I'm scheduled for a PAE. What is the procedure and post op recovery like?
Posted , 9 users are following.
I've decided to go for the PAE for my BPH. I guess I can consider myself fortunate that my symptoms are not as severe as others on this forum. My biggest issue is that I now wake up at least 2x a night to pee and the interruption in sleep is definitely affecting me. My AUA score was 13 which puts me in the moderate BPH category.
I am scheduled with Dr Bagla in April. What can I expect for the procedure and the postop recovery? He is saying I can actually work the next day although I will need to make more frequent trips to the bathroom the first few days after surgery.
Any insight would be much appreciated. Thanks!
0 likes, 27 replies
MikeSkier ananoman
Posted
Hi Charlton
My name is Mike, and there are quite a few PAE patients in different forums for prostates on this website. So Charlton, are you new to this website? How did you find out about it, being that it is a British website. If you are new to the website, go to the top under search and type in PAE. It will find all of the forums that PAE is mentioned in. As you will find out, most men that are looking for these alternative Prostate procedures, will be mentioning different ones in every forum. There are specific forums that people have started that are primarily PAE forums.
Where are you from? I am from SE Michigan and my procedure will be done in Houston.
So someone maybe talking about PAY on several of the FLA forums and the search will find it. I know one guy (mike588) has PAE done. He had his in Australia. He could probably give you a lot more men that have had or getting ready to have PAE.
I am going for an FLA for BPH procedure on the 6th of April in Houston with Dr Karamanian who is also an Interventional Radiologist like Dr Bagla. I have a very large prostate (176 ml, cc or grams) and median lobe and I would probably not be a good candidate for this procedure now that I know more about my condition. I just had a 3T-MRI done at the University of Michigan. This is the most powerful MRI imaging scanner available. I wanted to find out if I had prostate cancer and how big and in what shape my prostate was in. When I found out the size and then went back to see the results on large prostates with PAE, there were none my size. The largest I saw was maybe 80 to 110 ml. I did strongly look into PAE and that was my 1st choice for several years. I have been following that procedure clear back when it was delvelped in Portugal, then it went to Sao Paulo Brazil. Later to England and Australia. Dr Bagla is the most experienced IR for this procedure in the US. He use to be at Inova in Virginia and as you know since left and has his own practice. I did not find this out until about 4 years ago, I have another condition called PAD, Peripherial Artery Disease in my lower legs. I have vertually no blood flow in the 3 major arteries that go from your knees down the rest of the leg in both legs. Well because I am very athletic most of my life, somehow my system made hundreds of small arteries called collateral arteries to handle the function that my main arteries were not doing. Normally men, once they hit 60 with my condition usually have at least part of a leg amputated or both legs. It is my bodies ability to keep growing these collateral arteries that keeps me going and I am still very physically active. Because PAE is the blocking of the small arteries that feed the prostate, I figured in my case, my body might route new arteries around the blocked ones and my prostate would keep growing. Also, the procedure is not yet approved by the FDA, AMA and Insurance industry, it is very expensive to have it done.
By the way, is your insurance covering any or all of your PAE procedure? How much is your procedure costing you? I have called Bagla's office and they did not think right now I would be a good candidate for PAE. So now I am having another experimental procedure done and my insurance does not cover it. I am in a Clinical Trail so it is not costing me the full amount of $20,000 and my insurance is paying parts of the procedure even though it is not approved yet.
So Charlton, if you have any questions I can help you with, just ask.
Off to bed.
Mike
ananoman MikeSkier
Posted
I found this site about a month and a half ago. I'm fortunate that my bph is not as bad as some others. My biggest issue is frequent urination at night. I went to the urologist and they tried some meds which hasn't really been great. I did some research on the internet and found out about all these options.
It turns out Dr Bagla is only 45 minutes away from me so it made sense to look at the PAE option first.
My insurance is going to cover this procedure but I still have to meet the balance of my deductible
MikeSkier ananoman
Posted
Charlton
As I said yesterday, that PAE was my first choice and through over 5 years of research and through the Clinical Trials to get a medical point of view about these trials. the website (https://clinicaltrials.gov/ct2/results?term=Prostate+Artery+embolization&Search=Search ), Dr Bagla has done more to promote this procedure in the US than any other IR. Somehow he is getting his procedures covered by insurance without an approved procedure. As you know, being in the medical field, that it does not matter what you are having done, the deductibles have to be met first before the insurance kicks in.
When I first started talking to Dr B, it was going to cost me about $8k to $11k for the procedure and I would have to come in to be evaluated for the procedure before they would say I could qualify. At that time I was using my urologist ultrasound results from about 3 years ago when my prostate was about 65 ml. They were interested enough to ask me to come down to be evaluated. Eventually now my true prostate size, that was calibrated on a 3T-MRI machine, is truely a 176 ml prostate, which is HUGE and they would not perform the procedure on that size. They would go up to about 110 ml at the time. So my best alternative and it maybe the best procedure, is a Clinical Trial for FLA for BPH on April 6th in Houston with Dr K. From my communications with him and the reports from other patients, he is just like Dr B. Very personable and the best at what they do. I guess the women like Dr B for his looks, Ha! We don't need to promote that in this forum. Most of these guys would like to get their uninary track system fixed so then they can think about sex. That is what is great about both of these procedures, they do not destroy your ability to have a normal sexual relationship after the procedure, unlike many to most of the alternatives.
