PAE DISAPPOINTMENT JOURNAL
Posted , 16 users are following.
Hello everyone,
We have seen many posts that praise the success of PAE and to those guys I say congratulations and continued good success.
But for many of us who have undergone PAE procedures the results have been less than stellar. So I am starting this thread for those of us to record our disappointing experiences with PAE. For many of us it may just be that we had unrealistic expectations for the outcomes and that as time goes on we will see the promised reductions in our BPH symptoms. But for others that time may have already passed.
Maybe by compiling all our experiences we can start to see a pattern which may indicate why some PAEs work and others do not. So I am asking all you pioneers out there to give a brief history of your BPH and where and when you had your PAE and how it was performed and what you are doing now.
So I'll get the ball rolling:
I am 67 and have BPH for 20 years. For 10 years I have been on Avodart and Xatral (alpha blocker). I have had 3 12-core TRUS biopsies over the years all with negative results. My prostate has grown to almost 300gm over this time but an ultrasound and cystoscopy showed no median lobe or other bladder neck obstructions. My PSA stays in the range 5 to 13.
My urologist had been chomping at the bit for many years to do a TURP on me but I refused. A few months ago I had to start intermittent self-cathing as my PVR was 350 ml and my bladder was showing signs of hypertrophy. With no sleep or energy for the last 5 years I was actually booked for a robotic simple prostatectomy to end this misery this past June. But I learned about PAE from this forum and decided to give it a try. I chose Dr. Isaacson at UNC as he told me I was an ideal candidate for PAE (very large prostate and no median lobe). So I had it done 5 weeks ago through the radial aretry in the wrist. The procedure was a great technical success (easy arteries and bilateral embolization). But I had no discomfort afterwards which is a bad sign since necrosis should cause some pain. And in the past 5 weeks my BPH symptoms have progressively worsened to the point of incapacitation. Why? I don't know as everything was textbook perfect.
So there's my entry. Please tell us your story too and maybe if enough guys respond we can start to form some conclusions as to why some PAEs work and others don't. Mine may still kick in given enough time but then so many men have had great responses within a few weeks with much worse prostatic pathophysiologies so there must be other factors at work.
All the best to all of you.
Neil
2 likes, 83 replies
nealpros Howard31850
Posted
I had one done last December. Things got better after a month or so, and then slowly rolled back to about half as bad as they were before the PAE.
My prostate was about 80 before the PAE. I also have one very small artery supplying the left side of the prostate, and a normal one on the right. Dr. Isaacson got both of them.
I'm currently planning another one November 3. I'll report how that goes. Dr.Isaacson says that this time he will be more aggressive and go after much more than the two main arteries that send blood to the prostate. We'll see....
I think that this idea of reporting results is great. Why not also include PAEs that work, so we can see under what conditions it works?
Neal
Howard31850 nealpros
Posted
Thanks for your entry Neal. You are right about including the successful PAEs as well. I know this not a scientific survey but it may help to collect our experiences in one place in an objective fashion ( "just the facts ma'am" ) and see if any patterns emerge. Good luck with your second PAE. I hope more guys respond - so far it's just you and me. Neil
Howard31850 nealpros
Posted
richp21 Howard31850
Posted
What is the difference between the tow approaches? Thanks!
richp21 Howard31850
Posted
Make that "two"
nealpros Howard31850
Posted
Neal
Howard31850 richp21
Posted
Hi Rich,
The traditional approach for the PAE has been to go through the femoral artery in the thigh since it is close to the prostate and easily accesible. They call it TFA for Trans Femoral Approach. Recently some IRs, like Dr. Isaacson has been experimenting with going in through the radial artery in the wrist (Trans Radial Approach or TRA). It has some good advanatges the best being that the patient can get up and go right after the procedure once the compression ban on the wrist comes off. Otherwise, the patient usually has to lie flat on his back for several hours afterwards until the opening mad in the femoral artery closes to avoiding bleeding to death. But the TRA approach is more intricate and requires very long catheters to snake through the arm and chest to get to the prostate. Also the doctor works from the left side of the patient which is awkward for him. In my case, my arteries were perfectly defined and easy to navigate resulting in a successful bilateral embolization - couldn't be easier and my recovery was almost instantaneous. But my clinical BPH symptoms are no better after 5 weeks. I will have an MRI tomorrow at UNC to see what is going on - if anything. Take care. Neil
richp21 Howard31850
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alan86734 Howard31850
Posted
Hi Neil, I think this is an excellent idea! Once there is a reasonable build-up of case histories some distinct patterns should begin to emerge. At present I am not a candidate for any PAE procedure, but I do have one observation which I will submit to the Group for a general critique and feedback.
Last week I went for urodynamic testing. I completely messed up by arriving with a very full bladder and a crying urge to urinate, instead of the “comfortably full bladder” as requested. Nurse came to my rescue by taking me to the procedure room without delay.
