PAE - Has anyone had success?

Posted , 21 users are following.

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

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  • Posted

    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

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    • Posted

      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?

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    • Posted

      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

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    • Posted

      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 ?

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      Why did you PM me a different version of the one to the Forum?

      My PM to you for the benefit of others in this conversation:

      I am not in favour of TURP and waited ten years for a laser procedure to come along.

      Laser procedures remove the tissue that needs to be removed. Laser seals blood vessels and it should in the right hands be blood free afterwards, As I repeatedly state after GL ( that my uro described as a gentle procedure and had been suitable for one of his patients of 92 with a larger prostate than mine) I was back to normal on the second day pain free and only a spurt of blood at the start of urination and that was from my spongy urethra. Traveled home by train on the second day. No retention, no RE and no looking for toilets all the time. On day three I went to the races and was walking around all afternoon. I went to the toilet when I got there drank several coffees during the afternoon and had to remind myself to go before leaving. The Uro who did my GL had only done seven before mine.

      When the blood supply resumes does the prostate not regrow.? I certainly would not have a Urolift when the gland is just fastened to the side and must still grow and Rezum seems not to target specific areas.

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    • Posted

      Derek, Just speculating, but it could have been operator error. Not all cath nurses are the same, just like some draw blood and set lines effortlessly and others make a mess.

      Jim

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    • Posted

      Derek,

      Good to hear your GL was effective. My urology office offered both GL and bipolar TURP. I was told they don't do many GLs anymore because they were not that effective. So, I went with the TURP and my experience was positive.

      Tom

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    • Posted

      Hi Michael

      I had PAE two years ago and no improvement.

      I agree with Jim that CIC could be a first option.

      As Gene pointed out some of us with stretched bladders have to CIC.

      I have travelled for many hours from Australia to US and backpacked for months through Central America using CIC without problems or UTIs. You have to be creative to keep things clean and I can share ideas if anyone asks. Interestingly many young guys were asking for toilet stops on our journeys while I was good for 6/8 hours.

      No one taught me to CIC and I was very nervous but correct technique and plenty of lube and going gently is the answer. There are good videos on it -eg ,Coloplast website.

      I am so thankful for all the great help from Jim James and others on this Forum

      GREG

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    • Posted

      Derek,

      First of all, I sent you PM the same version as posted on the Forum. I just cut and paste. I sent it PM by mistake and an identical version. Maybe added a few words for the Forum.

      Maybe doctors in UK are much more skilled but my Uro in US told me that with 120 g prostate he can't operate on my with GL because it will take too long (probably true). It's not the age but the size of the prostate that matters. Laser can remove only 0.5 g per minute or so. He also said earlier that after TURP or . GL for three month I won't be able to hold my urine on urge.

      You were extremely lucky. In fact the difference between TURP and GL is not that huge. Both remove tissue by thermal ablation. TURP with microwave, while GL with focuses laser light. Both create thermal damage to prostate and surrounding tissue and nerve bundles. Once the amount of the tissue to remove is modest, both are successful. Prostates larger than 80 g require prostatectomy or PAE, PLA or RESUM. Very few Uro surgeons will do TURP of GL on large prostates, larger than 100 g due to the length of the surgery and overheat of the prostate. Not have RE after GL is als very unique. You really were born with a silver spoon in your mouth.

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    • Posted

      " He also said earlier that after TURP or . GL for three month I won't be able to hold my urine on urge"

      Certainly not my situation nor that of GL friends nor others I speak to. I live in a coastal town with a large retired population that is referred to as Gods Waiting Room that is also a major holiday resort so I speak to people on a daily basis and health tends to be a major issue of conversation.

      My GL for 75 grm prostate took 57 minutes lasering time and I have repeatedly said that life was back to normal for all of us practically right away. One was out of the hospital two hours later without a catheter and went back the next day for a his check up.

      Just as well as the rods used in the early GL machines only lasted for an hour.

      My Thulium/Holmium procedure for a 135 grm prostate where he removed 80 grms took almost three and a half hours . I had wanted a spinal but he said that the procedure would take too long for that. Perhaps NHS urologists not being paid by the second are able to take as much time as needed.

      The problem with this and other web sites is that they attract those who have post operative problems. Do please read papers on laser procedures to correct misconceptions on thermal damage.

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    • Posted

      Derek,

      I'm a laser scientist myself and know what lasers do and can't do. Asa physicist I will tell you that the energy from the laser can only dissipate as heat. There is no misconceptions about heat generated during GL or Tu/Ho laser ablation of the prostate. What's interesting that after the GL ablation your prostate has grown to 135 g from practically nothing (25g-30g)> How many years did it take? So, it's not a panacea? Isn't PAE, which stops the supply of blood rich with testosterone to prostate, then, a better solution? Most of the grows is due to the sensitivity to testosterone supplied by the blood from arteries feeding into the prostate.

