Options for either a HoLEP or PAE

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Guys, at present  an tethered to a catheter and am mighty sick of it. reason for this is my template biopsy early Feb (32 cores taken) and large (> 100cc prstate) seems to have tipped it over the edge. Two TWOC failed and for sure I don't want to go through that experience again. Not only that but catherisation for me involes a cystoscope so it is not straightforward to re-insert.

Urology offered me the HoLEp which from what I read is a 'good' option. Privately (here in the UK) I can have it done on Sunday! However, i am investigating the PAE option and have as yet to meet with any specialists though that is on track next week but no idea as to how long it will take to reach a conclusion. I can also do that privately in 3 - 4 weeks. The costs for those interested is around 5.5k UKP. I amprepared to pay for a quck resolution to this drama.

So, just wondering about opinions here please?

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  • Posted

    If PAE options are what you are after I would contact Dr Sebastian Arun, the consultant radiologist at Colchester Hospital. He did my PAE and I asked him if he was happy to be contacted by private patients so am happy to recommend. I can't comment on whether PAE is a better option for you than HoLEp but I'm sure he will give you an honest reply.

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    • Posted

      Thanks for that input, I am speaking to the people at Oxford for private work.  I may contact Dr Arun to see what his workload is like.

      May I ask do you find PAE a success?

      What I was really meaning to seek opinions from the forum about was is the choice between PAE vs HoLEP a 'no brainer'? In other words go for HoLEP if at all possible? However, it is very tempting to go in on Sunday and get it all sorted albeit with a set of side effects that PAE does not seem to give you.

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  • Posted

    Until you decide what to do, and also to make you much more comfortable so you don't have to rush that decision -- two options.

    1. Self catherization (CIC). Many of us here do it, It's easy, fast and painless with a little practice. No tubes in the urethra, no bag. You get your normal life back.

    2. Subprapubic Catheter . If you can't or don't want to CIC, then suprapubic is bettter than a Foley. No tube through the urethra and no bag if you get the Flip-Flo Valve. Less infection risk than with Foley.

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    • Posted

      Then, if it were me, I'd ask for a suprapubic with a Flip Flo valve option. You will be much more comfortable and while using the valve won't have a bag to carry around. It's a minor surgical procedure, not much more invasive than a cystocopy. Basically they put a thin tube through your lower abdomen either drains into a bag or can be drained into the toilet if you use the flip flo valve.

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    • Posted

      Hi Ian, what is preventing you from doing self catherization ? Maybe it was what happened to me. The nurse could not do it and I thought that something was wrong with my anatomy. Turned out that she did it incorrectly. After some self experimentation, including going from coude to straight , and going down in size to 10fr, I was able to do it. After the first few successful attempts, I knew my body better and now using 12fr and 14fr, for 6 months now, like a pro. Hank
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    • Posted

      Hi Hank, I think the prostrate is so swollen up (at least a few weeks back now) that nothing would go through so they use the scope and some other jiggery-pokery with a thinner pilot guide wire that they fed the catheter over. However, the pain of AUR - I've had it 3 times now - means that I never ever want to go through that again hence my reservations regarding PAE success in my case.

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  • Posted

    Hi, Ian,

    Your discomfort with the indwelling Foley catheter is understandable. I had Foleys in for 3 months total, and they aren't much fun. But I wouldn't let that rush me into choosing a treatment option.

    Before you decide, I'd check out a video on you tube by westymedia. You can search for pelvic floor exercises introductions. A physio therapist explains what can happen to our pelvic floor if our prostates get shelled out. It helped guide me in my treatment options. Due to my large prostate and large median lobe, my options were limited at the time to HoLEP and PAE. I went with PAE.

    Also before you decide on a treatment, you need to know how well your bladder is working--you can clear the pipe via HoLEP, etc., but if the pump (your bladder) is weak, you may not gain much from the surgery. In my case, my pipe was restricted due to BPH, and my bladder tone was very weak. Knowing this, I went ahead with PAE to stop the growth of my prostate and to make CIC easier.

    Five urologists all told me that their surgery would allow me to urinate normally again, but I knew my bladder tone is weak. When I would press them on the odds of their surgery working for me, they backpeddled on their claims.

    Best of luck to you!

    Stebrunner

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    • Posted

      I was told by Urologist that sometimes bladder tone can come back once you fix the underlying cause of the issue - it can take months - of course depends how old you are and so on. How long ago did you have PAE and did it help? I know someone who had Urolift, he said he pees really well, but he still self caths because he has to pee every hour otherwise. I'd rather pee well and occasionally self cath than not well and still have to self cath.

