to me for a little while in the recovery room after he implanted my AMS 800.  He said he found more damage (from my 2012 proton therapy) than expected around the bulbous urethra where he wanted to place the cuff.  Because of urethral atrophy he had to use a size 3.5cm cuff rather than the usual 4.0cm.

I asked my surgeon what would happen down the line if I had erosion issues and needed a cuff relocation.  I knew that 3.5cm is the smallest cuff made by AMS and that it would be too big for areas of my urethra that would have to be used. My surgeon mentioned that he would then do a transcorporal cuff placement.   I have only been able to find a little bit of information about that, including a few photos, on the web.  I am glad there is a solution, but just thinking about such a procedure makes me shudder.  I hope I don't have to worry about it for a few years.

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