Has anyone out there had a "Prostate Artery Embolization??
Posted , 210 users are following.
I had one on September 10th, 2014 and would love to compare notes with anyone else that has had one. Thank You. ChuckP PS Some people just call it a "PAE" for short.
8 likes, 2499 replies
icejohn ChuckP
Posted
Thanks for your reply, it's very informative.
Anyone been to Portugal for a PAE? if so I'd like to hear from you.
John
Camster icejohn
Posted
arlington icejohn
Posted
lenny2cancun arlington
Posted
arlington lenny2cancun
Posted
william79680 lenny2cancun
Posted
some me people have almost immediate success with PAE ( like me), some take a few months and some just don't respond. Much depends on what is really causing retention and glow issues. For me it apparently was primarily prostate size ( 128g, now down to 80g ). There can be many other factors such as bladder function or other urethra restrictions. If prostate size is the primary cause of symptoms then PAE will definitely improve. Unfortunately there seems to be no way to be sure except to try it.
lenny2cancun william79680
Posted
greg35632 william79680
Posted
william79680 greg35632
Posted
Dr Isaacson did my PAE at UNC. He is wonderful. You can contact him thru their web site. Just google PAE and UNC and you will find a link to email him. If you send him your phone number, he will actually call you back. You could qualify for the clinical trial if you are interested and the whole thing will be free. I am scheduled for my one year follow up on April 1st and all is still wonderful in Pee Land.
arlington greg35632
Posted
greg35632 william79680
Posted
greg35632 arlington
Posted
arlington greg35632
Posted
william79680 greg35632
Posted
you our are welcome. I encourage anyone with BPH symptoms to consider PAE. It has been life changing for me. I had to get a catheter in the emergency room several months before my PAE. I vowed never to have to go there again so I made sure my Urologist supplied me with and trained me on self catheters. While they were not pleasant, they were definitely not as bad as getting one in the emergency room. Mainly because you will use the self cath before the pressure builds up too bad.
since the PAE I have taken no medicines and have never had to self cath. I just don't think about peeing anymore.
Good Luck..
greg35632 william79680
Posted
william79680 greg35632
Posted
I am not aware of any long term studies at this point. I just know my one year has been great. Also not sure how many Dr Isaccson has performed, but I do believe he is very competent and a leader in his field. Also the staff at UNC were all great to work with.
greg35632 william79680
Posted
bob120 william79680
Posted
PAE results studies I have seen there have cited 20-25% reduction of the prostate in 6 months and two year longevity with additional shrinkage up to 33% to 40% total. I didn't see any studies tracking patients more than two years as of yet.
Bilateral procedures (both left and right arteries) seem to have slightly better results than one sided procedures. The patients with the largest sized prostates got the most relief and largest changes.
About 10% of patients are unsuccessful. Some prospective patients are not qualified for treatment due to "torturous" (I guess this means too twisted) arteries.
I was considering pae to keep my prostate from regrowing but the dutasteride (generic avodart) studies on that site also show similar results of 25% shrinkage that continues up to the 2 years reported. So for now I'm just taking the dutasteride. I think the dutasteride does basically the same thing as the PAE, it blocks the converion of testosterone to DHT which is believed to flood the prostate, causing bph and prostate enlargement. If the dutasteride proves not to work for me, or if beocmes problematic in terms of side effects, I will probably go back to considering the PAE. If it continues to work with no side effects I probably will take it for life. The only reason I got my turps was because after 3 months, flomax no longer worked.
greg35632 bob120
Posted
joe74831 greg35632
Posted
Good luck, and do not wait.
bob120 greg35632
Posted
arlington greg35632
Posted
greg35632 arlington
Posted
arlington greg35632
Posted
Camster greg35632
Posted
greg35632 arlington
Posted
william79680 greg35632
Posted
awesome!! I wish you the best of luck with your PAE. I go back to see Dr Isaacson in April for my one year follow up. I hope you have as good of results as I have had.
bob120 william79680
Posted
Bob
bob120 greg35632
Posted
greg35632 william79680
Posted
I wanted to let you all know that I got the catheter out today and peed “great” the doctor said. Operation declared a success! This would never have happened without this forum and your support, advice and research links! Thank you hugely for taking the time to do this and answer questions and post your experiences. I feel so fortunate to have done this instead of some other operation, like TURP. And to add a cherry on top, I got the results today, on my birthday the best present ever!
caringbah greg35632
Posted
I'm very pleased for you.
arlington greg35632
Posted
Happy Birthday!
arlington greg35632
Posted
Happy Birthday!
bill20925 greg35632
Posted
ramakant16481 greg35632
Posted
Glad for your results and wish you great improvement in the months to come.
I had the pre-op MRI etc done last week in sydney, and was told improvements can continue upto 8 months as per their records so far.
