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
gene97713 Bobcats
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.
frank27027 gene97713
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,
rdemyan frank27027
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?
Bobcats frank27027
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.
richp21 gene97713
Posted
Hi Gene,
Re: radiation exposure from PAE. A communication from rec'd from Julie at Dr Bagla's office on 08/15/16:
Rich
richp21 gene97713
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:
Rich
frank27027 rdemyan
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,
frank27027 Bobcats
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.
Bobcats
Posted
I was instructed - No eating or drinking from 12AM night before procedure, in my case I don't eat or drink past 7PM anyway, so essentially I fasted for about 14 hours prior to procedure. I was given the option to have a catheter, because of long procedure. I declined, then doc suggested a condemn cath, which I had never heard of before and I said why not.
Some time late in the procedure I felt the need to pee and doc said go ahead you have the condemn cath on. Well, having never pee'd lying down flat on my back on a surgical table ( with all kinds of equipment on me and in me... I could not start the flow. I tried to relax and just let it go but it would not go. Being that I had gone several times before the procedure and that I had not taken in any fluids since the evening before, I made it through to the end without peeing.
After the procedure I felt a strong urgency, and was told to just pee into the condemn cath. But , because they enter through the femoral artery, they DO NOT want you sitting up, standing up, or bending your knee for several hours. I still could not pee in that position. They ended up turning me on my side and I was able to void. After that they laid me back flat on my back and I was able to pee a little more. A few hours later I was able to sit up and pee into urinal and after that they let me walk into the restroom.
Now for the next few days during recovery, I felt a constant urgency and no matter how much I pee'd, I never felt empty. And lots of pain to go along with it.Fast forward only a day or 2 more and I feel GREAT!!! The first 3 days were hell, but doc told me that is actually a good sign that the embolization was effective.
I was not on any BPH meds, and I am still not!
rdemyan Bobcats
Posted
Thanks for that detailed account.
I'm considering PAE, but am concerned about the radiation dosage. Also, is there any chance that the beads could dislodge and enter other arteries at some point in the future. Would that be a possibility if there was a traumatic event like a car accident?
gene97713 rdemyan
Posted
No, beads can't dislodge after an accident. They are dissolved in alcohol. Technically it's a Gorilla glue to seal your arteries feeding blood to prostate. It can be wrong artery if your IR is inexperienced or other accident during the procedure. Rare, although, so far. Radiation dose depend on the experience of IR operator, type of equipment used and increases the probability to die from cancer by 1-2% lifetime. It's 52 for men anyway. No children after PAE, though.
Bobcats gene97713
Posted
Not that I'm having more kids... but I did not know that. Is that because of the radiation?
TKM rdemyan
Posted
My IR told me the beads have a one way trip into the prostate arteries.
richp21 gene97713
Posted
Gene,
Re: Radiation, please see my other post to you.
Re: no children. Where did you hear that? I have been following the PAE forums for three years, have had a PAE myself, and have never heard that at all.
Thanks.
Rich
gene97713 richp21
Posted
Rich, I have details of my measured dose from my IR, who performed my PAE. Including the initial angiogram of abdominal area, which becomes a roadmap for PAE, which is performed under subtracting X-ray imaging technique, my total irradiation was close to 80 mSv (mili-Sievert). Sievert is a biological equivalent of 100 rem. 200-300 ream is considered a fatal dose, or at least serious radiation sickness. 5-20 ream is considered enough for the chromosomal damage.
According to my IT, I was exposed to the total dose of 80-90 mSiev
He is a professor of Radiology and below is his response:
The prostate size shrinkage varies between patients. Also, the size change is not as important as the change in symptoms score. Some patients with very small prostate size change do very well and some with large size change do not do as well. Most studies report 30-40% size decrease at 3 to 6 months.
The radiation dose is measured in different ways for both fluoroscopy at CT. During the embolization procedure dose area product is measured, which is an indirect measure of dose. The DAP was 38250 uGym2 for your procedure. However this does not directly tell you your risk. There is no easy method to convert DAP to effective dose as the radiation is given in different projections and involves different organs. Higher dose procedure in the abdomen typically range 50-80 mSv, but this is just an estimate.
