My PAE at UCLA April, 2019

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I had my PAE on April 23rd , 2019. I went with Dr Justin P. McWilliams at UCLA. Today is Friday the 26th, 3 days after.

My prostate was 70CC with no median lobe issues. I am 54 years old and I live in Los Angeles. I had 3 complete retentions over the past 2 years and so it was time for me to take action.

I want to write a detailed report to this forum only because I would have never know of PAE if it were not for this forum. Today is day 3 and I will update over time.

The procedure itself was easy, but long, about 3-1/2 hours.

They put me under a twilight sedation, meaning I was awake. I may have dozed off here and there but I felt like I was present for the whole procedure.

After the procedure was done, Doc said everything went great !

I was discharged at about 4pm and my wife was there to drive me home in L. A. Rush hour traffic. It was a long 1-1/2 hr drive and I felt the need to pee the whole way. I had a pee bottle but it never got to that point. When I got home I pee’d a fiery stream that burned the head of my penis.

The first night was hell with intense pain at the end of my penis. I did not sleep a wink because I was up every 5 minutes to pee. Yesterday was better, peeing about every 20 minutes but still with intense pain and today, I am sitting here writing this with about 1-1/2 hours since last I pee’d. Pain is subsiding. I thought I would be back at work in 2 days, but not in my case!

Last night I was able to get some sleep and lasted about 3 hours before I awoke, it was a strange sensation…I always wake up about 3 hours after I go to bed with a strong urgency to pee, but last night seemed different, the urgency was not so strong. Something is changing in my body and I hope it keeps on going!

Right now, starting the stream is a little difficult, but it builds and I feel completely relieved. It is too early to see any real results. I am not on any Flomax or anything else. ( Except what Doc has prescribed for recovery, antibiotics and steroids. I refused Cipro by the way. )

I can say I am very happy with the young Dr. McWilliams and I am glad I stayed close to home for this procedure. Travel would have been difficult. ( I almost flew back east for Dr. Bagla ) I feel confident that Dr. McWilliams knows exactly what he is doing and hopefully I can update you all with good news over the next coming weeks and months.

As I said, it was in reading the posts from my BPH brothers on this forum that lead me to have this procedure done, so I want to contribute my experience for others. I have been reading these posts for many years and I have FINALLY done something about it.

Thanks to all of you!

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  • Posted

    Congrats, Bob! I had mine in SD last year March 29th. The same experience. It could be painful for a while till some parts of prostate will die from ischemia. You can expect improvements up 12 months and beyond. My prostate was 135 cc before PAE. A few total retentions due to neck obstruction, bleeding from arteries. After 3 weeks it worked like a charm. Be patient, it takes time. It should help. Worked for me. Good luck.

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    • Posted

      Thanks Gene,

      I feel so charged up to be on the other side of this forum, meaning being one of the guys who has done a procedure and can give feedback now. Hope you have continued good health!

      Bob

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  • Posted

    glad you have had a success so far.

    i had a PAE at ucsd last november with Dr PICEL which has helped a great deal but still with some night time urges. over all much better at this time

    my prostate was large over 125 g and after operation pyrridium was prescribed to lessen pain and discomfort in bladder along with your meds,

    so i will have my 6 month evaluation in JUNE and will up date you afterwards.

    REGARDS

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  • Posted

    thanks for sharing. it helps with those who will have to make a decision or have to be ready for it. pls keep update.

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    • Posted

      sounds like you are looking for a solution? I avoided all drugs and procedures for as long as I could. I mean mostly i didn't want to face the reality. It became normal for me to carry a pee bottle in my car or stop 2 times on my 1 hour drive to work or make sure i didnt drink too much water when traveling or more recently always carry an emergency self catheter. I have high anxiety with meds and doctors and medical procedures. It feels good to be proactive!

      I am just hoping to have some normalcy back in my life.

