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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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  • joe74831
    joe74831 Howard31850

    Posted

    Hello Neil,thanks for starting the discussion and the great header for the posting..

    I am definitely in the disapointed group. I had mine done at UNC on Jan 26th of this year I am 53 and otherwis in exellent health..My p[rostate was only 45 cm in size, but I did have the median lobe.

    The procedure went well, but I immediatly had an allergic reaction  after the procedure, and broke out in hives from my neck down. After eliminating most causes the doc is fairly certain that I had a reaction to the beads used to block the arteries. And I now have permanet scars where the skin actually peeled off. Since the procedure I still have the allergic reaction going on, and my prostate spasms and causes pain frequently, especially after ejaculation, or forcing myself to try and empty my bladder.

    I am actually quite a lot WORSE after my procedure, and a follow up MRI shows the prostate has not shrank, and continues to show inflamation apparently from the allergic reaction that continues. I have taken high doeses of prednisone off and on since the procedure. The PAE doc tells me the only way to get rid of the beads, and stop the inflamation is to completly remove my prostate. While i am not to that point yet, after 9 months I am pretty frustrated and weary.

    It also dont help that UNC continues to bill me for $27,000, even tho I have paid them almost $1,000 and my insurance has paid them $22,000 for a procedure they charge $6500 cash for. It just adds to the stress.

    Thanks again for giving us a forum to at least vent, and compare notes.

    Joe

     

    • Howard31850
      Howard31850 joe74831

      Posted

      I am really sorry to hear about these awful problems from your PAE. Have you maybe tried to get another opinion about how to solve these issues from someone else like Dr. Bagla? Is Dr. Isaacson trying to work with you on these terrible issues? On the financial side that is awful too - the last thing you need to worry about. Will they not work with you at UNC on these problems too especially given the terrible failure of the procedure? Please keep us informed. Personally I would try to get a second opinion from someone reputable like Dr. Bagla if you can. I go back to UNC this coming Monday for a 3T-MRI to see why mine has not worked. All the best. Neil
    • Howard31850
      Howard31850 joe74831

      Posted

      Hi Joe,

      I was thinking that you should contact the company that makes the spheres that are used at UNC for the PAE and tell them about your situation. I always thought that the spheres were inert so they might have a suggestion for you and they need to be informed about your experience. I am not allowed to post the web site here so please google for Merit medical -they make the beads that are called embospheres. When you get to their web site look under peripheral intervention and then check for embosphere microspheres. There is a lot of info there which I believe talks about the spheres being inert. But in any case yo should write or call them. All the best. Neil

    • richp21
      richp21 Howard31850

      Posted

      Hi Neil,

          To your knowledge are these the same microspheres that have been used for years in embolization procedures for other parts of the body?

    • joe74831
      joe74831 Howard31850

      Posted

      Hello Neil, and thanks for the reply. Dr isaacson has been very good about listening to me and trying to help, but I think he is pretty much at a loss. In the last email he sent he gave me three options. Number one a turp which would help with urination, but would not help with the allergic reaction. A second PAE with a different emblization material, which might help with the urination, but not the allergic reaction. And lastly a prostatecomy which would help with both, but have all of the other problems associated with that. He says that the  microspheres do not just go into the arteries, which was my understanding, but into the prostate tissue itself, making the procedure non reversable. 

      I did ask if he had talked to the company and he said he had, but didnt offer any further information. He also said he had reported it to the FDA.

      It will be interesting to see what your MRI shows. Please let us know.

      thanks Joe

    • jjjj57989
      jjjj57989 joe74831

      Posted

      Joe, sorry if I missed something here but whey would a different embolization material not help?  Its possible that you would not be allergic to it and might get the benefits of PAE?
    • Howard31850
      Howard31850 joe74831

      Posted

      Hi Joe - I wonder how many other men have had this problem with PAE?