Now, here is the significant part: the walk to the procedure room took us less than a minute yet, when we got there, the violent urge to pee had completely gone! If asked, I would have answered, quite truthfully, “no, I’m all set for the next hour or so.” I sat down on their special commode but could not void even a drop; I could not void because I had no urge to void. I was immediately cathed and total urine was measured. Unfortunately this figure was not copied into the data sheet I was given upon leaving. I can certainly get the missing item, if anyone is interested.
Turning now to the issue of painful urine retention so often reported, I accept this as fact, based on the sheer number of complaints, but since I myself have never suffered from retention due to a physical blockage in the urinary system I have no choice here.
So, some patients suffering from urine retention experience pain while others do not; why? An understanding of the mechanisms at play here might appear to be “off topic” but they will still strengthen our understanding of the PAE process, particularly in those cases where results did not go quite as planned.
alan86734
Truthmatters Howard31850
Posted
Hi Neil,
Good idea. I have written about mine in another thread but having one like this should prove useful for anyone contemplating or indeed already has had one.
I had mine done in Colchester (UK) last November as part of the ROPE study by a interventional Radiologist who had trained at Southampton and hadn't done many but was supported by a colleague who had done more. I don't have as much data as some of you but can tell you that my prostate was about 70g before PAE and was down to 36g by the 6 months MRI scan. My flow rate has improved dramatically pre and post but can't give you the figures. I've gone from an average of getting up 4 times a night to an average of once a night and that took about 3 months to settle down, so hang in it does take time. The procedure itself was relatively easy but post procedure I had a torrid time. I had to stay laying down for 5 hours and although given a bottle I just couldn't do it lieing down in a bed, psychological maybe but nevertheless very, very uncomfortable and don't know how I got to the wheelchair commode before finally relieving some of the discomfort. That night I could not sleep at all for the discomfort and the constant pain in my midriff. At around 2 or 3 in the morning a duty Urologist came to see me and discussed with me what was going on. He said he would do an ultrasound and if my retention was high (400+ml) he would have to catheterise. This scared me as I have not had to have this done, ever. When the scan was complete he said I had 120ml in my bladder and was at a loss why I ahould be in such discomfort. I was prescribed pain killers and that was that. I now believe I have worked out what the problem was; constipation. I had not gone as I usually would on the morning of the PAE so was coming up to 48 hours by that evening. I was eventually given laxatives to take home with me and to save you all the gory details I will just say I have never gone so much in my life once they kicked in. My advice to anyone having PAE is to make sure you have an empty bowel, I believe before an operation this is standad anyway but being such a simple procedure that you are awake for they didn't bother with me, big mistake. It has therefore coloured my experience a little as I have no idea what the discomfort I experienced was actually down to.
Nearly a year on my symptoms of BPH are still above my "normal" 20-40 year old self, but considerably eased in comparison. The thing that surprises me most is how variable it can be. Some days I can go through as if I was back to my prime others where frequency is greater, sometimes the flow is excellent other times not so, particularly at night or if I have to hold on for a long time. This does seem to trigger a slow down and a little more stop start and I can sometimes feel that their is some retention. There is no doubt that drinking coffee and most of all Beer will have me urinating a little more than usual but you would expect that. I feel sure that if I gave those up I would probably improve even more, but that isn't going to happen. The bottom line is if this is as "bad" as it is ever going to be I would take it all day long and if my experience is something that could be guaranteed to all Men I would say do it without hesitation, but of course I can't, because we are all different. I can also tell you what I believe but can't prove and that is the earlier you have a PAE, just as you are starting to experience BPH symptoms, the better the outcome. I believe this because I'm convinced the longer BPH is left the more damage it does to the bladder making it very difficult to recover. This might explain some of the difference in outcomes reported. If nothing else I am hoping that the PAE will buy me some time until something else is developed that can really guarantee a return to "normal". As it stands I would urge someone wavering about the options, if you are suitable for one and in a position to have one, do it. There just doesn't seem to be a downside and it doesn't preclude other options if you do, it's basically a shot to nothing.
Howard31850 Truthmatters
Posted
Were you on any BPH drugs before your PAE and were you able to get off them afterwards? Thanks again and good luck.