      I always planned to have Tu/Ho procedure but my US Urologist told me that it's impossible with my 120g-135 g size due to overheat and length of the surgery required. Seemingly your UK trained surgeons are better. Don't complain about your NIH services. Still, the scientific literature that I read regularly doesn't distinguish much between laser ablation and TURP in the sense of the recovery time and complications, except for the bleeding TURP syndrome, which rare now because of the button plasma surgery.

      You are telling us that you didn't have the Foley catheter after the surgery? How many times per night do you get up now? I don't...

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    • Posted

      I had a catheter overnight after GL. I bled more after Tulium /Holmium laser as I had been on Warfarin at the time so I went home with a catheter in as they wanted the bed rather than keep me for another night. It was supposed to be in for a week but due to crossed wires it was two weeks. My output was pinky during that time but crystal clear as soon as it was removed. I was fortunate as each time my median lobe was not a problem and I had urologists who did a bladder neck sparing version.

      It was nine years after GL that I had the Thulium/Holmium procedure and about seven before I started to need to do something about the returned symptoms. Prostates are like weeds and come back and grow again. Where I now live was a TURP only zone said the urologists at that time. However one day I saw a locum urologist who told me that hidden away in the kidney unit and not talked about by the Urologists was an internationally renowned specialist with widespread skills 😃 He works in the UK and Portugal and lectures and demonstrates Thulmium/Holmium around the world.

      HIs list, Treatments, operations and tests Bladder examination by camera (cystoscopy)

      Bladder function study

      Bladder resection

      Cystectomy

      Cystoprostatectomy

      Epididymal cyst removal

      Extracorporeal shock wave lithotripsy (one treatment)

      Penis foreskin loosening

      Percutaneous stone extraction from the kidney (PCNL)

      Prostate Resection (using Laser)

      Prostate surgery (TURP)

      Prostectomy

      Scrotum fluid removal

      Twisted testis surgery

      Undescended testicle surgery

      Ureter stone removal

      Ureteroscopy and fragmentation of kidney stone using laser

      Urethra examination

      Urodynamics study

      Varicocele surgery

      Vasectomy (male sterilisation)

      Varicocele surgery

      Vasectomy (male sterilisation)

      Vasectomy reversal

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    • Posted

      "Not effective in what way?" - in other words, bipolar TURP worked better so they don't do many GLs anymore. Better and effective are both similar words meaning easier to pee, less retention, This could be quantified by a lower IPSS score.

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    • Posted

      Derek,

      This list is standard for any US Urology doctor. Maybe some new Tu/Ho lasers is not available to everybody, as they are expensive. The idea that standard Nd-laser with an KTP crystal (that's what GL is) works only 1 hr is crazy. The rods last 1000th of hours. Ho are a bit more expensive and generate at 2 micron infrared light. They generate more heat and are a bit more suitable for ablation but final results are not very different from plasma button TURP. I'm really surprised how you URO decided to keep you 3.5 hrs in the surgery under anesthesia. He took a lot of risk. US doc will never do it. Calling it a gentle procedure will be huge exaggeration. According to the medical literature, recovery from laser ablation lasts approximately the same time as after TURP. Bipolar or plasma TURP eliminate TURP syndrome due to the toxicity of the cooling fluid and usually require blood transfusion less often.

      If performed by a well trained URO, results are often superior to anything less, but RE and temporary incontinence are almost given. Of course, it's all individual and depends on age, general health, and prostate size the most.

      I'm glad it worked so well for you.

      I will choose for me PAE again, and again, because it worked magic for me and it's less invasive nature. Practically no side effects, no meds, no nocturia, and improved sexual performance. What could be better?

      Take care. Gene.

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    • Posted

      If you read all of the PAE threads, you will see many cases of early improvement but then things revert back to what they were. In fact, durability is one area that PAE needs more research on, at least according to the study that Gene just posted, even though he omitted that important part.

      Jim

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    • Posted

      Gene,

      I missed this post of yours from the other day. I was wondering how/why you could speak with as much knowledge as you do on radiation. Now it makes sense: you're a physicist.

      Anyway, I'm learning as I go. I know you and JimJames have disagreements but I learn from both of you men. I hope I contribute a little to this forum as well, but not to the extent of you men.

      Michael

      Ps - HoLEP is a very difficult procedure to learn/master, but the MDs who are exceptionally good at it probably have much lower % complications than most practitioners. I've read that HoLEP is suitable even for very large prostates. Certainly, PAE is doable for any size gland, which is one of its major advantages.

