TO ALL THAT HAVE MADE PROSTATIC ARTERIAL EMBOLIZATION
Posted , 14 users are following.
Hy guys, I would like to know, from all of you here that had made a PAE how long of BPH have improved, regressed or worsened, and what were these symptoms.
Personally, I have at first a great improvement on urine flow but now flow has regressed a little bit (60 days after a PAE). Still have to pee 3 times at night (before was 5). As of now, I can´t walk too much because I got blood in urine after that.
0 likes, 29 replies
ross73654 lrp1
Posted
I had PAE in 2013 as part of a trial with Dr Bagla in VA, At the time my prostate measured 100CC on the MRI. I can only say it was a short lived success. I experienced some symptom relief for about 2 years and the the symptoms came back in force since culminateing in a few episodes of AUR.
I had a 3T MRI done a few weeks ago prior to my MRI guided Focal Laser Ablation and the interventional radiologist was able to walk me through the images and show me exactly why my PAE failed and where it had worked. I had a large protruding median lobe growing into the bladder neck, the MRI revealed that its blood supply was perfectly in tact and there lies the problem with PAE. It is untargeted and therefore pure luck whether or not it will affect the part of your prostate causing the most harm. The PAE hadn't successfully embolized my median lobe.
I had considered doing a 2nd PAE at one time but fortunately I chose FLA. My median lobe has been dealt with and I am peeing like it was double digit years ago.
don30615 ross73654
Posted
Ross,
Can you tell us more about the FLA procedure> It sounds similar to Green Light. Is it? Do they go in through the urethra and destroy tissue? And are there any side effects, such as RE?
Where did you have it done?
Thanks,
Don
ross73654 don30615
Posted
Hi Don, I'm a little tied up right now and will definitely get back to you on this.
In the meantime, there are a couple of active threads on FLA and I can throughly recommend you take a look.
https://patient.info/forums/discuss/going-with-focal-laser-ablation-for-bph-552241
Ross
don30615 ross73654
Posted
Thanks very much, Ross. I'll take a look at the threads you sent. Look forward to hearing more from you later about FLA when you have time. --Don
jjjj57989 lrp1
Posted
Here's the mistake I made when I selected to have a PAE. My dealings with professionals usually goes something like this: I call my dentist and say "the filling you just put in is hurting me" Or I call my auto mechanic and say "Even after you repaired my car I'm still getting the banging noise".
The say "Sorry to hear that, Come in and let me take a look." They welcome me back and begin to examine the problems. They look at things, poke around, push and pull in places, xray the tooth or put a scope on the car. And finally say, It needs a little more work, I'll just charge you for the parts.
In the case of my PAE, the reaction when the initial great results started to decline, was 'I don't know'. or 'Could be'. Period.
I didn't think it was necessary to ask the doctor if he has any concern to help a patient get better even if it takes 2 tries or if he'd be curious about why the failure happened.
mike588 jjjj57989
Posted
I think the dirty secret about PAE is docs can't be sure they embolized the parts of the prostate that is blocking, and can't be sure if blood supply is not re-routed. They are happy to keep trying to improve their technique while charging a lot of money for it. Somehow PAE seems to work well for a lot of people, but even if it's 80-90% success rate that is not enough. I don't think they are curious because they know if it didn't work they can look at your images they already have and next patient they can hopefully do better knowing yours didn't work.
ed70868 mike588
Posted
jjjj57989 mike588
Posted
Almost no chance of know how to do better for the next patient.
mike588 jjjj57989
Posted
I am guessing that they have your images from before and a "plan of attack" Then they have images of the actual procedure so they know where they injected the material - sure if they had images 6 months later it would be better and I know that's what they asked me to do in Australia, but I still think they might have an idea from where they injected the material and if it didn't work - maybe a PAE surgeon will comment some time so we will know.
don30615 ed70868
Posted
When I brought up the issue of the large medium lobe with Dr. Bagla, he said, "I don't know how this rumor started, but a large medium lobe makes no difference."
He also claimed a 90% success rate with PAE 5 years post-op. Not sure if those were his figures or Dr. Pisco's (in Portugal).
Perhaps the size of the prostate makes a difference. Mine was not very large.
mike588 don30615
Posted
I was also told the median lobe makes no difference for PAE. Probably the rumor started on patient.info hearing about so many with median lobe having issues.
tgt111 lrp1
Posted
lrp1 tgt111
Posted
My doctor told me that he never heard abot that "median lobe problem" from other IRs. I contacted Dr. Pisco and he answered me the same. Big prostates are the most benefited from PAE. As I wrote before I think that PAE is a new technique and IRs don´t know exactly why it works for some people and don´t work for others. I read that some patients have no bad outcomes after the procedure and other suffer a lot. My goal is to know, for how long the good symptoms last for some people.window.post_1498073537949_8 = function(win,msg){
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Drivewest lrp1
Edited
10 months out from PAE. Surgery seemed to go well, and the right and left arteries were relatively easily blocked. I was on the table for about five hours, and awake though sedated throughout the painless procedure. Went home, had some cramping pain that night, but nothing intolerable, and urinated much better within a day. Some blood was in my urine but that cleared up quickly.
A day later I started getting a fever that went up to 104, and I ended up in the hospital for a few days. Cause unknown but ascribed to "Post PAE Syndrome". While under care in the hospital I sustained Acute Kidney Injury (AKI) apparently due to being prescribed a combination of high dose Ibuprofen and Bactrin after the surgery.
After about a month, the flow improvement regressed to nearly the same as prior to the operation, and no improvement since. I have not been able to get off 4mg Doxizosine daily, though I tried. If I stop, I can't pee. One big plus is I am only getting up once or twice a night to pee, down from 5-7 times prior to surgery. I assume this means that the prostate shrunk somewhat, and the get the benefit when I lie down to sleep, but not when I stand.
Shed tissue from I presume is my prostate for about three months (small black clumps of tissue) and then that cleared.
I am at month ten, and suddenly am having lots of brown blood in my semen. This is very disturbing but the Surgeon says it is a known after-effect seen in 5-10% of patients, and should resolve in 4-6 weeks. If not resolved after that he will look into it.
For what it's worth, I had an enlarged median lobe going into this.
PAE cost close to $100,000 US. That is what the hospital billed BCBS, and what BCBS paid. I paid a small portion of that and then exceeded my yearly max outlay. That was the operation only, not the hospital stay. I can confirm this as I have the transaction records between hospital and insurer.
Ten months out I am back to where I started in terms of flow.
I am appalled at what this hospital charged insurance, and what insurance paid. The hospital took zero responsibility for inducing the AKI and I now have permanent kidney damage.
I don't blame the surgeon for any of this, he was skilled, kind, informative and supportive throughout. I just think I am just in the small of percentage of "interesting cases" for who this procedure did not go well. I would strongly suggest understanding the financials of this (in the USA) prior to doing the procedure, and making sure you have rock solid insurance.