      Have you considered doing sefl-cathing (CIC) to keep peeing until these issues about what to do are better resolved? I can point you to places on this forum that can help. I started doing self-cathing a month before my PAE because of retention. It really is not so bad with the new technology available. If my PAE really failed I might just do CIC indefinitely until some new treatments come available like annual prostate injections for BPH. TURP is really not a good idea and a prostatectomy is even worse especially for someone your age. CIC-ing will give you back control of your peeing and save your bladder/kidneys. (CIC=Clean Intermittent Catheterization). I know what you are thinking - I had the same thoughts but was really surprised how easy it is. Take care. Neil

    • Howard31850
      Howard31850 joe74831

      Posted

      Hi again - I forgot to suggest to you that it might be an idea to see an immunologist to discuss your problem. Have you done that yet? You may have other options open to you. Also if your body has set up an autoimmune reaction to the beads (or something else maybe), then removing the prostate may not solve your allergic reaction even though the initial cause of your allergc reaction was in the prostate. An immunologist would be able to discuss this with you. Good luck. Neil
    • mike588
      mike588 joe74831

      Posted

      From what I've heard PAE should only be effective if you had a very large prostate to begin with.

      I wouldn't pay another penny sounds like a mixup which can be sorted out. So sorry I hope a solution is found - hopefully it will settle down on its own.

  • Howard31850
    Howard31850

    Posted

    Hello everyone

    Recently I have been reading about 2 new treatments for PAE that failed their phase 3 double blind placebo trials. The treatments consisted of once-a-year injections into the prostate and both procedures had shown great success in the phase 2 trials where the patients knew they were getting the drug.

    What is interesting about these studies is not that the injections were ineffective in phase 3 but rather that the PLACEBO patients were just as effective in reducing their IPSS scores. The score reductions were quite dramatic in the control placebo group even after a year. Also many in the control group also showed reductions in prostate size.

    I saw this effect also with the Gat/Goren procedure which, like PAE is also done by IR guys but in this case the veins that cause varicoceles are sealed, the theory being that this will stop flooding the prostate with very high levels of Free T which could cause BPH. I personally know a lot of these guys who did it and most claim almost immediate improvement in symptoms while maybe 20% see no improvement. While hundreds of procedures have been done there are no plans for a proper phase 2/3 study. Here again the improvements are mostly in the IPSS scores with minimal physical evidence like reduction in prostate volume. So I wonder if here again we are also seeing a placebo effect.

    So this brings me to PAE. PAE like these other treatments for BPH is indirect and basically just an injection (of beads). So is it possible that the improvements reported by patients is also just a placebo effect? As with these other indirect injection treatments for BPH, the improvement in PAE patients is mostly in the IPSS scores with minor physical reductions in prostate volume and other measures. Currently there are no planned Phase 3 trials for PAE that I know of.

    So this brings me to the question I wish to ask all of you. Placebo effects are most common among highly suggestible people. I for one am not suggestible - though not from Missouri I want to be shown evidence. The day after my PAE Dr Isaacson called me at the hotel and when I told him I had no pain at all he said that the pain would start within a day or two. I told my wife that I would not let that happen as we wanted to tour around a little. So guess what - I had no pain and  after 2 months my BPH is still terrible. So maybe if I had had some pain, even imagined pain that had been planted in my head, then I would have thought OK the PAE is working so my BPH would be much better with improved IPSS scores - in other words the placebo effect would have worked for me.

    I therefore wish to ask all of you how susceptible you are to suggestion. I wonder if there is a correlation between how susceptible we are to doctor's suggestions (or to each other prior to our PAE regarding expectations) and how good our outcomes were. So here is a simple question:

    On a scale of 1 to 5 how would you rate your trust of doctors? With 1 placing them at the level of used car salesman and 5 meaning you would put your life in their hands no questions asked.

    I often hear and really am getting tired of it, that 80% of PAE patients have good outcomes in terms of their IPSS scores. So are we the 20% that are independent-minded non-suggestible (non-gullible?) patients?

    Thanks for reading all this. What do you think of this idea? Take care.

    Neil

     

    • ed70868
      ed70868 Howard31850

      Posted

      not sure what to say to your statement.. Sorry it did not work for you. I do not care whether I am guuliblie or not or if my results is a placebo effect ....just as long as I can pee and not have to take anymore flomax. 

      I believe you are comparing apples and oranges in your statement above.

       I have more respect for an IR doctor over a uro doctor is the best answer I could give you on that issue. I would not attempt to rate them.. 

      I wish you the best as you look for a treatment for your enlarged prostate and getting your function back to somewhat normal state. 

