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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

83 Replies

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  • ed70868
    ed70868 Howard31850

    Posted

    I had the PAE on Oct. 28,2016. It took five weeks before I could come completely off flomax. There was some pain and a dull ache in the area of the prostate for 7-10 days after the procedure. I passed very little blood during peeing. Did have a little blood the first two sexual actiivities. I have not taken any flomax for over 8 months. My flow is pretty varied. Sometimes great and then sometiimes slow. On rare occassions even at this late date I think it is not going to start, but once it starts it's pretty good. I do have to be careful since many times I finish and stand there a second or two and sometimes I start peeing again. Its not prefect by any means but I had to take 2 flowmax a day before PAE just to pee without the straining. The big improvement is night time ... went from 4 times a night to none or one 10 percent of the time. When I had the urgency before I had to stop on the side of the road and pee or else. Now I can hold it for up to two hours or longer. The entry for the procedure was thru the wrist. PSA dropped from 12 to 3.4. Size of prostate before was 140. I am 74 years old, never had to use a catheter before or after the procedure.

    I understood that I will have to have the procedure done again at some point, since the prostate will keep growing. The procedure was done at UNC medical center at Chapel Hill, North Carolina.

    My opinion is that individuals performing this procedure will have to get more aggressive with large prostates to increase the success rate. This will increase the time to recovery. Just a wild ass guess stated as an opinion. good luck to all 

     

    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks Ed for that report. I hope you continue to improve. I agree with you that the IRs will have to get more aggressive with large prostates. But I know that Dr. Isaacson did not want to get too close to the transitional zone (where the hyperplasia is concentrated) because he didn't want to risk embolizing the urethra. I guess it is still a learning curve for them and us. Tomorrow I fly back to UNC for a 3T-MRI to see why my PAE is not working yet. I wonder if it will show what you mention here. I'll post what is found. Thanks. Neil

  • ed70868
    ed70868 Howard31850

    Posted

    Thanks Neil .. Will be very interested in your results tomorrow.

     

  • alan1951
    alan1951 Howard31850

    Posted

    "Mine may still kick in given enough time."  Take heart, Neil3149.  Easy for me to say, but things may end up boding very well for you after all, and I sincerely hope they do.

    • Howard31850
      Howard31850 alan1951

      Posted

      Thanks alan for the good thoughts.

      I had to cancel my MRI for today as I am too sick to travel so I changed it for 2 weeks from today.

      Thanks everyone.

      Neil

  • mike588
    mike588 Howard31850

    Posted

    I had a PAE in Australia about 7 months ago, it helped a bit but not enough to go off meds. I am going to have a follow up MRI and decide together with the surgeons (Dr Schlaphoff and Dr Catt) whether I should have it redone. Apparently there is data out there that the second time works for about 60% of patients, not great odds, but since the first time did not give any bad side effects I'm thinking it's worth a shot.

    I have the dreaded Median lobe, and it seems that there is conflicting info regarding this, some say it doesn't make any difference, some say if you have it PAE is ineffective.

    • Howard31850
      Howard31850 mike588

      Posted

      Thanks Mike for your report. I am in the same boat as you as well. Good luck and please keep us informed here about what the MRI shows and what you decide to do. Are you on any BPH drugs. Neil
    • Howard31850
      Howard31850 mike588

      Posted

      I forgot to ask you what meds you are on and for how long? Was the PAE done through the femoral artery? How big was your prostate? I've seen the same conflicting reports about median lobes and PAEs but I don't think there is a clear understanding yet about how PAE really works in the context of the prostate structure. What will your doctors do differently the second time? Take care. Neil

    • mike588
      mike588 Howard31850

      Posted

      Thanks Neil,

      I've had BPH for many years, I think about 3 years or so ago my Urologist put me on Cialis after I didn't like side effects of Flomax. Then that wore off, I tried Finasteride for a few months, didn't help. An Austrlian GP told me about Prozasin, that helps but lowers blood pressure too much so makes one tired. Now i am on Tamsulosin, I think that might be Flomax ? Don't like the sexual side effects but it's tolerable until I find a solution. If I feel the Tamsulosin is not enough I take 5mg Cialis every other day (not for sex but to help for BPH)

    • mike588
      mike588 Howard31850

      Posted

      I think it was done on one side via femoral (i was lying down and doc sat on right side)

      I think volume was 115 I don't remember. I don't know if it's any different yet, will find out after the weekend.