Neil
Truthmatters Howard31850
Posted
Hi Neil - I did have a very short period of using Tamsulosin a few years before the PAE but was disappointed by the lack of effect other than the side effects, came off it very quickly and just decided I would put up with the symptoms. Eventually of course they could no longer be easily ignored as it was beginning to have socially intrusive consequences, not least the nocturia, which was becoming depressing. I had done some research on BPH symptoms as my Father had gone through this 10 years earlier, back then I was aware of the horrendous issues surrounding a TURP and determined he would not go through that if there was an alternative. I came across a US company that was using a green light laser for BPH and contacted them to see if there was a UK facility. They put me in touch with an importer in Wales who in turn put me in touch with a Urologist in Canterbury, not that far from where my Father lives. This experience was important as it alerted me to the mediaeval nature of male urology. It was a chance heard item on a radio programme that alerted me to the "experimental" PAE and mentioned the ROPE study. Quite frankly I blagged my way onto it by contacting the study HQ, funnily enough based in Wales. They mentioned that my nearest centre was Colchester and gave me the name of the Radiologist. I don't live in the County, which caused other issues that I won't bore you with, but a conversation with Dr. Arun got me into the study. I think they were only funded for 10 and I was something like number 8 so I was extrordinarliy lucky to get in, the study ended in December last, my PAE was Novemebr 5th. Phew! I will have another MRI in November and fill out another Urinarly Flow chart over 3 days, where I weigh my output and chart the input as well. I have to also fill out a IPSS questionnaire and undergo a Qmax flow test along with a follow up meeting with the Urologist, yes I still have to be "supervised" by a Urologist. That will then complete my participation in the study. The following year all the data from the participants will be crunched and hopefully the results will influence the procedure to become approved as safe to be carried out under the NHS. If that happens I predict it will have the most extraordinary effect on mature Men's health for generations. It should also provide the "big data" the procedure needs to assure other countries to provide it and probably help to fine tune it for the wide range of BPH problems.
One final observation and principally for our American cousins. Although the Urologists in the UK may have been a little suspicious of PAE because it is an interventional Radiologist that performs it. Because they are employed by the NHS there is nothing like the resistance to it that I've learned about from your experiences. The Urologist I have been seeing as part of the study has been open minded and keen to learn about new procedures in general, he himself is undergoing training for the Urolift procedure, ironically in the County I live in. Maybe you can explain to me why the citizens of the USA are so against something similar to our NHS? It isn't perfect and is currently undergoing a lot of financial turmoil, although to be fair I can't remember a time when it wasn't
.
I know what the misery of our condition can be like, mercifully nowhere near as bad as some, but I don't see why how much money you have should determine whether you can find relief.
nealpros Truthmatters
Posted
The problem in the USA is not that the citizens don't want a good, we'll funded national health service. The problem is that the physicians and the big drug and medical equipment companies don't want it.
Neal
nealpros
Posted
I should have written "the thinking citizens ". The rest are being led by those special interests.
Neal
Truthmatters nealpros
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But when Obama tried to extend Medicare wasn't it howled down by many more than that group, seems to me if the citizens want it they could vote for a politician that says they will do it, no?
nealpros Truthmatters
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Don't forget that many are Republicans who don't think, and who were educated in a Republican (un)funded education system.
Neal
Howard31850 Truthmatters
Posted
Thanks Truthmatters for your response. I have to agree with nealpros here from my own experience. I was born and raised in Canada but worked most of my life in the US. When I moved to Dallas in 1985 my parents told me an old high school friend was living there too so I went to visit him. It was quite something. After high school (1967) he became a medical doctor and specilaized in endocrinology and I became an engineer. When I went to see him I almost fell over. He had a mansion and a "stable" of Jaguars. His swimming pool was bigger than my little patio home. He also had a live in couple for his 5 kids and a beautiful wife. He had invited two heart surgeons over for dinner who also had moved down from Canada to join me for dinner. After dinner we sat around the table talking. The three doctors praised the US medical system and said that "proper medical care should be a priviledge to those who could afford it and not a right". They then said that if I went into Macy's and saw something I could not afford do I have a right to demand it? The evening quickly degenerated into a loud argument and I left in a huff telling them all what I thought of their selling out their responsibility to humanity. I never saw my friend again which I regretted as he was a nice guy but I just couldn't stomach the wealth he had built upon human suffering for the masses. He must be a billionaire by now so I hope he does some free services part time for those who cannot afford Jaguars. Neil
alan86734 Howard31850
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Hi, Neil,
I'm sorry that you had to go through that painful experience, but also happy that you had the guts not to buy into it! My background is also engineering, and I believe JimJames is "one of us" as well. Is it perhaps because we are a pragmatic bunch by nature who insist on accuracy and truth, each and every time?
I will be posting more to your PAE DISAPPOINTMENT JOURNAL just as soon as I can find the time.
Hope you get well soon. Warm regards. Alan.
Howard31850 alan86734
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Hi Alan - thanks for your good wishes and comments. Your post 2 days ago about your urodynamics test is an important one. I had the exact same problem when I went for mine and the uro wanted to schedule me immediately for a prostatectomy. He recorded that my pvr was 850ml. But I told them I just needed to walk around for a whilw after holding litres of fluid for hours. I then went outside and ran around the building a few times and then pee'd out about 600ml. The uro didn't care about that at all. But it shows the problem with holding your pee when you have to go. I've had this problem other times too when stuck in traffic or at a show or even during the night and not wanting to get up and pee. Holding it in always results in retention for me. Now I just self-cath if possible. I think it must have to do with the a disconnect between the inner sphincter muscle and the detrusor muscles when the pain of holding it in becomes severe due to circustances but I don't know.
Thanks again for your kind thoughts. Neil