When did you say you were scheduled? Good Luck and you can see how helpful this support group is. A great bunch of guys are looking out for each other.
Good Luck, Mike
ed70868 ananoman
Posted
They keep you around after the procedure till you uninate, You may be given some antibotics and pain pills to take also.
Since the entry point for mine was the wrist I did not have to be concerned about a rupture which may occur with the leg. Need to be careful if entry is through the leg for a few days to be sure it does not open up. Keep those compression bandages on till it is safe to take them off. Also no running or major pressure on that leg.
Had some minor pain with peeing for the first few days and had to stay on flomax for a few more weeks until the swelling when down. After 5 weeks I was fine and I am peeing as well as I did when taking two flomax a day, but now I have none of the side effects..
Since the prostate will continue to grow I will probably need the procedure done again sometimes in the future. Very glad I had it done. I have been following this procedure also since it started in portugal.
Good luck to you
mike588 ananoman
Posted
The procedure itself is painless and you are sedated - after you have it they will probably give you some steroids to help you pee. Otherwise it stings a lot and very difficult to urinate. The pain starts about a day after the procedure presumably that is when the prostate swells up a bit. Steroids definitely help, I didn't have them the first time I did PAE and it was horrible.
I was told by surgeons in Australia that the procedure works immediately for some, you know withing a couple of weeks, and with others it takes weeks or even months. Unfortunately it did not work for me even after they redid it 6 months later. What did Dr Bagla say is his success rate?
If I were you before you do it at least look into FLA - search the groups and call Dr Karamanian in Texas. It might cost a bit more, on the other hand the effects might last longer. PAE is not as scientific, because they can't be 100% sure they are embolizing the right spot or that blood will not re-route somehow to supply prostate - I am proof of that. Maybe Dr Bagla is better at it than the Australians.
Since you are still not desperate it might be worth looking into it, and I doubt PAE will prevent you getting up at least once a night even if it works, and some people are saying it has to be redone after some years but I'm not sure if that is true. It depends on how good a shape your bladder is as to how often you get up at night, most older people wake up to pee in the middle of the night don't they?
good luck !
Michael
richp21 mike588
Posted
When I spoke with Dr Bagla some months ago, he said his success rate (symptom wise) was 90 to 94%. When I questioned him as to how it is higher than other reported rates, he said his is very particular about who he will do the procedure on.
mike588 richp21
Posted
Rich,
I wasn't suggesting the success rate was low - but think about it, would you want to spend 8 - 13 k on something where there is a 1 in 10 chance it won't work?
And how does he define success? I saw someone wrote he is peeing about as well as he was using Flomax after PAE. Nothing to write home about but Dr Bagla no doubt puts that in the plus column, and rightfully so but it's not a dramatic improvement. And how long will it last?
richp21 mike588
Posted
Hi Mike,
I wasn't thinking you thought Dr B.'s success rate was low, just responding to your question about what he said it was. As regards 1 in 10, not sure there is any other treatment that has a higher success rate, except perhaps ones with serious side effects possibilities. Also, at this point for me, and I would asssume anyone else considering a treatment, there is a distinct risk of damage to the kidneys or bladder if nothing is done.
Again, length of how long any procedure will last, short of the more drastic ones that have serious side effect possibilities, is probably an issue for other treatments as well as the prostate has a habit of continuing to grow.
Really. Not advocating any choice here. I was just responding to your question.
Rich
mike588 richp21
Posted
OK thanks for answering my question, I was just commenting I didn't know whether you were advocating or not - true until there are more FLA BPH cases we can't know for sure, 90% chance of success with no side effects is not bad either if it's good success and it's really the only other choice. I met someone in Australia, Peter, his PAE was a total success. Same surgeons I had, just shows everyone is different.
richp21 mike588
Posted
Yeah, I'm not advocating for anything. As you said, everyone is different, and everyone needs to be comfortable with the choice(s) they make. I view the forum as just wonderful support and great information to help us all make a choice that we are comfortable with.
MichaelVM7 mike588
Posted
Studies evaluating success for more established treatments - TURP, TUIP, HoLEP, open surgery - look at IPSS and QoL. Relief of symptoms marks success. Quantitatively, progress/success can be deduced from US or MRI to measure prostate size. Intuitively, one would think a shrinking gland correlates to lower IPSS/QoL. Dr. Bagels coauthored a study of men in three groups depending on prostate volume. The study, as I recall, included men with PV > 110 cc.
MichaelVM7
Posted
iPhone autocorrect. Ugh.
jed111 mike588
Posted
Hi Mike Just wondering about the size of your prostate..? I have read your posts in other topic forums too, and haven't seen the size of your prostate before the FLA procedure that you had...