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    • Posted

      Hi, Mike,

      I had my PAE done in June 2016. In December 2015 I had acute urinary retention--and they drained 7 liters out of my bladder. Yes--7 liters! Consulted with 5 uros, including 2 at the Mayo Clinic. Due to my extreme retention, I was told I'd never be able to naturally void again.

      Prior to my PAE, I could occassionally naturally void 10 to 20 ml. Immediately following PAE, I could regularly void 30 ml. I started to follow the Jimjames plan for rehabbing my bladder through CIC (you can read his thread on this site). Eventually, my natural voids increased to 100 to 200 ml. This improvement shocked my current uro, who tried to dissuade me from PAE. Things were going well until I had bladder stones removed about a month ago. Since then I've had a setback. Hoping this is temporary.

      In my case, I checked out HoLEP with the Mayo Clinic. The Mayo uro expressed confidence that the procedure would allow me to void naturally. But when pressed, he admitted that I might have to use my abdominal muscles or the crede manuver to void--and that I'd have retrograde ejaculation. He also admitted that I still might have to CIC. I wasn't willing to gamble sexual function on a small chance I could pee normally again.

      It took me some time to master CIC. But now I'd rather CIC than deal with complications from a surgery or side effects from medications. Yes, sometimes it's inconvient, but it pretty much allows me to live a normal life. For those who cannot do CIC, I'd suggest a suprapubic catheter. Either way gives you more time to research your best treatment option.

      Stebrunner

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    • Posted

      Thanks for the info - OMG 7 liters that is hard to believe! Yeh I can do self cath and Jimjames has been very kind giving me encouragement and tips.

      Michael

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    • Posted

      Mike that is true.  Fixing the problem is a good way to go but sometimes the problem is not the prostate.  With the urolift it opens you up to pee better but his problem may be his bladder.  There have been many men on here that the doctors start cutting away at the prostate and the bladder is the problem.  Urologist have a thing that if they can't find what is causeing the problem they assume that it is the prostate and they tell you that you need surgery.  So you have your prostate cut out with turp or holep and they you still have a problem and have to do CIC.  Never do anything until you have all the test done.  Because once your prostate is cut away at there is no getting it back.  Take care  Ken  PS  you can fix your bladder with CIC  Jim did.  They wanted to do a Turp on him and he started CIC  He is great now it just takes some time.     

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  • Posted

    If you can afford PAE it might be worth trying, if you want to fix the issue quickly do the Holep or similar surgery. The problem I see with PAE is that it works well for some straight away, and others it can take weeks or months even - so if you are in the second group you will probably need a catheter anyway and have to go through the process of taking it out every couple of weeks and testing if you can pee. Do you really want to go through all of that ?

    Some people reported amazing results, but it doesn't work for everyone, they claim over 90% success, but I don't know how they define success. It sounds like you are in a bad place, so my 2 cent's worth is to get it done quickly and probably something like Holep will be more of a guarantee - you will probably have retro ejaculation but otherwise be very happy.

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    • Posted

      Mike, thanks, that is exactly my concern, how will I know if PAE will work? Well of course nobody knows and as you say it is trial and error over some period of time. Next Tues I am seeing another urologist about going onto PAE but if that involves more weeks/months of delays etc then I will do HoLEP, privately, the waiting time on NHS is 17 weeks!

      I have been researching the success rate for PAE and it is certainly not 100%. Whereas my surgeon does claim over 350 HoLEPs at 100%, so there we are it is tempting for sure. I much appreciate everyones input as well.

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    • Posted

      Ian I know nothing about Holep, I assume it's some kind of laser going into the penis and just blowing away the obstuction, part of the prostate - that is why I believe 100% effective, but having said that they mean you will pee for sure 100%, not sure if they mean no chance of retro or erectile disfunction. Usually what Urologists have told me, when you hear about say 5% chance of erectile disfunction it's because men in their 80s are more likely, not younger. If you want no delays go to Portugal for PAE - but remember, there is delay until you get it done, then since you can't pee now you will definitely be on a catheter I'm guess a minimum of 2 weeks after PAE. Since your prostate is so big they can hardly even get in a catheter by normal means, chances are the surgeon won't even want to do PAE because the embolization causes swelling for one week. If retro is a big concern it might be worth the discomfort - I had a Foley for 7 weeks, I think the first week or two was the worst, after that you kind of get used to it. There is another surgery called Rezum which seems to be picking up in the USA at least and might be suitable for your case, they claim no side effects and minimally invasive, though some people here are angry they ended up with retro.

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