My PAE at UCLA April, 2019
Posted , 22 users are following.
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!
2 likes, 71 replies
Bobcats
Posted
There are also 2 other good results that I forgot to mention.
Bobcats
Posted
Happy 4th of July !
Just a quick update for the silent readers out there ( like I used to be ) - 10 weeks post PAE. I read this forum for 5 years before doing anything.
My results are nothing short of a miracle! I have ZERO side effects! I have not had a single BPH symptom in 10 weeks. My stream is not like a teenager, but more like when I was in my 40's...but the greatest improvement in quality of life is that I no longer have extreme urgency followed by extreme hesitancy! This used to be a daily occurrence, now I can hold it for as long as I need to and easily void when I get to it!
I feel sorry for those of you who have had poor results from the procedure, but for me it has been better than I ever expected!
BlackForestTerp Bobcats
Posted
Bobcats, as a silent reader (my first post), I'd like to thank you for this thread, and am happy that this treatment has worked for you. I don't think without it (and the very long PAE thread on this board) that I would have known enough about the possibility of PAE for my own treatment.
My experience is very close to Bobcats. 57 years old, suffering LUTS for about 3 years, prostate 95 grams, and two episodes of UAR (one of which required ER and a foley for 5 days). I also have an enlarged median lobe, which is pushing into my bladder neck, and as a result, I have some muscalature of the bladder walls. I was put on Floxmax last year and Finasteride just recently. Where my situation diverges is that I was diagnosed with PCA 1.5 years ago, and am in Active Surveillance. I was only offered Rezum as a treatment option from my 'former' urologist, as he felt every other treatment option would limit a radical prostatectomy as a treatment option if the PCA progressed from Gleason 6 to something more aggressive. Funny, as I really don't want a RP anyway, as there are some much less invasive options in the PCA treatment pipeline (ie. TULSA-PRO, Fexapotide ). This same urologist never mentioned PAE, and I did not know of it. I switched urologists in the meantime due to constant pressure to get a RP for a Gleason 6. In the meantime, I found your post, and started researching PAE. I discussed PAE with my new urologist, and while he had heard of it, he reiterated that the American Urological Association considered it experimental. He did, in his defense, say that he had heard of patients having success with it. He didn't think that a PAE would contradict possible future treatments, but I would need to talk with an IR about that.
I did know about FLA as an option (ie. kill 2 birds with one stone, BHP and PCA), but I just don't have 20K plus to do that procedure. I also knew about self-catherization, and tried it once, but it went pretty horribly (let's leave it at that).
I live in Colorado, and through this board, found out about Dr. Charles Nutting in Lone Tree, CO. I went to see him Mid-May for a consult. He's fairly experienced at PAE, told me he had just gone over 200 PAEs in his practice. I really liked him, he's a straight shooter and a good listener. We talked about my unique situation, specifically my concern that I don't eliminate any possible current or potential PCA treatment options if my cancer were to progress. We also talked about radiation exposure, and increased future cancer risk. I was satisfied with his answers to all my questions, and made the decision to try PAE. A week later, his office called saying that Cigna had approved the procedure, and I had the PAE at SkyRidge Medical Center on May 31st.
Thanks to all the information on this board, I pretty much knew what to expect for the procedure, both during the procedure and recovery. The procedure was easy, though I was pretty desperate to void after 90 minutes on the table (no catheter with Dr. Nutting). I was under conscious sedation, and it went by in flash. I remarked to Dr. Nutting in my hazy state that "it felt like it had taken 30 minutes", and he joked that "it felt like 3 hours to him". He was really hustling back and forth between the table and the desktop area where his monitoring PC was located.
Driving home from the procedure, I started to experience discomfort, and by the time I got home I was p*****g needles frequently. The one pain I didn't expect was the feeling that a tennis ball had been rammed up my ass covered with kerosene, and then lit remotely! Between those two pains, like you, I didn't sleep a wink the first night. This went on for over 2.5 days, with Day 2 mainly consisting of sitting on the toilet as I was peeing lava every 20 minutes. I was really questioning my decision at that point! Around day 3.5, all pain started to abate, and my voiding frequency went way down. Sunshine, Rainbows and Unicorns!