Cheers
mike588 jed111
Posted
Hi Jed,
I'm not sure, except I was told it was very big or "huge", probably 115 or 125 if I remember the PAE surgeon said - the shape was unusual - like a football with one end pushing into bladder, and median lobe.
Now over 8 weeks after FLA, flow is better even good sometimes but I am still relying on Flomax and still need to self cath - you have to understand I left it too long so bladder is affected. The PAEs did nothing for me basically except I wasted time and went through a lot of disappointment and pain after procedure. FLA is no guarantee apparently unless things change in the next few weeks, but it's definitely better than PAE in my case.
jed111 mike588
Posted
Hi Mike... so sorry to hear of your pain and suffering. I think we men were designed with a definite flaw, a doughnut gland that can grow and squeeze areas that shouldn't be squeezed. I have just entered the BPH Twilight Zone myself in the past few months, and have had some pretty rough times... I have had 3 ultrasounds in the past 7 years, and recently, because of symptoms worsening, had a Cystoscopy and 3T MRI. My prostate is only 45grms right now, and firm, and my bladder has thickened walls that can still push urine thru the prostate, but I have experienced near full retention a couple of times in the last few months... which of course is why I'm browsing around this forum and reading about my fellow sufferers. Always difficult to urinate, but I can 'kegel' out most of it, even if it takes a lot of time. Coffee and salt exacerbate the problem too. They're good things for me to avoid now. The day usually starts off sort of ok, and by the end of the day it's extremely difficult. And difficult to stay asleep at night. Last night up 6-7 times.
I'm going to order some of the speedicath samples and learn how to use them in case of emergency.
I have been speaking with Dr. Karamanian, like many here, and he has educated me greatly and is such a wonderful human being. I live in Aussie-Land and plan on flying in tothe USA for a Houston "holiday" in the near future with my lovely wife, maybe even have a tour of NASA [N.ever A. S.traight A.nswer] while we are there, if I am able....
Thanks so much for your reply.
Jed
MikeSkier jed111
Posted
Jed
Mike Skier here. I just had a FLA / BPH by Dr K on April 6th. Everything is going great with me and I had an exceptionally large prostate of 176 cc or ml. I was in the machine for over 3 hours. I had high blood pressure and low oxygen levels going in, because of those conditions I stayed almost fully conscious for the whole procedure. The next morning both my wife and i went to his office to discuss the procedure. He had 2 monitors on his desk to compare the MRI data from before the procedure and the MRI data from the procedure. That's what is so nice about this procedure, is the real time HD imagery to accurately sculpt around the areas that need to be avoided, like the urethra, ejculatory nerves and ducks and the seminal ducts. I see that you talked to Mike 588, he has had both procedures, and is the only guy I know that has done that.
You say that you can level out most, have you had a per study to see how much you are retaining
You are right about Dr K, he really cares. I even got texts and phone call on Easter.
For PAE in the US, Dr Sanddep Bagla in Virginia has done the most and written most of the articles about it. Then I would say Dr Isacson at the University of North Carolina. I have researched for almost 5 years what procedure is best and was going with PAE myself until I met John on this forum, that introduced me to Dr K. Now I am glad I did the FLA for Bph.
This is the best prostate forum on the web, so search around and there are many people that can help with just about anything you need to know.
Mike
mike588 jed111
Posted
mike588 jed111
Posted
By the way if I were you I'd start doing self cath immediately, so get a trained nurse to show you how - it's a bit scary but the relief you'll get, not to mention sleeping better and better sex since you can do it before and not worry for a couple of hours that you need to pee while you're on the job as it were. It will be worth the scary aspect and just a bit of pain - protect your bladder until you decide which surgery - I wish I had done it before I had surgery.
jed111 MikeSkier
Posted
Thanks Mike... From what I understand I am not elegible for the PAE as my prostate is too small... [it's firm too, or 'hard' as some call it]. Plus i have read about some guys having an allergic reaction to the pellets and have gone into a chronic systemic allergice reacton.
Dr. K is a great guy, he has educated me immensley. It was he that advised me to learn how to self-cath in case of emergency...
I don't have much retention actually, just a lot of difficulty getting the urine out sometimes, have to do kegal after kegel to push past the blockage area, which is why I have a thickened bladder wall. The largest full bladder I have measured on myself is 350 ml, but I usualy void at around 220 ml.
Cheers
jed111 mike588
Posted
Cheers
mike588 jed111
Posted
you're welcome, I saw your other comment to MikeSkier - Kegel is supposed to help for people who are incontinent, not for helping to push it out. Are you sure it;s Kegel you are doing? If the largest full bladder is 350ml maybe you have a bladder problem it should hold more than that normally.
richp21 jed111
Posted
Hi Jed,
I've been following the PAE discussions here for a long time, and I've only seen posts from one man who had an allergic recation to the beads. Were there others that you know of?
Rich