After doing some research, PAE seems like a good starting point with minimal risk. But so many on this forum seem to have poor results. Does anyone have success with PAE? I tried to search "PAE" on this forum and the search results do not work well, so I decided to start a new post. Thank you, John
Hi John,
You say, " PAE seems like a good starting point with minimal risk".
Have you tried, or has your doctor mentioned self catherization (CIC) as a good starting point?
Not minimal risk, but for all practical purposes, no risk, with functional results as good as any surgery.
Many here, including myself, have found success with CIC. While it may not be for everyone, I can't see why it shouldn't be a "starting point" for everyone given the low risk.
If you're interested, check out the threads here on CIC, or just ask and I'm sure many of our members will help.
Jim
The problem I see with CIC is that it's not curative, whereas PAE has a chance at being curative. Maybe that's why the OP wanted to look at it as a starting point.
I'd also like to know the success rate. Can you create polls on this board?
Hi John. I was set on pae. Consultant said it takes 6 weeks due to initial radiology survey, then the procedure and the later scan to see the results. Also be said it was only 70% successful. He recommended UROLIFT as it was virtualy an instant fix so that's what i did. The procedure took 10 minutes with 3 implants and minimal pain and the urethra was totally cleared. However, the urination process didn't imorove much as my bladder was trabeculated ( lost elasticity) due to pushing pee past prostate constriction for the previous 3 years. I therefore wonder if any of the prostate fixes will be satisfactory if the person's bladder is unable to expand and contract as normal. I would recommend asking the urologist about the state of the bladder during the cystoscopy and what outcome he expects. Good luck, Geoff
Jim
You are the best source of knowledge on CIC on this forum
My comment is similar to Doug's in that CIC is not a cure. If a man has a 175 cc prostate today that grows to 300 cc in 10 years, will CIC still work?
What happens when a man is 65 and healthy and does CIC but finds himself frail and largely incapacitated at 80? Unable to do CIC, what is he left with?
Looking for a "cure" is to free a man and improve his QOL
Some procedures have low recurrence rates. Even TURP, which has obvious negatives, is relatively successful in relieving LUTS for up to 10-15 years
PAE and FLA lack long-term data and RCTs to back them up.
What does a guy do if he self caths and is driving across the US on vacation or taking a cross Atlantic flight? Does he self cath in a tiny airplane lavatory? What if there's turbulence? Does he do it in cramped and dingy gas station rest rooms?
Hypotheticals, yes, but as with any option many questions must be asked.
And most men probably don't have the stomach to CIC. I would like to try it Jim, and if I did you would be the first person I reach out to. However, I get nauseous just thinking of doing it. I admire your courage
My uro said my prostate is too big for CIC at 120-130 cc
Nocturia is affecting my health . At 60, I need to do something.
I was all for PAE but it has mixed results for median lobe and it's a high single radiation dose.
I have some other questions. May I private message you?
I'm just so afraid to try CIC. My wife probably couldn't help me.
My Uro can do a simple prostatectomy and it probably won't return to 130 cc during the remainder of my lifespan. That is major surgery.
Urolift and REZUM are for smaller prostates, and won't help for > 120 cc
Thanks Jim. Michael
At the time I went to have my aortic valve replacement I had prostatitis and the theatre staff could not get a catheter in and fitted a supra pubic one. At the time my prostate was 135grms plus any swelling from the infection. If they could not a catheter in does not happen to individuals at home ?
I'm a total success of PAE. Had a 120 g bleeding prostate. Terrible nocturia, 3 full retentions, traveled with a pack of catheters, which didn't help much. Had to go to bathroom every hour or even more often. I wrote more than 50 posts here. Read them....CIC IS GOOD ONLY FORVTHOSE WHO TOTALLY LOST ELASTICITY OF THEIR BLADDER WALL. They still risk full retention at older age an increasing obstruction. IT's playing with fire for mo obvious reason. IT WILL END UP WITH OBSTRUCTION AND INCONTINENCE. PAE SUCCESS DEPENDS MOSTLY ON THE OPERATING IR AND HIS TRAINING. PICK A GOOD ONE AND HE WILL CURE YOU. IT MIGHT LAST ONLY A FEW YEARS, but can be repeated. RADIATION DOSE IS INSIGNIFICANT IN COMPARISON TO WHAT PATIENTS GET DURING THE RADIATION THERAPY AND WILL INCREASE YOU CHANCE OF LIFETIME CANCER FROM 52% to 52.5% at our age of BPH SUCCESS US MUCH HIGHER THAN 70%
Michael,
I completely agree with you about the CIC. I was able to do it a few times some years ago in an emergency situation, but tried it a month before my bipolar TURP and was unable to get the catheter in more than an inch - just too painful. Can't imagine doing this on a regular basis. I just wanted a procedure, then a period of healing, then return to my life. Had a PAE but due to median lobe issues,it was only slightly helpful for a year. Then, had a bipolar TURP two months ago - actually easier than the PAE, home four hour later, three days of irritation with a Foley catheter, then after that in recovery mode. Now, I can completely empty my bladder but it still takes a few attempts. Only issue I am still having is disturbed sleep - getting up many times at night and never really feel rested.