       

    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks ed for your response. I did not mean to suggest that placebo effects are not just as real as physical responses to treatments. I consulted to a small biotech that developed an immunotherapy injection for an aggressive form of brain cancer. In phase 2 trials it was hugely successful. The three year phase 3 double-blind placebo study just completed this past July. Everyone was so opitmistic for FDA approval that manufacturing facilities had already been setup. Yet the results showed that the control placebo group showed the same physical reduction in tumor size and remission as the drug group!! Can you imagine the power of the mind!! Anyway the company collpased.

      I wish I had had a respone to my PAE- placebo or not. But I must say that I would not give you ten cents for my IR guy. He has shown no interest in my lack of response and my suffering. Other than a brief phone call the day after the procedure his responses to my emails have been dismissive and mean. So in this sense he is no different than the uros I have known. I will just stick with self-cathing - at least I have control of the situation and it is benign as long as I am careful about UTIs. I am glad for you and wish you well. Neil

    • mike588
      mike588 Howard31850

      Posted

      Neil,

      If it doesn't work it probably has something to do with the structure of the prostate or their inability to get the material into the arteries. I don't believe for one second that it is has something to do with suggestion.

      Having said that if the surgeon did not have success injecting sufficient material, and you forked out $10k maybe he won't be completeley honest. That's why I think there should be some kind of warranty that they will do a second procedure if the first one failed.

      There might be something to do positive thinking, there are things we don't know. But to say that 80% are successful because those patients are gullible is ridiculous. No offense.

    • nealpros
      nealpros mike588

      Posted

      I agree with you about the warrantee, but UNC doesn't.

      Neal

  • ed70868
    ed70868 Howard31850

    Posted

    I to wished it worked for you.  It appears at least one Uro, based on statements from our discussion group, that used the green laser procedure did it the right way and reduce the volume of the prostate by only doing one side which allow the person to pee without drugs or damage to nerves etc.. I do not remember which individual posted that informatiion. Sounds like something to research..If my PAE had not worked I thought that might be something I would look into. It appears you are going to need to do something sooner or later. Good luck   I guess the reason I reacted the way I did is I got my Doctoral degree in the sciences and your statement took me back a little LOL.. All good with me. Take care and I am hoping something works for you.
    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks Ed. What field did you get your PhD in - mine was in astrophysics though I couldn't get work in that field back then. I have been involved in the statistical reduction of data for several clinical studies which is where my fascination for the placebo effect came from. It almost seems magical to me because it goes far beyond just perception. I have been trying for some time to get the FDA to include certain psychological questionaires for participants in clinical studies to see if there is any correlation between profiles and outcomes. One pattern I have noticed which stands out is that the control group response is almost always much stronger where injections are used rather than oral placebos.

      As a scientist I do wish that my IR would take more interest in understanding why some PAEs succeed and others fail - everything else being equal. At present there is no consensus about the PAE mechanism so it would seem to me that followup scans to access the physiological responses would go a long way towards understanding and ultimate approval of this technique. All the best to you. Neil

    • ed70868
      ed70868 Howard31850

      Posted

      My areas were Biology and Chemistry. After the degree I went into management due to the money and never used the degree. LOL But it was fun and I loved the field work. Love the enivornment of graduate school and the type of individuals I worked with in the reserach Lab. I studied of all things bee flies and their life cycle ... Not a lot of demand for that area.

      Did teach some chemistry and biology in college part time for a few years.  

      If I or you had been in their clinical research trials you would have gotten a follow up MRI to determine the reduction of the prostate due to the procedure.

      If my memory serves me right their were about 9 percent who the PAE did not work for many reasons including medical, there were about 11 percent who were a clinical sucess, but the procedure did not improve their condition. The other 80 percent were all over the board. Some had a big reduction and still had to take flomax or another drug to pee, but did not have to be catheterize, others had a reduction but still needed catheterization ex. times a week. Others had complete relief. So I think the word clinical sucess is a very miss leading term. 

      I first read about PAE while in Europe and began following the information trail, hoping it would be sucessful and find its way to the US. I was surprise that Mayo did not get in on the clinical trials. Glad to not have to take anymore flomax. It was killing me and my eye sight. 

      Maybe something will help you in the near future. I surely hope so.

    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks Ed - I enjoyed your post very much. To your point about claimed clinical successes I could not agree more with you. I wish that the authors of the studies would breakdown their statistics in terms of specific BPH pathologies rather than lumping then all together.

