Bladder Neck incision- laser

User

Posted 28 Jun 2022 at 12:24

Hi everyone, hows it going?

so after my prostatectomy in Jan 22 a few weeks after i had the catheter out and it seems my bladder neck closed up (sometimes called stenosis or a stricture I think) and i got a bad infection. Eventually I had to have an urgent surgery to open up the bladder neck as i couldnt pee at all. I had read that doing ti with a laser had better outcomes but the laser wasnt available. Anyway, very shortly after i had the surgery i had the self catheterising option but within a few days couldnt get ot into my bladder. The bladder neck had closed up again. This time they were only just able to get a catheter back in. What i have been recommended is another bladder neck incision. With the laser this time. Its happening tomorrow- 29th June. A day case probably.

I am apprehensive, I fear the bladder neck will just close up again very quickly. I'm not sure what the options are other than repeating this procedure. Would welcome any thoughts or to hear of others experiences.

Dave

User

Posted 28 Jun 2022 at 19:34

Dave, not good to hear you back to square one, as mentioned before it can take a few attempts to sort the stricture. I was told if you get scar tissue building up from the original surgery you are probably going to get the same with repeat treatment.

The other possible option, if suitable is urethral reconstruction where they take skin from the inside of you cheek and graft it into the urethra. You obviously need the right surgeon and my consultant said there was only one guy to do the job, that was five years ago.

Hope all goes well this time.

Thanks Chris

User

Posted 01 Jul 2022 at 09:24

yes- catheter out Monday - will be well watered!

clip was found- it says on discharge letter " posteriorly BN level"

good luck with the scan

dave

User

Posted 15 Jul 2022 at 12:25

So my second BNI didnt work. A few days after catheter removal it closed up again requiring an urgent hospital trip and after three attempts a successful re- catheterisation.

Honestly dont really know what the options are. Will see consultant in next few weeks.

Dave

User

Posted 19 Jul 2022 at 12:42

Hi Chris,

fingers crossed for you.

Yes I have some of the catheters i used myself but i have permanent one in just now. Its doing its job, I also just got COVID so with the heat its curtains drawn and finding a movie marathon to watch!

User

Posted 24 Aug 2022 at 14:33

Dave , I have sent you some info. I was told by one of my consultants that the guy in the link was the only guy he would consider, if Urethroplasty is the option. He is in London.

If you search for Urethroplasty in the "show search" menu above you should find some experiences of the procedure.

Not sure if the reconstruction can be done in a simpler way.

Thanks Chris

User

Posted 03 Sep 2022 at 13:05

I had to self cathaterise for a short time. I'm slightly surprised you have to do it every three hours. How much urine is coming out. Average bladder can hold 400 ml, but feels uncomfortable at about 250ml. If you don't drink too much before bed and fully empty bladder, I would have thought you would get at least six hours sleep, possibly eight hours.

If I were in this situation I would experiment by not emptying bladder till it was way beyond uncomfortable* to see if I could measure what maximum bladder capacity is. If less than 400ml that might indicate a small bladder.

I would then empty as per normal and measure volume if less than 150ml I would be thinking about bladder training to try and get the feeling of needing to pee as late as possible.

*Experimenting on your own body is your choice, don't take medical advice from random guys on the internet.

Dave

User

Posted 01 Jun 2023 at 15:47

Thanks Chris, and i see youve got things coming up this month so you'll be in my thoughts- all the best.

Dave

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User

Posted 28 Jun 2022 at 19:34

Hope all goes well this time.

Thanks Chris

User

Posted 30 Jun 2022 at 16:42

Thanks Chris, Catheter out Monday. A few inflammatory polyps removed plus wayward haemolok clip. and the laser cut at 6 oclock and 12 oclock positions.

If it does not work there was talk of me being referred to Manchester, If that happens i will be asking questions about all if that and try find a good surgeon- wherever they are- I will travel.

