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PAE DISAPPOINTMENT JOURNAL

Posted , 16 users are following.

Howard31850
Howard31850

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

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  • jjjj57989
    jjjj57989 Howard31850

    Posted

    In reading this journal of PAE failures I didn't see anyone who subsequently tried another procedure that worked.  

    If this is true is kinda scary.

    Today I even started another thread called "Has anybody recovered from a failed PAE"  just to get more exposure to my question.

    I am 11 days post-PAE and, while my stream is much better, I'm still taking cialis and getting up at least 5 times a night.  I know its early but I'm starting to get nervous and looking at what might be my best options if I don't see further improvement.

    I was hoping to see some posts about sucessful second PAE's or other treatments but so far, nothing.

     

    • Howard31850
      Howard31850 jjjj57989

      Posted

      I found that during the first week my flow stream improved because of the anti-unflammatory drugs I was on for the weak ( mainly prednisone). But after that things returned to abnormal.

      Did the IR who did your PAE claim it to be a technical success in that both lobes were embolized ok? Did he go through your wrist or femoral artery? May I ask where it was done?

      I hope you improve soon. Neil

    • mike588
      mike588 jjjj57989

      Posted

      Hi jjjj,

      I'm in the same boat, about 12 days post my SECOND PAE. The stream is a bit better. I am still on Tamsulosin, the doc told me to continue for one month.

      Since I am suffering jet lag it's hard to comment but seems like I still need to get up many times at night.

      I'm still hopeful, somewhere else people are saying Dr B (one of the leaders in the field) says most people seem to see results in the THIRD WEEK.

      My doc in Australia, Dr C told me that in his experience and research there seems to be two types of patients, those who experience immediate results, and those who see results afer "weeks or months"

      The other physician in Australia, Dr S told me he did a second procedure on someone and it worked.

      So stay positive jjjj and hopefully it will still work for you.

      Michael

    • jjjj57989
      jjjj57989 mike588

      Posted

      Hi Mike.

      I wish you the best of luck with this second PAE.

      A few weeks ago, before my PAE, I went through this forum and counted the good and bad reports about PAE outcomes.  The great majority, about 80%, were positive reports.    And the references to PAE doctors were bordering on adoration.

      Within the last week or so this has reversed.  We're now tabulating failures, looking for patterns and expressing disdain for the confusing and contradictory information the doctors are giving us.

      I don't know how to explain this sudden change.  

      But as you correctly point out we need to stay patient and positive.  

      Anyway, last night I did get a good nights sleep for the first time in a long time. 

    • Howard31850
      Howard31850 jjjj57989

      Posted

      Hi jjjj and Mike - first I just want to wish you both the best of success with your PAEs from the bottom of my heart - I really mean it.

      I started this thread on disappointing PAEs because it was very difficult for people like myself that have not had good results to date to comment on other threads that as you say bordered on adulation for their doctors. I have never liked being a spoil sport so I wondered how many other guys were out there disappointed with their PAEs but no place to vent their frustration. So I think that is why you are seeing more critical posts in the past few weeks.

      In my case , Dr. Isaacson said my procedure went perfectly because of my large arteries feeding the prostate and the presence of a trunk line which made it easy to embolize both side lobes completely with the beads. So it was a resounding technical success ( I do not have a median lobe or any other issues except for a very large (300gm) prostate.

      But in the 9 weeks now since my procedure my IR doc has shown no interest in why my PAE did not take at all. Remember that these guys still do not understand how and when PAE works. They speculate about the mechanism but really seem to me anyway to just want to claim technical successes i.e. that their part of the procedure in the operating room was successful. I had to take the intitiative and request an order for an MRI to visualize what if anything has transpired in my prostate. So maybe that will show something.

      I really really question the 80% claimed success rate. Is that just based on IPSS scores or is it just the technical success at embolizing both sides fully? In my case, the doc would claim a technical success while I still have to self-cath at 4am.

      I think it is all very muddy to me. Until a proper double blind control group study is done, which would be easy with PAE, we really will not know about the true benefit of this procedure and even more importantly its mechanism of action.

      I emphasize that all this is just my own opinion based on my own personal experience. I had very high expectations going into the procedure. It is important on this forum for everyone to report his own experience so others considering PAE can decide for themselves what to do. But we must have the whole spectrum of reports. I chose PAE because of the glowing reports, especially for Dr. Isaacson but in the end my experience was not the same as others. That is all I am saying here.

      I do wish you all the best of success. Neil

    • mike588
      mike588 Howard31850

      Posted

      Neil,

      Interesting points, I hope the 80% figure is real and not fudged.

      I think the docs DO know the goal of PAE and why it works - embolization worked for many years for women and the goal of cutting of the blood supply is to basically kill the intermediate lobe - the lobe that causes BPH - but at the same time leaving the structure of the prostate intact.

      Since your prostate was really huge it's possible that the results will still be seen, also Dr S told me he saw evidence that PAE was still working reducing the size of the prostate 6 months later!

      I have a friend who is a senior nurse, she told me generally speaking surgeons are in it for the money and won't give you the time of day after they "do you". The docs I dealt with in Australia are not like that, I bet Dr I is in between and will get back to you. I bet it's not easy for them to stay in contact after the PAE, it's such an emotional issue and I'm sure they don't have time to speak to al their patients and I'm sure Dr I will get back to you. At the end of the day it either works or it doesn't so when the situation is clear they have something to talk about.

      I would be interested if you find out what percentage of the beads got in there - for example I was told after first PAE he only got 50% due to complications.

      Regards,

      Michael

    • Howard31850
      Howard31850 mike588

      Posted

      Hi Michael - thanks for your note and your good wishes and of course I wish you the same. I will have an MRI for my prostate on Oct. 27 in Detroit so hopefully this will give some answers about your comments. (It is funny that I do not consider myself open to placebo effects yet I have terrible claustrophobia which is 100% mental suggestion!).

      My wife had a uteran embolization many years ago. She was imobilized for 24 hours afterwards and went through terrible - she was on a morphine drip for 2 days. It did work perfectly and cured her problem. So I was expecting the same type of discomfort and good results from the PAE but never had a moment's discomfort. So time and images will tell.

      It is really nice that us guys live all over the world but share this common problem and help each other - certainly one of the plus sides of the Internet!.

      Take care.

      Neil

  • jjjj57989
    jjjj57989 Howard31850

    Posted

    Guys, I'm resigning from this thread (I might still check in to see how you all are doing).  But I've had 5 days of rapidly increasing improvement culiminating in a great nights sleep last night, #16 since my PAE.

    Later I had a mild feeling that I would like to pee again but I decided to resist and was able to return to sleep.  My wife (M.D.) says that I'm retraining my muscles and bladder.

    I'm ecstatic.  I have energy.  I don't live from nap to nap. 

    As near as I can tell, Dr. Bagla was exactly correct in everything he told me and it seems like his treatment was right on.

    I've told Dr. Bagla to send me a list of all the websites that rate him and I will post his praises.

    I wont be surprised if sooner or later my symptoms return.  But today is a really good day for me.

    I truly wish each of you the same.

    • Howard31850
      Howard31850 jjjj57989

      Posted

      That's great news -  I pray you will continue your improvement.

      I plan to compile  all my records and send them to Dr. Bagla to see if he can help me. Hopefully I will also post his praises too.

      All the best to you.

      Neil

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