Having just gone through the TURP I can tell you it was easy for me - I was completely out, no pain after, just the Foley irritation. As with any surgery there was a period of recovery - mostly rest for a week, then a gradual return to my normal exercise program. I would do it again without hesitation.
Tom
Hi John, The vast majority of men who have had PAE had good outcomes. This is in the medical literature and is why so many have tried it. I have had 3 PAE's. The last one two weeks ago. After each procedure I had some relief but no enough to get off the Flomax. I'm hoping this one will make that possible. Had I not had the procedures, I would be permanently catheterized by now. My prostate had shrunken significantly and no longer blocks the urethra which for most men would have solved the problem. I think I may have other issues that are not related to a blocked urethra, and that's what I trying to determine. In my opinion, the PAE procedure is well known now and has a very high success rate with little or no side effects and rapid recovery. The other procedures are much more destructive and invasive. I think that PAE is a good first option before letting some urologist hollow out your prostate like a walnut with a hot wire or laser or steam or microwaves whatever other thing they come up with. Best of luck to you. Bruce
i had pae 5 weels ago and see no real improvement but mus wait 6 months or longer to evaluate im hoping for some improvement as my prostrate was only about 48 we shall see must fine a IR THAT DONE MANY
Did insurance pay for all three PAE procedures ? Were your issues not fully investigated prior to your first PAE to determine what was needed and if that was the best procedure for you ?
Hi Michael,
Never said CIC was a cure or perfect, but that it was a good place to start, which is what the OP was inquiring about.
If we want to play hypotheticals, then nothing will work under all circumstances but, yes, doing CIC in a tiny airplane lav shouldn't be a big deal, it's done by members of the SCI (spinal chord injury) community all the time where dexterity can be an issue.
Being afraid is normal, and part of the problem is that CIC is not promoted and by MDs the way it should be, after all, not very high tech, plus no money in it for them. I was probably one of the worst CIC patients for the first couple of weeks, but now it's like brushing my teeth.
Sure, PM me anytime.
Jim
Hi Tom,
Glad your TURP worked. I'm not anti TURP or procedure, just would like people to consider CIC first, or at least in the mix of things. Often they don't.
Jim
Derek, Just about every procedure there is has stories about successes and failures. CIC is no different but a great place to start IMO or at least to be considered in the mix. Using your example, an obstructive prostatitis would probably stop anyone from urinating, regardless of what procedure they had, but guess what -- the first thing they would try in the hospital would be a straight catheter ie CIC.
Jim
Doug, Yes, PAE has the potential to be curative, for a limited period of time probably, it it also has the potential for sfx including permanent retrograde ejaculation, up to 10% anecdotally the last time I checked here.
Jim
Michael,
A couple of other things. I question if your prostate is too big for CIC. Did he try a straight cath to see? As to nocturia, guess what, in many cases nocturia is not cured by ANY prostate reduction surgery because the cause in many cases, esp when we get older, is not incomplete bladder emptying per say, but the fact that the kidneys empty more at night than during the day which has causes other than the prostate. A good void log combined with PVR testing can help figure out the cause but uro's dont usually don't bother. Then, assuming they know their stuff, they explain to you AFTER your surgery, that your nocturia apparently has other causes. Wonderful!!!
Jim
I was surprised as I had been urinating well enough and continued to after the supra pubic was removed until I had my Thulium/Holmium laser procedure about a year later.
PAE shrinks the prostate by restricting its blood supply but the write up says that it is only temporary : During the PAE, the doctor makes a tiny incision in the groin and advances a small tube called a catheter, to the prostate artery. Microscopic beads are released into the artery, where they lodge and temporarily block blood flow to the prostate, causing it to shrink. Shrinking the prostate can relieve the patients urinary symptoms.
Derek, You are a known skeptic of new less invasive procedures and a proponent of bloody laser or TURP removal of the prostate. If you read your own excerpt from PAE principles description in the medical literature, you will find that the word temporary pertains to the blood supply, but not to the shrinking of the prostate. Of course, prostate will grow again whilst blood supply will be restored due to the so called secondary vascularization of the prostate, but there are published MRI studies (from China) and they show substantial shrinkage of the prostate even 3 years after PAE. Even successful TURP or GL last 5-7 years. Only Simple Prostatectomy lasts forever. Yes, PAE may cause RE permanent or temporary in 10% of cases. Given much less chances of impotence and incontinence and bloodless minimal invasive nature, it will stay as a preferred alternative to TURP and GL. The lack of well trained IR capable of successful PAE is the main predicament.
Hi Gene97713, You are the only success story? maybe more will come forward?
I can't find any of your 50 posts on the topic. A search of your username only goes back 5 weeks and a search of PAE is about the same.
Please post the link or elaborate more on your story. Thanks,