I am due for a PAE on the 29th March in Sydney, got given a date just today.
It's great to hear about your results,
Cheers
Rama
greg35632 ramakant16481
Posted
Good luck on the 29th, I will look forward to hearing how it goes! From the research I have reviewed, and judging by comments in this fantastic and informative forum, the outcomes are very, very encouraging. It really has helped me to stay positive during such a challenging time.
william79680 greg35632
Posted
here's you continued success. April 1st will be my one year anniversary of having my PAE by Dr Isaacson. I go back for my final follow up as part of the clinical trial on March 28th. I can still say that this was absolutely the best decision I have ever made. Life is great and I still just don't think about peeing at all anymore.
greg35632 william79680
Posted
ramakant16481 greg35632
Posted
THE PAE for me at Liverpool (Sydney) went just as expected yesterday, no issues, pain-free even the artery punch gave me no pain once the local anaesthetic wore off. Doc Schalphof and his team are aboslutely A-Grade professionals, he is a true doctor, hard to find these days.
I'll spend the next 5 days in Sydney, mostly resting and keeping an eye on things.
I can't say any improvments so far, but I didn't expect any from Day 1. All trips to loo were painful today as I skipped Tamsulosin one day, so popped one now, reasong being kidney protection, just avoiding a repeat of the kdineys dropping down to low filtration months ago when my prostate deteriorated rather rapidly causing stage 3 kidney levels.
I await symptom improvement, so will skip the pill every now and then to signs of improvement.
Cheers
Rama
Sam05687 ramakant16481
Posted
Congratulations , expect progress soon.
It took me 3days to be sure of being confident about being back to normal.
ramakant16481 Sam05687
Posted
Thanks for the encouragement.
Interestingly, no catheter was used, as they are refining the proccudre and reducing all steps to bare minimal to minimise discomfort.
I did feel slight pain and tension in the prostate area all day after the op yesterday, I sense changes are occurring. Part of my problem is not getting enough sleep 2 nights before and yesterday, so working on that.
greg35632 ramakant16481
Posted
ramakant16481 greg35632
Posted
Thanks for sharing your experience.
Great to know that you continued to imporve while taking doxazosin, which is als an alpha-blocker. I was wondering if taking one may interefere with shrinking of the prostate.
Are you gradually reducing the dosage with doxazosin ? Sorry about the dumb question, how do you make out that the improvement is from the intervention and not from cobtinued doxazosin.
I wish your improvement continues. As per Dr Catt at Liverpool, some patients have reported improving flow right upto month 8 after intervention.
ramakant16481
Posted
So far no signs of any improvments wrt symptoms.
So the embolisation blocks blood supply to the prostate, causing something like tissue death leading to reduction in size. How late can the response be ? I was given a brief explanation of the variation in start of imporvemnent for different individuals. Prostate having soft tissue around urethra will start shrinking and widening the urethra earlier than a gland with harder tissue in that region.
Anyone out there who started experiencing improvment post PAE after some weeks or months ?
bob120 ramakant16481
Posted
Glad your procedure went well. All the studies I have read on PAE show the maximum reduction of the prostate size occur in the period from one to three months after the procedure.
william79680 bob120
Posted
My prostate shrunk from 130g to 87g in the first 3 months, then to 74g at the end of six months. About 44%. I am waiting on results from one year MRI to see what it is now.
Larry
bob120 william79680
Posted
Thanks so much for the info. I'm looking forward to hearing of your one year MRI results when you get them. This is quite encouraging. In May I'll get a sonogram and I'll find out what 6 months of dutasteide has done, and I'll have the info to decide if I want to try the PAE and eliminate the dutasteride or continue on the dutasteride. If the dutasteride doesn't work the only options for me would be a PAE or removing the prostate. The PAE would seem to be a better first choice.
Bob
william79680 bob120
Posted
I took Avodart and flomax for a year and they really messed up my sex life. Fortunately most of that has corrected after PAE , but I would caution you not to take Dutasteride for very long. It can cause retro grade ejaculation and a loss of libido.
bob120 william79680
Posted
victor94298 william79680
Posted
When did u start seeing results?
And most important any side effects
With intercourse ... I am going to get it done it 3 weeks..
richp21 victor94298
Posted
Hi Victor,
Where will you bring having it done? I'm scheduled for late March with Dr Bagla in VA.
Rich
victor94298 richp21
Posted
Dr. Bagle use to work there.
Dr. Sterling will be performing the surgery
jimjames victor94298
Posted
Victor, Rich, All...
There isa recent and informative thread tracking results from different procedures here:
https://patient.info/forums/discuss/bph-treatment-results-564488?page=0#2561255
PAE got an A+, B, and 2 F's. Not a big sample, but if memory serves me about the same ratio as I've read in this thread.