Hope all good with you

User

Posted 30 Jun 2022 at 19:28

Dave , if you mean the catheter comes out next Monday, remember to drink plenty before you get to the hospital, better to leak than have the catheter put back in. I did regain my continence after a few days.

There are some very well respected urologist in Manchester.

Hope you don't get any more hem o lok clips , where did they find yours.

Got a F18 scan tomorrow, provided it isn't cancelled again.

Thanks Chris

User

Posted 01 Jul 2022 at 09:24

yes- catheter out Monday - will be well watered!

clip was found- it says on discharge letter " posteriorly BN level"

good luck with the scan

dave

User

Posted 15 Jul 2022 at 12:25

So my second BNI didnt work. A few days after catheter removal it closed up again requiring an urgent hospital trip and after three attempts a successful re- catheterisation.

Honestly dont really know what the options are. Will see consultant in next few weeks.

Dave

User

Posted 15 Jul 2022 at 16:19

Dave, my stricture usually took three months to close up. On one occasion the surgeon didn't think I needed a catheter and the next day I went into retention. A registrar could not get the guide wire into the urethra but did start the flow, after a couple of days of self catheterization it closed down and I had a full dilatation in clinic without any anesthetic.

I would ask who you would be seeing in Manchester, as I said before there are a couple of top professors there.

Thanks Chris

User

Posted 15 Jul 2022 at 17:19

Thanks Chris- i see you had your scan results back.. how u doing about that?

I will have to see what my Blackburn consultant says before there's any other plans..

Technically yesterday I wasnt in retention as the bladder was at 300ml but seemed headed that way to me.. Its pretty scary when you cant pee and are in pain!

took 3 goes to get catheter in but guide wire worked eventually- needs skilled doc who has done it before it seems to me.

take care

Dave

User

Posted 15 Jul 2022 at 18:22

Dave, re scans optimistic but realistic, I could be lucky and they eradicate the cancer, but just because they cannot see anything else does not mean it is not there.

Do you still have any intermittent catheters, I never used to leave home without a couple in my pocket.

Thanks Chris

User

Posted 19 Jul 2022 at 12:42

Hi Chris,

fingers crossed for you.

User

Posted 24 Aug 2022 at 12:44

Hi there folks,

I am still banging on about my bladder neck issues!

Its been suggested we get an opinion for a doc in Sheffield to see I might be a candidate for bladder neck reconstruction..

I just cant find any info on this- any pointers? and how can I find out who in the country has some expertise in this are?

Many thanks

Dave

User

Posted 24 Aug 2022 at 14:33

Dave , I have sent you some info. I was told by one of my consultants that the guy in the link was the only guy he would consider, if Urethroplasty is the option. He is in London.

If you search for Urethroplasty in the "show search" menu above you should find some experiences of the procedure.

Not sure if the reconstruction can be done in a simpler way.

Thanks Chris

User

Posted 03 Sep 2022 at 11:02

so a little update from me- doc used camera and seemed to think bladder neck looked ok, so in situ catheter removed. Was supposed to pee before leaving the clinic but felt like i needed to but couldnt- and felt quite unwell. Eventually nurse helped me self catheterise.

Was advised to self catheterise about 6 times a day as not peeing at all. Had to move to a smaller catheter (size 12) but am now doing this. I get the urge to pee about every 2 or 3 hours and use the SC. Does disrupt my nights sleep doing it every 3 hours when the discomfort wakes me. Its on my mind all the time now..

Not sure what next - consultant gone off urethroplasty option..

I can manage the SC ok but its a faff, not sure about guidance in how often to do it? will ask..

Due to see consultant again soon

any thoughts or comments welcome of course.

Dave

User

Posted 03 Sep 2022 at 13:05

I would then empty as per normal and measure volume if less than 150ml I would be thinking about bladder training to try and get the feeling of needing to pee as late as possible.

*Experimenting on your own body is your choice, don't take medical advice from random guys on the internet.

Dave

User

Posted 03 Sep 2022 at 13:28

thanks

about 150ml each time i would say. sometimes less. i guess i do it because its uncomfortable! maybe will try do it less.