      For example, Dr. Pisco recently published the best PAE study to date following over 600 men for 7 years. Prostate sizes in the study ranged from about 20gm to over 300gm. But the average was about 80gm and that was the value assigned to that attribute in the study. It would be much more informative to break out the results as a function of prostate volume alone for example. Then there might be some clarity on what is meant by a clinical success as a function of specific BPH attribute.

      I wrote Pisco as well as others with similar studies for their raw data and offered to reduce the data for them in terms of specific pathologies but never had a response from any of them. The claim is frequently made that PAE works better for large prostates but I believe that claim to be vacuous since it only refers to technical success. There is no evidemce that I can find to back up claims of clinical success. When I pushed Dr. Isaacson for some substantiation of his claim he finally had to admit that it was just his impression!!

      I have been on alpha blockers (alfuzosin) and dutasteride for over 10 years. About 6 years ago I suffered PVD (posterior vitreous detachment) in both eyes which introduced large floaters into my vision field. They have really reduced my quality of life in many respects - for eg I lost my flying medical and as well cannot look through a microscope directly . I guess I will face Holpe or an SP in the future if the self-cathing doesn't work. All the best. Neil

    • nealpros
      nealpros Howard31850

      Posted

      I agree with your scientific approach to this problem. I also agree that the IT's doing the research appear to lack training in research design. For example, little data are collected regarding the actual cause of each man's urinary symptoms. Are they caused by BPH, a urinary obstruction such as stones, a narrowing of the urethra, a lobe protruding into the bladder, or any one of a number of other possible causes? It may be that PAE or some other possible treatments work for one or another of these causes, but not all of them. If you don't know which of these things are causing the problems, how in the world can you ever get a correlation to know what works for what?

      Neal

    • Howard31850
      Howard31850 nealpros

      Posted

      Right on! The data is all there - I just wish someone would compile it. Dr. Isaacson told me he was planning to do just that but did not have the time. I offered to do it for him but never heard back.

      How are you doing? Isn't your second attempt coming up soon?

      Take care.

      Neil

    • Howard31850
      Howard31850 nealpros

      Posted

      Just wanted to add more to your point here that many men who submit to PAE do not even themselves know the cause(s) of their urinary retention problems. I ask many of them on this forum what the specific pathology and most cannot answer me - some are even doctors themselves!

      Also to your point, the AUA used to consider LUTS secondary to BPH but now they have changed that in a recent paper. Researchers have found that there is little correlation between LUTS and BPH and now view LUTS clinically as primarily caused by bladder pathologies.

      But most IRs use the IPSS scores as measures of the severity of BPH whereas many of the questions on this sheet relate more to LUTS which now, according to the AUA may reflect bladder problems.  So there seems to be a need for a new subjective measure of BPH and as you say a better physical assessment of the cause of the urinary retention problems and assignment of the proper treatment. I have been equally unimpressed with both the urologists and the interventional radiologists. Men need to be more proactive with their treatments and demand a clear picture of the physical cause of their retention problems and the best treatment option available to them . Neil

    • Vibes
      Vibes Howard31850

      Posted

      According to MedicineNet, Some possible Causes of urinary retention include:

      1)  an obstruction in the urinary tract such as an enlarged prostate or bladder stones,

      2) infections that cause swelling or irritation,

      3) nerve problems that interfere with signals between the brain and the bladder,

      4) medications,

      5) constipation,

      6)  urethral stricture, or

      7) a weak bladder muscle.

      I would think that, if FloMax helps, then enlarged prostate would be the cause. 

    • nealpros
      nealpros Howard31850

      Posted

      Well, it's supposed to be November 3, but I haven't been able to get Susan to confirm that. If I don't get confirmation in a day or two, I'll mention it to Dr. Isaacson.

      I agree that they need to compile the data. I'll mention that to Dr. Isaacson when I see him.

      I am about where I was before the first PAE. We'll see what the second one gets us.

      Neal

    • nealpros
      nealpros Howard31850

      Posted

      Part of the problem is that it's too easy to say, as they did in my case, "it's prostatitis, and we really can't cure that......"

      Neal

    • nealpros
      nealpros Vibes

      Posted

      Unless the Climax affects other areas than just the prostate.
    • nealpros
      nealpros

      Posted

      Damn keyboard.... I typed FLOMAX!

      Neal

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