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    • Posted

      Oddly enough, I chose to have a catheter on hand and no drugs. I tried drugs, but I just don't feel like myself on them. I only had to self cath twice in the last 4 months, that is after the ER visit 2 years ago. After my first self cath, I kind of went back to normal voiding, and so it was a false sense of "everything is fine " until this last march, I was on a plane and went into full retention. That is when I made the decision to get the PAE.

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  • Posted

    Day 4: Last night I slept very well! I only got up one time to pee. Feeling much better overall with a real sense that I have made the right choice.

    Also, I want to keep re-emphasizing my doctor , Justin P. McWilliams. On this forum there are 3 "GOD-LIKE" doctors, Dr Bagla , Dr Isaacson, & Dr Karamanian ( with Dr Picel getting a few honorable mentions here and there ).

    I was ready to go to any one of these 3 or 4 until my wife did research and found McWilliams. He also specializes in the PAE procedure with many successful procedures under his belt . He is well published on the subject and and he is the Principal Investigator on a current PAE clinical trial with the entire world renowned UCLA MEDICAL RESEARCH team by his side ( which I did sign up for ). He is a 45 minute drive from my house. He does not really exist on this forum. Just google this clinical trial # NCT03527589

    My point is: I now do believe that we here on the west coast have other options and that Dr. Bagla is not our only choice. I was desperate and I was all set up to go with Bagla, he has all my paperwork, etc and gave me the go ahead( and I'm not knocking him- I'm sure he's great!) But I am so glad that I stayed close to home and that I am in Dr McWilliams vested care for the next 3 years.

    Now as to cost, that may be another matter. My Helthnet PPO did pay for the CT SCAN that McWilliams requires BEFORE he agrees to treat you. UCLA Team handled all that with no hassle to me. I don't know yet how my insurance will reply to the PAE bill.

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  • Posted

    Glad to hear that the procedure went well.

    This question is for anyone who has had a PAE. I am confused as to whether or not a catheter is required. Some say yes and some say no. My understanding is that some doctors will insert a catheter during the operation because it is a fairly long operation. If they do, is it left in for a period of time after the operation?

    My prostate is also 70 grams in size as measured by transabominal ultrasound (originally 100 grams in size, but I've been on dutasteride for eight months; I'll get an accurate measurement when I have a prostate MRI in a few weeks). How much reduction in size is expected?

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    • Posted

      Rdemyan,

      I had a PAE at OHSU in Portland Oregon 2013. It did not help me probably due to enlarged median lobe. I chose to have a Foley catheter installed before the PAE thinking it would give the doctors a frame of reference in their images. It is very important for the doctors to know where they are inserting the catheters. It turned out that it was useful because I did not have to get up to urinate in the middle of the procedure. It is also useful after the procedure while you are lying in bed with a sand bag on your femoral artery for several hours waiting for it to heal. They took the Foley out before I left the hospital after 8PM and made sure I could urinate on my own.

      Thomas

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  • Posted

    The catheter after PAE is not required. There is no need for it because PAE doesn't cause worsening of the retention, except for intense pain of the dying parts of the prostate and side effects of the painkillers used. I stayed on the alpha-blockers (uroxatral) for a while after the PAE. Now, 13 month after the procedure I'm off all the medications=, except 5 mg Cialis, which helps very moderately with the prostate function. Remember, it's still probably around 80-90 g in size after reduction from the original 135g. PAE works best for large prostate, with medial lobe or not. At sizes of greater than 60 g you have enlarged median lobe whatever what. I don't understand why many patients on this site are so obsessed with median lobes having a large prostate anyway. Common sense will tell you that 100 g prostate has a median lobe enlarged by a factor of 1.7 ( a cubic root of 4).