Dave

User

Posted 03 Sep 2022 at 14:52

Ok that's a reasonable figure. I have no experience of bladder training I don't know if it is something you can do yourself.

Dave

User

Posted 01 Jun 2023 at 11:53

quick update on my situation

Had another bladder neck incision, 3rd one, seems to just get narrower, fibrous growth - they had to use some force to open it up.

Had a supra pubic catheter put in- working well, and a relief after the pain of self catheterisation.

Had a urodynamic assessment and await the results on that.

2 litres of pee overnight on first night so was obviously retaining a fair bit. feel loads better.

Really not looking like my bladder neck will be ok, will discuss options in time i suppose.

All the best to everyone

Dave

User

Posted 01 Jun 2023 at 12:55

Dave, I had around 12 or was it 13 excursions into the urethra in an attempt to sort my joint issue, just as I thought we were getting on top of it the RT damage to the bladder meant I had a permanent suprapubic catheter for life. So we never really got to know how successful it was. I can still pass urine through the penis but the bladder doesn't hold enough urine to get a meaningful flow rate.

Last year I went back into theatre to check the inside of the bladder,they couldn't get through the urethra and the risk of damage to the SPC site was thought to be inappropriate, I had lost the connection between between the bladder and port once before.

If not already done so ,a second opinion may be worth thinking about. A couple more tries may be worth doing before taking a more radical route

Do you have a tap on the SPC or are you on free drainage. It is good to keep the bladder working as near normal as possible.

Thanks Chris

User

Posted 01 Jun 2023 at 13:36

Chris

wow 12 or 13 excursions, thats a lot. did u get some kind of medal!?

I dont have the flip and flow SPC- just drains into a bag- I asked for one but was advised not at this point.

I'm not sure what a more radical approach would be, bladder neck bypass? some kind of stoma?

reconstructing bladder neck perhaps. We shall see what the urodynamics says.

take care

Dave

User

Posted 01 Jun 2023 at 14:59

Dave, I didn't get a medal but I did get open access to the urology ward if required and all the staff new my date of birth.

Flip flo valves don't suit everyone, but on free drainage your bladder isn't working as normal.

Yes urethral reconstruction if possible. You probably already know it is better to carry your urine inside your body rather than on your leg. Yesterday my catheter would not drain properly 100mls went in the bag 1300 ml went in the pad and 300 went in my underwear and trousers. A flush and a not recommended reposition of the catheter and all in the bag today,so far.

I couldn't have a stoma because the surgeon thought that if salvage RT had damaged the bladder it could have damaged the bit they use for the diversion. Keep smiling.

Thanks Chris

User

Posted 01 Jun 2023 at 15:47

Thanks Chris, and i see youve got things coming up this month so you'll be in my thoughts- all the best.

Dave

User

Posted 06 Nov 2024 at 23:00

Hi I’ve found this thread from searching for any chat around bladder neck reconstruction.

My husband was diagnosed 2015 with locally advanced prostate cancer treated by robotic surgery plus radiotherapy a few months later as some breakout - clinical trial. Incontinence was moderate to begin with but most unfortunately found to have bladder cancer two years later tho fortunately early non-invasive type.
Treated but had some recurrence. Incontinence became total.

No recurrence now for 5 years thankfully.
But as a result of all this and :

- many cystoscopies to monitor /treat

- course of chemo into bladder

- infections++ including urosepsis after a failed flexible cystoscopy ( scary as hell)

- recurring stenosis and multiple bladder neck incisions

- recurring acute retention becoming more frequent

- inability to self catheterise ( not surprisingly you will understand! )

- and the bladder cancer meaning a suprapubic catheter is ruled out

SO - now looking at referral in London to explore feasibility of reconstructive surgery.

And we are wandering if anyone here has been down that road and anything useful to share?

Hope you are doing well sounds like you guys have had your share of the pain of all this too.

Edited by moderator 06 Nov 2024 at 23:50 | Reason: Not specified

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