PAE and the search for answers
Posted , 12 users are following.
Hello,
They tell you it's natural to have BPH. But in my late 40's it didn't feel natural at all and a lot of men just don't get BPH. So like a lot of you, I started an internet quest for information. I researched BPH treatments for at least 10 years or so concentrating on non invasive treatments. My Uro told me he could do Green Light laser and that it could cause RE but said "it's no big deal"... I looked up RE (retrograde ejaculation) and was stunned... How in the hell is that no big deal? No big deal for him. He's seeing dollar signs and cant wait to bill my insurance for thousands... I decided to look at non invasive procedures. I spent a lot of time looking into the Gat-Goren method for treating BPH which still seems to be the real cure to me. But, there is something mysterious about the why their "cure" hasn't spread world wide. They basically found that BPH is caused by one or more varicoceles in the veins of the system leading to the prostate. This causes a back-flow of testosterone into the prostate , something like 10,000 times too much, basically bathing it in testosterone and causing BPH. They basically fix the varicocele's by embolizing them and that's it. The prostate gradually goes back to it's normal size. There are many people around the world who've had it done including the Israeli prime minister. I assumed when I first heard of it that it wouldn't take long for it to be "the" cure for BPH and it would spread around the world. That never happened. I believe they still do the procedure but it costs somewhere around 25 thousand US. I have no idea why this procedure has stalled as far as being adopted world wide. Maybe it's all a hoax? I don't think so but there's other factors involved I guess. While I was looking at Gat-Goren, I started to look into PAE. I watched for a few years as the studies came in. In the meantime my BPH was getting worse. My flow test(forgot the proper name) was not good... I think the score was an 8. My uro said I was peeing like and an 80 year old man. I was also retaining urine. But my prostate wasn't massive like other guys. It was around 55 grams. I had to dehydrate myself before going to bed to make it 6 hours which I could do once and a while. I had to usually get up twice a night. I know a lot of you have it much worse. I didn't want to take any drugs though. Things started to get worse . I called Dr. Bagla about a year and a half ago and talked about the PAE procedure. I made a date. What I like about PAE was the noninvasive factor and the fact that it doesn't preclude you from getting other procedures in the future(Gat-Goren?) and it can be repeated. The side effects are minimal to none. I postponed the procedure after reading that patients could be exposed to too much radiation. I called Dr. Bagla and read up on it. It turns out the radiation is minimal. I think a lot of urologist spread disinformation about PAE. Anyway, I had it done 5 weeks ago(at age 56) and all is good. Peeing very strong, no stops and starts....holding it better and it's supposed to improve even more for the next few months. Turns out my prostate was only 50 grams. Twice normal size but not as large as a lot of guys on these threads. I think the success rate is slightly better with smaller prostates. I read of a lot of treaments on this thread and I wonder why would you go with a procedure where you have something put up your penis and manipulated and take a chance of getting RE and a lot of other side effects when you could have PAE done first? PAE should be the first line of treatment for most of you and probably would be the last. I wouldn't let a urologist go near my penis unless I was half dead. I understand the hesitation to do anything when it comes to ones private parts. I won't go into PAE details here. There's been a lot written about it in these threads and there's a ton of info online about it. Don't let a urologist talk you into something. Do your research and make the right decision. Good luck.
0 likes, 23 replies
kenneth1955 tgt111
Posted
Good evening my Friend
First of all I want to say thank you. I have been trying to get guy's to do there research before they have a procedure. Every man is different so not all procedures are for every man. Good for you on not being talked into the Green Light Laser. Yes most of the procedure that cut away at the prostate will cause retro. And what that doctor told you is what most doctors believe. Also some do not feel it as a sexual function. They feel that we are older and not having any kids so we don't need it. Or they tell you it will feel the same. Not all the time and Retro sucks.
I like you feel that no man should give up anything just to pee better. That is way I had a Urolift done 3 1/2 years ago. Still wide open. No side effects at all. And I like it that was.
I wish you good luck with your procedure. Heal well
Have a good night................Ken
keith42667 tgt111
Posted
Sounds like you made the right decision. I'm in my middle 60s and have had this problem since about 2015; at least noticeably since then. I think I was having urgency and retention problems.. frequent urination etc. longer than that but I thought it was normal or just for some other reason. Then it got bad.
I think the main problem with PAE is that its not available everywhere and I'm not sure if my insurance covers it. I'm on medicare. I went to a urologist in Boise in 2017 and he wanted to do GL on me also. There was a pre-op appointment but I'm not sure what we were going to do in that appointment. My surgery was scheduled for the following week so it appeared to me that he had decided to do GL with doing nothing more than a DRE. I've never taken any drugs nor had a cystoscopy. I was going to go through with it but, while I was waiting for a couple of weeks I had to self-cath because I was having overflow incontinence and retention. The cic was working so well and I took to it so easily... and I felt SO MUCH better to drain my bladder completely that I thought " how nice would it be to just do this indefinitely until I check this out some more. So I put the brakes on that GL procedure and I'm still cathing a year and half later. I like having the control and I get the catheters for free though medicare and my medigap insurance. Not a bad solution compared to GL. Perhaps PAE will become more common in the near future even though it worries me to clog up arteries. Isn't that how they do it basicly? What if they inject these little crystals into the wrong artery or vein?
gene97713 keith42667
Posted
Keith,
Medicare B covers PAE, but if you have exchanged it for Medicare Advantage, most likely your HMO doesn't. I have the CPT codes for PAE covered by Medicare. at least since 2017. That's why they want us all to switch to a cheaper Advantage plans. Yes, it's cheaper than Medicare B but takes you back to medieval medicine level or no service at all. You will need a Medigap insurance to cover the 20% cost that Medicare B leaves uncovered. It could be sizable for PAE. My bills are in the $75K range.