With a 50-50 chance of what appears to be "great" versus "terrible" results (and I believe we've seen some retro orgasm here) my personal opinion going into this procedure, with these odds, is not to just look at the Doctor performing it (I assume most of the procedures here have been performed by the same small group of experienced doctors) but to try and figure out in advance which group you might fit into.
Recently, someone explained that the descrepency between the rates of success that the doctor's tell their patients, and those reported here, may have to do with both a short follow-up window which would then exclude people whose progress deteriorates after a few months, as well as confusion between "clinical" success and "symptomatic" success. A clinical success is where the operation went as planned but did not necessarily elminate the symptons. Of course the only meaningful figure we should be looking at is clinical success.
Don't want to seem negative on the procedure at all, but just want to point out that the success rates are the same as flipping a coin. My personal feeling on this is that it has to do less with the procedure or doctor and more with the varied individual architectures of the prostate and bladder. With the prostate, this could be a large median lobe. With the bladder, it could be a stretched, atonic bladder. Either of these condition suggest a less than optimal outcome.
So, if it were me, I would press whoever is performing the procedure, for more realistic *symptomatic* outcomes based on the condition of my individual bladder and prostate, as opposed to figures stated in the studies. If in doubt, urodynamic testing might also make sense as one other indicator of whether or not the bladder has enough tone and detrussor strengh to overcome even a diminished prostate from PAE, or any prostate reduction procedure for that matter.
Jim
nealpros jimjames
Posted
Jim,
Very insightful, as usual. As you know, I have had 2 PAES with limited success. I was never asked about previous testing, except 3T MRI. I now think that type of analysis is obviously required. Before, I just thought they knew what they were doing. Now, I'm not sure that some of the IRs have a good idea about these other factors.
Neal
jimjames nealpros
Posted
Neil,
If the IRs are going to start "curing" BPH/ LUTS, you would think they would take the time to study the dynamics of the system a little bit more. Then again, many urologists seem to do the same.
Jim
victor94298 jimjames
Posted
I think my Blatter is ok because I only have been suffering from BPH for 2 years not very long and l never had to do a any type of Catheterization. But still better to check for everything and be sure before I proceed. I appreciate the input Jim.
joe74831 nealpros
Posted
bob120 jimjames
Posted
All the procedures do well with retention, unless there are bladder problems. I think the nocturia issues are less successful. It seems all the doctors with procedures for LUTS/BPH take a one size fits all approach. What we see on these forums is that one size doesn't fit all. But I thin that is true with every type of chronic illness. Medecine is good for emergency and trauma care, but often doesn't do well with chronic illnesses, either figuring out the cause or treating them. They can treat the symptoms but often cannot provide a lasting cure.
jimjames bob120
Posted
Bob,
Unfortunately, bladder problems and retention often go hand in hand.
As to nocturia, there are two primary causes. One is urine retention and the other is fluid retention often associated with getting older and other things. The former can be helped by a successful surgery or procedure, the latter probably will not be. That's why we see so much nocuturia here regardless of the procedure and other results.
In total agreement with the "one size doesn't fit all'. In many case the doctors are either under trained, lazy, overworked, ill informed, greedy, or some combination.
I remember marveling at how the TV Dr. House would have his team spend hours and even days analyzing and diagnosing a patient. I find that the average urologist seems has an attention span of about 2 minutes, if that, before he interrupts what I'm telling him.
Jim
nealpros jimjames
Posted
Hi Jim and Joe,
I guess that's the point of all this discussion. More and much better research and diagnosis need to be done. I have training in research design, and most of these folks don't seem to have a clue. Sample sizes are too small, and there don't seem to be adequate controls in place, such as making sure what is causing each man's problem so that they can tease out the effects of the various treatments, if any, on that type of problem. Most of these folks are trained to be doctors, not researchers.
Neal
j12080 jimjames
Posted
Jim I agree with your analysis. It just makes logical sense that and proved out in my recent FLA procedure. the difference was they could map out how and what to remove tissue and then see that removal as they were preforming it with the MRI and computer. I am two months post op and everything is back like in my 40's. I know of several other fla's that have been done sense mine was done but I do not yet know the results. One man doing it had 2 PAE's before his recent FLA. His results from the PAE's were random. I am waiting to hear and praying for him.
jimjames j12080
Posted
Hi John,
Not sure if which "analysis" your're agreeing with, but I'll go with my post to "victor, rich, all" that contains the link to the "bph treament results" thread.
The point there was that regardless of the procedure -- be it TURP, PAE, or in your case FLA -- outcomes can sometimes be more dependent on the condition of the bladder than the individual procedure.
That said, if history, observation and testing (such as urodynamics) show that the bladder is elastic enough for a successful procedure, I do think FLA has the potential to be the gold standard in prostate reduction procedures for the reasons you gave.