    The life is absolutely different after PAE, it's like being 30 years younger down there. I can stay away fro bathroom for 5 hours, can hold my urine at will, no urges. That's given that I already had deformation of the bladder neck and thickening of the bladder wall obvious on the CT/MRI scans. BTW standard MRI scan has not much sense for bladder/Prostate, only 3T MRI can see soft tissues. CT comes with a substantial X-ray exposure, let alone PAE is equal to 4-5 CT scans

    Regarding RE and ED question. Only improvements come with PAE. ED at the same level as before the procedure. Cialis, Viagra, silicon ring help a lot., if anybody wonders. Never was a huge problem, but naturally at 72 is not the same as in my 20th. It's more about the stage of your arteries and how much damage to the nerve bundles on the prostate sides you have experienced during the years of the BPH suffering and taking dutasteride, which in my view kills erection and libido better than any surgery. Yes, it can shrunk prostate as effectively as PAE but at the expense of lifetime impotence. The choice is yours and your URO who doesn't care about your sex life. Testosterone applications or injections help a lot after 6-12 month.

    RE is possible a few month after PAE (but it was present due to alpha-blockers before PAE). In 6 month after it's gone, about of ejaculate increased substantially, but the fore of expulsion didn't. Who cares, I don't plan have kids at 72 and after that amount of X-ray exposure to abdominal area.

    When total healing after PAE is complete many patients, including me, report slight improving in ED and substantial improvement in the length of the sexual intercourse (longer), which typically suffers too during BPH years.

    So far the stream overshoots the toilet due to years of customary approaching the toilet closely to avoid dripping on the floor.

    No nocturia or a t most once the night due to the decreased size of the bladder (physiological for my age) and wall thickening due to the postponing of any procedure on my prostate. Doctors' fault rather than mine. Due to exclusively using DRE for prostate size assessment (and a couple of relatively easy cystoscopy) nobody had an idea about my 135 g prostate, which can be characterized as humongous and malpractice of my PCP and Urologist. Should take them to court, probably, but it will be more expensive than PAE.

    I hope I answered most of the answers of enthusiasts and critics of PAE.

    Based on scarce evidence available from this forum I conclude that a few unsuccessful PAE are due to unexperienced IR, small prostate or causes due to bladder neck problem unrelated to BPH. It could be taken care by incision made by experience URO. Very few knowledgeable, unfortunately.

    Wish everybody on this forum fast relief of BPH symptoms and restoration of all sexual functions. It's possible with some effort and right treatment.

    Best to all of you.

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    • Posted

      Hi Thanks for all that information on PAE. I was concerned about the antibiotics they gave you? I'm 89 years and am just gettin better from an infection called C-diff. Its caused by taken antibiotic Clindamycin,and some others, i was told by an infectious desease doctor.I also have been doing CIC 3 years and no NV at all, Now I'm thinking PAE thats why I'm wondering the names of antibiotic they gave you? How long where you in complete retention {no NV}?

      Thanks for this great info. If you would PM me this info that would be great/.

      thanks

      fran,

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    • Posted

      Fran: It's my understanding that probiotics dramatically reduce the chances of getting C-diff. Were you taking probiotics when you got C-diff?

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    • Posted

      My Antibiotic: cotrimoxazole DS 800-160 mg tablet

      Commonly known as: Bactrim DS,Septra DS

      Take 1 tablet by mouth two (2) times daily for 5 days.

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    • Posted

      Hi Gene,

      Re: radiation exposure from PAE. A communication from rec'd from Julie at Dr Bagla's office on 08/15/16:
      
      The radiation involved for the procedure is less exposure than a typical CT-scan study.
      

      Rich

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    • Posted

      Let's try that again.

      Hi Gene,

      Re: radiation exposure from PAE. Communication rec'd from Julie at Dr B's office on 08/15/16:

      The radiation involved for the procedure is less exposure than a typical CT-scan study.

      Rich

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    • Posted

      Hi ,Probiotics are good,however my C-diff was caused by antibiotic Clindamicin. This pill is notorious for this C-diff. Dentists will prescribe this for infection. DON"T TAKE THIS PILL!!

      frank,

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    • Posted

      Hi Thanks for this info. This was the antibiotic after PAE procedure?Hope your feeling good. I'm 89 and the thought of have this pain for 3 days turns me off. Did the whole procedure during and after take 3-1/2 hours?Would you PM me this info?THANKS,

      frank.

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