I'm now at Day 38, and I'm doing really well. I'm only peeing 1-2 times a night (down from 4-6). I can hold off voiding for 3-4 hours, and have been able to sit through a movie without heading to the rest room. My stream is stronger, and I'm definitely increased voiding volume (at one point I could only pee about 50-60 ml; that's a whole lot of trips to the bathroom). I've had moments where my stream is really strong, like strong enough to miss the toilet. I'm overall really pleased that I found out about this procedure, and hope that it's bought me some time if I have to undergo PCA treatment.
Anyway, hope this info helps somebody, and again want to thank Bobcats for this informative thread.
Bobcats BlackForestTerp
Posted
Great news! I am glad my report was able to inspire you. I too learned of PAE from this forum from Gene and a few others, but the good news fades ( on this forum ) and the problems live on. I mean it is understandable, how many times can I say "everything is awesome". But if it is not awesome , I will come back again and again to try and find answers.
Let us know of your progress!
gene97713 Bobcats
Posted
BobCats and BlackForestTerp,
Thank you for sharing your experience in such details. I wrote probably more posts on this forum than anybody of you. I'm a relative veteran of PAE, currently 15 months post-op. I have absolutely identical experience as you both have, with exception that I'm much older (almost 72, albeit in fairly good physical shape), and suffered from the whole spectrum of BPH syndrome roughly from the same age of 54, due to the inaptness of my Uro and PCP, who didn't advise anything beyond TURP or Robotic RP. I was advised against any of these procedures by my fiends, who went through any of this radical medical surgical procedures, which usually have a long recovery time with almost inevitable consequences, which many on this forum chose not to disclose or were lucky enough to get the most modern variants of them from the the best trained Uro surgeons. My prostate was 125 g at the time of PAE and it was missed by any of my doctors who performed GRE regularly, but never ordered at the an MRI, TRUX or even looked at the existent abdominal CT scans made for a different reasons. My case just reflects the state of art of our "best in the world" for profit medical services which is very little oriented to the welfare of the suffering patient but rather follows "safe" routine for the doctors, who follow the recommendations of different medical associations created by medical malpractice lawyers and voted by the narrow circle of outdated medical professionals, who stopped reading research literature 20 years ago.
I also like BalcForest had a huge median lobe, obstructing the bladder neck, thickening and diverticula of the bladder wall, bleeding from prostate arteries into urethra when straining, voiding 50-60 ml every half hour, and extreme urgency each time. I was warned by my experienced PCP and URO (both in their 60s) that PAE is pre experimental and can have dire complications.
I took my risks at UCSD with a young professor with only 13 PAE under his belt but trained IR, who learned the best PAE techniques under Dr. Ari Isaacson from NC.
My results are pretty similar. No side effects, whatsoever, my state of the urinary system is close to what it was at 40th, if not better. I don't use any meds, albeit, contrary to numerous unsubstantiated statements on this forum, there is a whole literature of improved sexual functions in BPH patients using 10 mg per day of Alfuzosin, an alpha-blocker of the last generation that help to relax the bladder neck muscles together with the muscles of the prostate's capsule, which is the main cause of BPH side effects.
My PSA dropped from 4.6 ng/ml pre-op to 1.2 ng/ml at 45 days after PAE and is in the range of 1.6-1.8 ng/ml 12-15 months later. Due to the relatively high free PSA -30% before PAE, which puts the probability of the PC around 16% at my age, we have decided not to pursue any PC studies like biopsy or 3T MRI due to the "absence of the medical needs". Probability of the low grade PC is still high at my age, but given the absence of symptoms, low PSA reading for a prostate which is still probably in the range of 70-80 g, my chances of aggressive PC are fairly small.
According to my IR and my own calculations, my total dose of radiation experienced during the PAE and previous required CT angiogram of my iliac arteries was around 90 mSv, which is a substantial dose of radiation. That is not including the approximately 120 mSv from the lifetime CT scans, X-Ray fluoroscopies, and different unneeded nuclear medicine studies ordered by different doctors in the circumstances when a low dose X-ray picture would suffice.