The CT scan provides dose length product. Yours was 1269 mGy-cm. There are conversion factors for CT. This likely corresponds to an effective dose of around 20 mSv. Again this is just an estimate.
Based on his numbers the total radiation was around 70-100 mSv or 7-10 rem, around 4-5% of the lethal dose. The average natural exposure to radon and thoron and frequent CT scans (which we are so proud to have easy access in US). It is around 10 mSv per year =1 rem).
So, I got roughly a 10 year of a natural average exposure.
I signed the consent form that asked me to not have children in the future.
There could be also side effects due to the random embolization of testicular and vesicular arteries, which can be fixed later. I don't feel it happened in my case.
Having children after PAE is not recommended but probably not excluded. Some people had normal off-springs after accidental 50 rem exposure. Just the risks are highly elevated. Compared to RE, when one cannot have ejaculate at all, it's a step forward.
All-in-all, PAE is one of the safest and less invasive ways to treat BPH and late term inoperable cancers (experimental) but produces moderate results for most, if compared to more invasive surgeries.
I'm very happy with mine so far...
Consider myself lucky, albeit average.
TRUSS( transrectal ultrasound) produced the measurement 120 cc. Many on this site call it mistakenly transabdominal ultrasound, which wrong. Nobody can measure your prostate size through abdominal ultrasonography.
Most likely, the current size is roughly between 80-90 cc, but enough to make substantial improvements in my LUT symptoms without changing my sex functions and continence.
Sorry for many technical details and numbers. I'm a scientist myself. I tried to address Riches high brows questions. I rarely talk (leave alone write) about topics that I don't know or don't understand.
So, if you plan to have off-springs (not recommended by geneticists) for men older than 50, and considering a PAE, think twice.
rdemyan gene97713
Posted
"Many on this site call it mistakenly transabdominal ultrasound, which wrong."
This is incorrect, at least here in the US. I have had two transabdominal ultrasounds (TAUS) and one TRUS (transrectal ultrasound). TRUS is more accurate than TAUS, but I used the TAUS measured prostate sizes to verify that dutasteride was working to reduce the size of the prostate. My TAUS results clearly list a prostate size as well as other information. I'll be having a 3T prostate MRI in about 10 days and will get a size measurement, median lobe determination as well as the typical "cancer" related parameters.
gene97713 rdemyan
Posted
I've read bunch of scientific papers devoted to comparison of TRUS, TAUS and CT, 3T MRI scans for prostate volume evaluation. Except for 3T MRI and high contrast CT , all ultrasound methods that use built in software are highly inaccurate: +/-30%. marketing tool of expensive US imagers from Siemens and Phillips...
BTW, according to my IR and Radiologist reading of CT, I do have enlarged median lobe. PAE took care of it perfectly. So all the "profies " giving advice on this site in regard of inefficiency of PAE in case of large median lobe should go back to medical school. Size matters only to extent if symptoms according to my IR. 3T MRI, which is still expensive and rarely approved by HMO is only effective for cancer diagnostics as a replacement for painful and often ineffective biopsy. y
rdemyan gene97713
Posted
From "Prostate volume estimations using magnetic resonance imaging and transrectal ultrasound compared to radical prostatectomy specimens"
Results:
Three hundred and eighteen (318) patients were included in the analysis. MRI was slightly more accurate than TRUS based on interclass correlation (0.83 vs. 0.74) and absolute risk bias (higher proportion of estimates within 5, 10, and 20 cc of pathological volume). For TRUS, 87 of 298 (29.2%) prostates without median lobes differed by >10 cc of specimen volume and 22 of 298 (7.4%) differed by >20 cc. For MRI, 68 of 298 (22.8%) prostates without median lobes differed by >10 cc of specimen volume, while only 4 of 298 (1.3%) differed by >20 cc.
rdemyan
Posted
Here's the concluding paragraph from the article:
"Prostate volume is routinely reported with pelvic imaging. Prostate volumes estimated using TRUS and MRI show excellent agreement with each other and with radical pros-tatectomy specimens. In our study, MRI demonstrated greater accuracy and may be used in cases where TRUS and MRI estimates differ significantly. The presence of a median lobe may lead to volume overestimation when using the prolate ellipsoid formula."