      The surgeon I spoke to said they had difficulty locating the right place but they definitely got to the target area, and I suppose on a second try they would just target a bit more. They want to err on the side of caution and not put too much in.

    • Howard31850
      Howard31850 mike588

      Posted

      Thanks Mike - please let us know what your MRI shows and what you decide to do. Good luck. Neil
    • richp21
      richp21 mike588

      Posted

      Yes, Tamsulosin is the same as Flomax.

      Did you have any other sided effects with the Tamsulosin besides the sexual ones?

    • mike588
      mike588 Howard31850

      Posted

      Neil

      THE MRI showed that the prostate did not shrink much - that actually is not bad news. bad news would be it shrunk and I still have BPH symptoms. The surgeon explained that the first attempt got about 50% of the material in needed.

      a. it was a bit difficult to get to the target area with my anatomy

      b. he was not being overly aggressive

      The good news as far as I'm concerned, and the reason I am doing the second time. Dr S explained that for the last 20 procedures he has improved the technique by inserting the catheter via the arm. Sounds scary but he assures me it is 100% safe. That way rather than the femoral the catheter goes straight "downstream" without having to change directions. Apparently I have at least 80% chance of success the second time. Since my prostate did not shrink much after the first time there is every chance the second more aggressive dose will do the job.

      For those in the USA if this is correct I recommend Dr Isaacson who does it that way and I've heard good things about him here, and if you had a PAE that didn't work maybe it was like my case where they didn't get enough material in the target zone.

      Let's hope I won't be adding to the "disappointment" journal next time!

      By the way Dr S explained that as far as he knows the dreaded Median Lobe is not an issue.

      Prayers appreciated for September 25th USA time September 26th in Australia for PAE part two!

      Makes me wonder that those surgeons who charge $8k - $13k in the should offer some kind of warranty that they will redo it for nothing if it didn't work the first time !

    • mike588
      mike588

      Posted

      Correction, I think he said via the wrist, not arm
    • andrewcalgary
      andrewcalgary mike588

      Posted

      if you don't like Tamsulosin(Flomax) switch to Alfuzosin, no retro, this is a drug from the same group of alpha blockers for BPH, that's what I did, after four years on  Tamsulosin(Flomax) and I recovered ejaculationion 

    • Howard31850
      Howard31850 mike588

      Posted

      Hi Mike - thanks for the report. Was it a 3T MRI? Could your doctor see the dead arteries (infarcts) on the scan and did he show you the ones he wants to target next time? I am just curious as next Monday I will return to Chapel Hill for a 3T MRI too to see why my BPH is still the pits ( I still self-cath part time). I did have Dr. Isaacson and he did go through the wrist as you say. The procedure was just like nothing even happened. It was very easy and I walked out after an hour recouperating and never had any discomfort, pain or bleeding. But also no benefit. So I wonder if your MRI showed scar tissue and evidence that your beads helped in any way. I do agree we should get a warranty or at least 50% off the second time. Good luck to you next week - we all look forward to your report.

      Neil

    • mike588
      mike588 Howard31850

      Posted

      Neil,

      I don't know what type of MRI it was - the doc id not mention many technical details, but he did show me some slides from I think my original CT scan (or maybe from the MRi tha was running during my actual operation) and how small some of the arteries were, and explained how minute the spheres are compared to the size of even the small arteries. The doc DID mention that he saw evidence that beads had done something in a couple of places. You should ask Dr I what percentage of beads he got in there. Apparently I had 50% (whatever that means) and it was not enough.