Regarding TGT comments on Gat-Goren research and proposed procedure. Gat-Goren procedure is nothing but PAE. They invented and justified it by research, but it commercialized and extended in Portugal and Brazil. Of course there a different approaches to PAE (one-sided, two sided, PeRFeCTed PAE, etc.) and extremely well trained and knowledgeable IR is needed for full success and avoid wrong arteries or capillary embolization. The radiation is not minimal, it;s substantial but won't kill you right away. It depends on the doctors skills, quality of arteries, and X-ray apparatus used. Conic X-ray produce the best resolution during PAE but give the most exposure. I've read on this site that one IR offers PAE on a low radiation X-ray machine with image improvement. Research it online. It's possible that he doesn't accept Medicare but this is unlikely. Any research facility accepts Medicare as a part of conditions for Government funding. Only some for-profit treatment centers won't accept Medicare B insurance. It's quite conceivable that Idaho doesn't have an IR trained in PAE, but there are practicing IRs a in WA, OR, especially in AZ and CA, where I had my PAE done by Dr. Picel in March 2018. They accept Medicare B Insurance. You will have to travel, though, and first 5-7 days after PAE might be unpleasant but very bearable with Ibuprofen. In exchange you will get a new quality life with practically no side effects.
PAE is not widely spread due to the cost, lack of well trained IR at HMO facilities and most US Hospitals, not because of it;s inefficiency. It will the first choice for men with larger prostate when more IR will learn it and URO (AUA) will stop to defy the innovative minimal invasive procedure which potentially can threaten their existence and livelihood. IR start to use it for late inoperable stages of PC.
And finally, GL is oversold by laser manufacturer. It's not much better that TURP in post-operative effects and recovery, saves a day in hospital and eliminates some risks (so called TUR-syndrome).
Look for a well trained PAE provider.
Remember, though, the results of PAE are less dramatic when compared to other invasive procedures, but comparable in size and lasting time to UroLift.
tgt111 keith42667
Posted
PAE is now FDA approved. My insurance covered it. Out of pocket with no insurance could be 6k or more, I'm sure some dr's will work with you. Lot's of recent studies have come out with good data showing it to be effective. The longest term in the studies I think was 10 years. The beads they use to embolize are inert and they actually don't go in to arteries. They are carefully inserted into capillaries in certain parts of the prostate reducing the size of the prostate by 25 to 30 percent. The procedure has been around for at least 15 years or so. The radiologist uses contrast dye with a scan of the prostate to pinpoint exactly where the beads will go. It's no crap shoot at all it's very exact. The parts of the prostate that are embolized die off over time causing the prostate to shrink. Your prostate is too large anyway(hyperplasia) and shrinking it properly is a good thing. All of this information is out there on the internet and there's a ton of misconceptions also.
kenneth1955 keith42667
Posted
Keith
I'm glad you waited. That was wrong and to fast. First step is not do surgery. A doctor tries you on medication first before any surgery. It is on the guide line of the insurance company. PAE are good for some people. But not all procedures are a good fix for everyone. I was reading some information on PAE. They do a test on the computer. They do a outline of your body and do the procedure on the computer first before they do it on the patient to make sure it is being done right.
I had a Urolift almost 4 years ago. Still wide open. That is what I pick for myself. No side effects at all
Have a great day and relax.....................Ken
Lvscott keith42667
Posted
I sent this question to the wrong respondent - This is for Keith - What specific caths do you use?
tgt111 gene97713
Posted
I talked with Dr. Bagla about the radiation issue. He said it comes down to the machinery and the Dr doing the procedure. The Dr can be selective with the radiation(can regulate it somehow) and also somewhat faster with the operation than someone with less experience. That's what I meant by minimal. If it's much more of a health threat than I thought.. well, he duped me then. I really don't completely trust any of these Dr's...Also, I think the Gat-Goren procedure though having some similarities to PAE is different. It deals with sealing the varicoceles(embolising)... They don't go into the prostate. They stop the backflow of testosterone into the prostate.
Lvscott tgt111
Posted
What specific caths do you use?
tgt111 Lvscott
Posted
Even though I was retaining some urine, my uro wasn't concerned about it. So I never did the cathing. I'm going to have some tests in a few months to see if I'm still retaining. So far, things have improved a lot.
spr tgt111
Posted
Also PAE was FDA approved in JUly 2018 in the USA. I found a guy in Dallas Texas who is checking to see if my insurance will cover it--or at least apply to the deductible. A study (limited under 20 patients as i recall) showed big prostates over 90 grams showed a 30% decrease.