Regarding the perceived risk of the radiation exposure during PAE, I will address this again and the last time. Yes, it's substantial, if compared to the natural dose of 3 mSv per year in USA from all sources, including medical diagnostic and therapy irradiation. It's equivalent to 30 years of the natural irradiation from cosmic rays and Earth sources, but post the age of 60-70 the probability of a lifetime lethal cancer grows only from 52% to 54% for the US male. Very little for one person, but translated to much more death from cancer for the entire population of hundreds of thousands (if not millions) of patients around the country. 90 mSv is an exact equivalent of of 9 REM of cumulative life time radiation, which is being put into prospective is roughly 5% of the lethal dose of the exposure, or in other words, 50% of adults will die within a few month after exposure to 250 rem of X-ray of gamma radiation. Maximum radiation exposure for the workers dealing with hazardous radiation at US Government nuclear facilities is 5 rem per year or 50 mSv. Last 10 years, nobody in US Government Labs received more than 2 rem per year (or 20 mSv). Nuclear industry workers don't have elevated risk or number of deaths from radiation related cancers. I hope that analysis will help everybody to make their own decisions regarding radiation exposure risks related to any (including PAE) IR procedure. For instance, frequently used CT scan of heart and surrounding arteries for assessment of the calcium score and blockage bears 16 mSv exposure. It's a lot but compared to the chances to have a second fatal heart attack appears to have a bearable amount of internal cancer risk.
I took my chances and only future will tell me whether TURP or SRP could be abetter choice for me.
I will you all luck and never have this experience of extreme BPH symptoms again.
Personally I still hold a strong opinion that given radiation risks and difficult first weeks after PAE, when part of the organ is dying and causes us an excruciating pains around rectum, and inside during the first post-op week, it's the least invasive procedures preserving most of the functions. The success is due mostly to modern techniques and extremely well trained IR doctor (most often a professor with years of experience), rather than "for profit" operating URO surgeon.
It's not much experimental anymore, rather very sophisticated procedure performed under the control of the most advanced X-ray and computer equipment with special expensive catheters and plastic beads. Available not everywhere.
arlington Bobcats
Edited
Hi Bobcats,
My brother is considering a PAE. Would it be possible for you to give us another update on how you have done since this one on April 26, 2019?
Thanks a lot and best of luck.
Bobcats arlington
Edited
Hi Arlington, I've been meaning to update my progress, so thanks for asking.
The short story is that I couldn't be better!
I had an MRI done on May 15th, 2020, a 1 year comparison for the Docs study. The Good news is that my prostate measures about 54 g. The actual original on April 2019 was 84g. I originally posted 70g back in 2019, but I had that wrong. The PAE successfully shrunk my prostate by more than 30%. I already knew that I was doing great, but to have physical confirmation gave me great peace of mind. I wanted to throw prostate shrinking party!
To recap, I am young and healthy (relatively as related to prostate ) - 55 years old, 145lbs, 5'6". I eat right and exercise regularly and I don't drink alcohol. I have always felt a bit young to be having such a hard time with my prostate starting at about 45 years old, but that's life.
I can drink what I want and I can hold my bladder as long as needed without urgency. I am up 0-2 times per night, depending on how much I drink and how late I stop. On average I am up once per night.Night time was never my biggest problem before PAE. Frequency and extreme urgency and full acute retention were my demons. All of those symptoms have completely gone and when I pee, I void completely and easily and no starting and stopping. Some have described "garden hose" but I would not go that far. Its just consistent and complete and NORMAL! The PAE was a perfect solution for me, how long it will last?...that is the question but I can tell you that
Normal is so awesome...
Hope you are well!
arlington Bobcats
Posted
Thank you very much, Bobcats. I'll pass that on to my brother - who lives in Santa Barbara and is hesitant to come East to Dr. Bagla as well (I live in DC). I'm happy for you!
Bobcats arlington
Posted
Dr McWilliams is Top notch! but dont discuss money or insurance with him, he gets that part wrong- he has people for that. I had surprise costs and out of pocket was $7-8k .
UCLA is a research facility and full hospital and they will get as much as possible from insurance companies, but again, doc has no control over that.
I would have paid twice that amount for my results.
I could call or email Dr McWilliams right now and he would get back to me within an hour. Most docs have lost this personal care, hiding behind assistants.
PM me if you want to pass my phone# to your brother.