      To spend this kind of money, actually helping these surgeons builld up their database and learn on the job, really they should do the second procedure for free and pay from their own pockets if they did not do it right the first time. If you paid a mechanic thousands of $$ for a new engine would you be happy paying again if you were told "we didn't actually put in the right engine sorry but we can do it again but we have to charge you again"

    • Howard31850
      Howard31850 mike588

      Posted

      Thanks Mike. I agree with you about the doctors sharing the cost especially when it has to be done again. But maybe that would make them more aggressive the first time and embolize the urethra or rectum by mistake! I guess no one forces us to try PAE but I sure wish it worked better and lived up to all the hype. Anyway, good luck on Monday but don't worry about the wrist entry - you will really be amazed how totally painless it is and how quickly you can leave the hospital. Take care. Neil

    • mike588
      mike588 Howard31850

      Posted

      Hi Neil,

      Thanks for the re-assurance - I WAS a bit worried about wrist entry, just sounds a bit freaky.

      Yeh I thought about them being too aggressive if they knew redoing it was part of the package - I know if I were a doctor the money side would not be foremost on my mind, getting PAE to be the best it can be, helping countless men who are suffering and depressed having to take horrible medications would be more important to me.

      I predict in the next couple of years this is going to explode as the technique is refined more, it will be MORE than PAE is made out to be. There will always be a percentage it doesn't help I suppose, I think even now it has over 80% success rate?

    • alan86734
      alan86734 Howard31850

      Posted

      I endorse Neil's comment 100% My experience was a wrist entry radial cathing for a vascular mappig procedure. I really didn't feel a thing, and when they began to dismantle euipment I thought something had gone wrong and they hadn't been able to complete the catheterization.

      "No, we're done" was the answer I got!

      alan86734

    • nealpros
      nealpros mike588

      Posted

      The wrist entry is no problem. You end up with 4 holes about the same size as an IV. Not a problem.

      Neal

    • Howard31850
      Howard31850 nealpros

      Posted

      Hi Neal - I wanted to ask you about your MRI. I have mine this Monday at UNC and was wondering if yours showed any "suspicious areas" that might be misconstrued to look like cancerous tissues but in fact were just due to the PAE necrosis and scaring? I worry I make be making trouble for myself where I want to just see why my PAE has not worked yet and may end up with a call that they want to do a targeted biopsy on me because of suspicious areas. Thanks. Neil

    • nealpros
      nealpros Howard31850

      Posted

      I had the MRI done and read locally, and then sent it to UNC to get read again because I had little confidence in the local radiologist. Neither one gave me any indication of a "suspicious area "

      Neal

    • fj20848
      fj20848 mike588

      Posted

      Hi Mike

      Dr. Isaacson told me the whole prostate will shrink including the Median lobe.

      FJ

    • Howard31850
      Howard31850 fj20848

      Posted

      The problem in my mind is that all these IR docs are just talking about shrinking from their experience but there is no published study that shows actual physical evidence in form of picture scans that document the shrinkage of the prostate over time and link it to the PAE embolization. There are lots of published statistics claiming PV reduction but these were also seen in Phase 3 placebo patients when injections were made into the prostate in other studies. There is too much hand waving about the claimed mechanism and not enough actual data. The machines exist (MRI; CT; U/S ) to demonstrate their claims so why not publish. There are pictures of the actual PAE procedure showing the embolization and the spheres going in but I haven't seen any followup scans following the progress of actual patients as the prostate shrinks. When I write these docs for more data they just ignore my emails.

      Neil

    • mike588
      mike588 fj20848

      Posted

      Thanks FJ - I was told the idea is to "kill" the Median Lobe, or at least part of the prostate. That should make the whole thing shrink I suppose...

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