One case guy had 250 gm prostate and shrunk to 165 gms. So big prostates can also profit.
Glad you are happy with your results and thanks for the pep talk.
Also interesting about the Gat-Goren treatment- been around since 2008 but does not seem to have made much inroads in the USA at least- seems Mayo clinic may be thinking of using it for prostate cancer--and maybe BPH
Steve
tgt111 spr
Posted
Yes, PAE works for large prostates. I asked Dr Bagla if I should wait because I knew I didnt have a huge prostate and wasnt as miserable as others. He said basically the sooner the better., that there's better outcomes when done earlier. It works fine for very large prostates also maybe just slightly less so because of the size... It amazes me how guys are walking around with 100 gram plus prostates at all. It just shows you symptoms are highly individual.
I have no idea whats going on with GatGoren. I think its been around longer than 10 years. Its not worth 25k to me when PAE is available. and covered by my insurance. The science seems very logical. I thought it was a cure. But it hasnt taken off like PAE. Maybe they haven't published enough . If that changes, its still possible to do it in the future.
Bobcats tgt111
Posted
Great News! I was anxiously awaiting your report. Can you tell us about recovery time and if any issues with physical activity, such as the gym?
tgt111 Bobcats
Posted
recovery time was brief. The first 2 days after I was sore and my urine was somewhat red from medicine and bleeding. You're on antibiotics and anti-inflamatory meds for a few days.. If i was doing office work, probably could've gone to work 2 days later.. So its the procedure day and the day after for some recovery.. The gym etc, I would say a t least a full week(7days) . I was passing blood for a few weeks here and there. The same with ejaculation..a little blood.. Its normal as tissue dies off. In the 6th week now.. According to the procedure, I have another 6 weeks to go for improvements. So far so good. It still feels like im holding some urine and i'll check into that. It might take longer for the bladder to "go back" . Even if it didnt, im happy with the results so far.
tom86211 tgt111
Posted
My situation and yours are/were very similar. My prostate size was 56gm, had many issues with retention (PVR 170ml), nocturia, frequency, urgency, so after extensive research over a couple of years decided to go with PAE. It was covered by my HMO insurance (Kaiser). Actual procedure was easy and pleasant. Only thing I didn't like was lying in bed for hours after to avoid bleeding of the right femoral artery insertion point. Some have the catheters inserted through the wrist, but I am 6'1" tall and this meant the distance from the wrist to the prostate was too far. While in the hospital bed recovering my bladder kept filling up so I asked for a Foley catheter to drain my urine - what a relief! Operation started at 8am, 600ml drained by Foley at about 1pm.
My recovery over the next week was fast - some increase in pain while peeing - doubled up on Flomax to help and took some Tylenol. Not a big deal. Unfortunately, the improvement in my flow was only minimal. Also, and there was a surprise side effect, I stopped getting erections. This has been discussed on this forum before, but it's possible that the PAE cut off blood supply to some nerves that control erections. I will never know. All I know is that before the PAE I had erections, but after, none. I can't prove that the PAE was the cause of this condition - will never know for sure. Before my PAE I read everything I could about it and possible side effects. There was not one mention, ever, of any potential sexual side effects.
There are many who participate in this forum who have had excellent outcomes from PAE. I am not one of them. I went with it as my first line of treatment because it seemed to be the one that had the fewest side effects and fastest recovery time. In retrospect, the procedure and recovery were easy, but results and side effects were not as I had hoped for. I have no doubt that my prostate has been reduced in size from the PAE, but that hasn't helped my urine flow. My uro tells me now that he doesn't think my prostate is the reason for my issues, so if my bladder muscles are "tight" and are/were the cause of my issues, then why didn't my uro tell me that before I went through with my PAE? And, this leads me to another very important point: if one's urinary issues are NOT being caused by one's prostate but are caused by bladder outlet issues, then this should be clear before moving forward with any procedure that touches the prostate.
Tom
tgt111 tom86211
Posted
Well, I hope you can figure it out and get your erections back. I've never heard of that side effect.. .Do you get erections with chemical hdlp, viagra etc? I would research the hell out of that issue....Is there a bloodflow test etc..? .Thats the thing about possible side effects, if it happens to you, even though the chances are remote, its 100 percent effecting you. I didnt mention it but I had the opposite happen. I started getting more natural erections. And I never felt like I had a problem before....You just get less frequent ones as you get older...The frequency has picked up. Thanks for sharing. Its all about the information
Lvscott tom86211
Posted
" if one's urinary issues are NOT being caused by one's prostate but are caused by bladder outlet issues, then this should be clear before moving forward with any procedure that touches the prostate."
Right, which is why Cystoscopy and full urodynamics are are must BEFORE any procedure is discussed. This is indicative of a greed based medical system, with little to no care for the patient. Primary bladder neck obstruction is often missed and prostate is the assumed culprit. Without clear evidence of the prostate blocking flow, any uro who insists on moving forward is garbage in my strong opinion.
Again - they make the money, and sadly, the majority of 'these people' can care less about your outcome.