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    • Posted

      That's probably true, but the percentage is closer to 80%. This not sterilization, though. You sperm is well and alive, it's just goes wrong way during orgasm(which produces absolutely the same senses) and following ejaculation inside the bladder. It could be extracted from your vesicles (containers of mature sperm) with syringe and used for artificial insemination of your partner eggs, if you want to become a father at age of developed BPH (60+ usually) which is almost insane from the standpoint of the chances to conceive a genetically inferior offspring. Of course modern genetics allows to diagnose most dangerous genetically transmitted mutations at early stages (literally at the vial stage of the embryo). It's prohibitively expensive for a layman but doable. So, it's not equal to castration or sterilization, which is reversible in most cases, except chemical and radiation.

      A big difference, but IMHO is much ado about nothing. Really harmless at 65+(and even at 55+).

      Too much attention to RE is paid on this forum. RE vs kidney damage, heart attacks due to chronic insomnia, peeing every 30 min, CIC, repeated retention episodes with 6 hrs waiting in ER for Foley catheter which you need to keep 1-2 weeks with a leg bag... Give me a break. Only people who never experienced all these standard consequences of late stage BPH, which has no other cure rather than surgical, PAE, or avodart that kills your libido and erection and is equal to castration, can theorize about how cruel is to have RE after any of these curing procedures. Come to your senses, gentlemen.

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    • Posted

      Gene,

      Your comment - "too much attention to RE is paid on this forum." After what I have gone through over the past 9 years I would be happy to have any type of E:

      Two 12 core biopsies, severe peyronie's curvature possibly linked to the biopsies, radiation for prostate cancer, trip to ER for SEVERE pain due to total retention after the radiation, six weeks on Foley's waiting for swelling to go down, a few difficult CIC trials, wonderful sex life with my patient wife is gone, then penis numb due to nerve damage from radiation, increasing LUTS with IPSS score of 30-32. Had a PAE, mostly failed thanks to median lobe, a bad UTI after cystoscope then reaction to the Cipro, possible central nervous system damage, then bipolar TURP, better flow but terrible insomnia, frequency and nocturia still unresolved. Now, all I am hoping for is for the bladder irritation to go away so I can get some sleep.

      I spent most of my adult life in perfect health, never smoked, don't drink alcohol, ran 9 marathons, health food, etc. But, my prostate has ruined my quality of life and the issues are still not resolved. I completely understand that many here are trying to preserve what quality of life they do have and don't want to get RE, but you have to keep everything in perspective.

      My cancer is now gone, but could have come back. I might have elected to have my prostate removed, and ended up with lifelong incontinence. Every urologist has different advice. There are tough decisions to be made for all of us, which is why this forum has been a life saver for me.

      Tom

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    • Posted

      Gene...... Doing nothing about BPH because someone is afraid of RE then having all some or all of the horrible consequences that you mentioned is indeed foolish . However normal ejaculation is an important part of the sexual act for some men over 55 so those men are here researching the procedures that have the lowest % of RE. Nothing foolish about that. If RE means nothing to you that's fine but please don't discount how much normal ejaculation means to some men and their wives even after 55.

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    • Posted

      PETE,,

      Being rich is better than poor, and so on. RE COULD HAPPEN DUE TO TAKING FLOMAX, ORHER BETA-BLOCKERS. AVODART (widly advised and prescribed) CAUSES impotence and kill libido. MANY ON THIS FORUM TAKE IT TO SHRINK THEIR PROSTATE BY 10-20% TEMPORARILY .... MOST OF TH TREATMENTS OF THE PROSTATE CAN DAMAGE THE SPHINCTER AND CAUSE RE. I EXPERIENCED RE, WHEN TAKING FLOMAX. IN MY OPINION, THE STRENGTH OF THE ORGASM DOESN'T CHANGE. IT'S IN THE HEAD AND RESULTS IN SPASM AND CONVULSIONS OF THE PROSTATE. THE ONLY DIFFERENCE, THAT THE SPERM IS EJACULATED INTO BLADDER RATHER THAN UTETHRA. LESS MESS. MOST WOMEN WON'T EVEN NOTICE. LET ALONE, THAT AFTER AGE 55-60 MOST MEN PRODUCE MUCH LESS VOLUME OF SPERM IF HAVE BPH. OF COURSE, AS ALWAYS IN MEDICAL, HEALTH ISSUES EVERYBODY IS DIFFERENT. IMHO IT'S THE LEAST SEVERE AND UNPLEASANT CONSEQUENCE OF ANY BPH TREATMENT. MUCH LESS THAN DOING NOTHING AND PROCRASTINATING. THATCWAS MY SUGGESTIONS AGAINST MEDS AND CIC(except when bladder already extended irreversibly due to procrastination). MY SUGGESTION IS TO BE PROACTIVE, CHOSE THE LEAST INVASIVE PROCEDURE AND CONSIDER RE AS THE LEST EVIL IF COMPARED TO ED AND INCONTINENCE.

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