It would be great if you could somehow find out/contact the other men who had FLA and either report back or have them report back their results.
Even if the results are not as dramatic as yours, the fault wouldn't necessarily be on the procedure, again it could be with the pre-existing conditon of the bladder.
Jim
j12080 jimjames
Posted
Yep that is the one, and I can explain I was the person who you heard from the clinical versus symptom success theroy. I got this idea from face to face conversations with both Bagla and Isaacson. The two leading PAE Doctors in the US. The question was ask why their numbers were so different. Bagla's explaination was that he is very selective in patient selection as to who he will preform the procedure on in an effort to improve his success numbers. Isaacson's quote on success was in the mid to high 70's. He said the difference was in the eyes of the beholder and that some success numbers were more broadly quoted as they were clinical success number and not symptomatic success numbers. i will as he did, let you derive from that what you will in definition. My question to both the PAE doctors was why do the success number between the two most experienced PAE doctors vary by some 15%.
By the way, I am now back as I found 138 Patient emails in my SPAM file and fixed the issue. Don't know how or why it happened but I am now back on line with Patient.info.
My FLA procedure has been Nothing short of remarkable. I am very pleased. My chioice added up to the fact that I wanted the pin point accurace of the laser with realtime vision of the ablation during the procedure. My two IR doctors I worked with in my FLA understand all the dynamics of the gland, all the componets, the bladder and the kidneys. This is why I ask them to show me on the MRI percisely how this procedure would be done using my MRI and where the laser would enter and what would be removed. This was confirmed both before and after the procedure. I also chose this FLA procedure over because this procedure does not enter my urethra and therefore causes no damage.
My Nocturia has gone from an average of eight times a night to now 1 or somtimes 2 depending on what I drink in the later times. My volume is 400 to 500 cc each urination, up from 150cc. My flow is back like it was when I was in my 40's. My sexual situation including my ejaculation improved drastically. My results were not immediate but they came within a month. It actually got better slowly every day and then in one day everything changed for the best results I could have imagined.
John
joe74831 nealpros
Posted
jimjames j12080
Posted
John: My question to both the PAE doctors was why do the success number between the two most experienced PAE doctors vary by some 15%.------------
I would venture it's that their screening criteria differs somewhat and/or they each grade "success" a little different. Also, given that some here report initial success and then a reversal, how and when they follow up post procedure may also be different. A lot of times people simply don't go back or even inform the doctor when a procedure fails, they just move on. I can't remember a doctor ever calling me and asking, "so, still good".
Jim
victor94298 j12080
Posted
procedure shrink the prostate as well or are they just oblating the obstructions?
Please give me a little more detail..
I like the fact of not having pellets in my prostate for the rest of my life and Percision is what I like especially when working around that area!! I am 52 and enjoy my wife I really want to keep that part of my life.. thanks for the input my friend.
nealpros joe74831
Posted
Hi Joe,
I agree with you. It's only human, but it's bad medicine.
Neal
stebrunner jimjames
Posted
Hi, Neal,
Sorry to hear that your 2nd PAE did not improve your situation much. I went for PAE last June, knowing my results wouldn't be the best as I had a large median lobe. Had mine done with Dr. Nutting in Denver, and he thought my large median lobe wouldn't be an issue. I knew better from reading on these forum threads. The best I hoped for was to stop my prostate's growth and to make self catheterization easier. It has done both.
Nutting has done a good job of following up, and I have sent monthly reports to Nutting and his nurse. Had a 2nd CT scan done about 5 months after my PAE, and it showed little change in my prostate size. Couldn't naturally void prior to PAE, but I can now void between 100 ml and 200 ml. I sent a copy of the scan to Nutting, and he called a month later to check on my progress since seeing my 2nd scan. He couldn't explain why I could naturally void now. I asked if I should consider a 2nd PAE, and he said no.
Interesting that this week I had bladder stones removed. My median lobe presses into the base of my bladder, making it difficult to get at the stones. The uro removing the stones thought she'd have to go through my abdomen to access them. She used a camera to look into my bladder and saw she could remove the stones via my urethra. She told me the PAE must have reduced a part of my median lobe, which gave her easier access to the stones. That may be another benefit I received from PAE.
I think the best treatment I've done for BPH so far has been CIC.
Stebrunner
bob120 stebrunner
Posted
Interesting. I also had a large median lobe protruding into the bladder. On the sonogram it looked like it took up about 15% of the bladder. I also had bladder stones removed. The urologist said they looked like a bunch of bb's. I wonder if the median lobe protruding into the bladder caused the stones to form and accumulate?
nealpros stebrunner
Posted
Thanks for the interesting information. You may be like me and have a few extra blood vessels that the IR missed. Who knows?