I understand that this is a comparison of TRUS and not TAUS with MRI. TRUS is more accurate than TAUS. However, TAUS is simple, pain free, takes but a few moments and can give a man a much better idea of the size of the prostate than a DRE. If the TAUS indicates a size that is of concern, then have the TRUS. That is what I did. My first and now ex uro told me for years that my prostate volume was 40 grams based on a DRE. I finally stopped believing him and convinced my GP to schedule a TAUS. The result was 145 grams and I went through the roof. I then had a TRUS which showed 100 grams. After 6 months on dutasteride, the TAUS showed 70 grams. I am not saying that the absolute numbers for TAUS are accurate, but the second TAUS showed an expected significant reduction. It was much easier for me to endure a TAUS than another TRUS (probe in the rectum for 15 to 20 minutes). Now, I will get an accurate prostate volume measurement from a 3T MRI in about 10 days. Also, my PSA has not fallen by half as expected when taking an alpha-reductase inhibitor. The 3T MRI will provide information on whether or not cancer can be readily seen in my prostate. If not, I'll forgo the TRUS biopsy. If cancer is suggested, I'll schedule a fusion biopsy.
gene97713 rdemyan
Posted
Sounds reasonable to me. I'm not a. Uro., but reD that TAUS is used in the parts of the world where TRUS is not available. Another review claimed that TRUS is only 30 % accurate vs CT, using real specimen. Certainly such studies are limited to radical surgery cases with cancer. Your personal experience and data supports my claim of low accuracy of most US imaging for size determination. My URO always underestimated the size of my prostate based on DRE. Hence, my results, PAE at 120-135 g, after retentions and periodic bleeding. He insisted on TURP after Urography, which established 125-135 g size. TURP is approved by FDA for prostates less than 80 g. So it would be a malpractice by itself. He denied me any laser treatment which is nit much better than TURP in side effects and healing time. A clinical study on PAE i San Diego, where I live, and Medicare sealed my fate. My PSA dropped to 1.6 ng/ml after PAE. The consensus is that PC is unlikely. I have a substantial clinical improvement on both scales. Have o idea what the. current size of my prostate is. If clinically justified, will get 3T MRI through Medicare.
rdemyan gene97713
Posted
"Another review claimed that TRUS is only 30 % accurate vs CT, using real specimen"
Just to be clear for others reading these posts: from the study:
"Patients receiving both TRUS and MRI prior to radical prostatectomy at one academic institution were retrospectively analyzed. "
So maybe TRUS is only 30% accurate vs CT, using real specimen, but not MRI as evidenced by this 2016 study which used real specimen. Can you post a citation for the '30% accurate vs CT study'?
gene97713 rdemyan
Posted
Actually CT with a contrast is very accurate in size determination of the prostate. MRI is not very effective for imaging of soft tissue, except much stronger magnetic field MRI, 3T MRI, which is not readily available in the most hospitals.
The following abstract of the recent study of specimens and TRUS estimates, gives the correlation coefficient R=0.64. With going into the specifics of the statistical science, that means roughly 30% variation between the specimens and TRUS computations:
The ability to estimate prostate weight is useful. Two commonly used methods for estimating prostate weight are digital rectal examination (DRE) and transrectal ultrasonography (TRUS). We evaluated the relative accuracy of these weight estimates by comparing them to prostate weight following radical retropubic prostatectomy (RRP). Between 1989 and 2001 more than 36,000 community men participated in a large prostate cancer screening study. Of these men 2,238 underwent RRP. In this subset we examined the correlation between documented preoperative DRE and TRUS estimates of prostate weight with actual gland weight. DRE estimates of prostate weight by multiple examiners correlated poorly with RRP specimen weight (r = 0.2743). However, TRUS estimates correlated moderately well (r = 0.6493). TRUS provided more accurate estimates of prostate weight for smaller glands, although it generally underestimated gland weight compared to the weight of the surgical specimen. In a large, community based prostate cancer screening study prostate weight estimated by DRE was shown to correlate poorly with actual prostate weight. Compared with DRE, TRUS provides a better estimate of prostate weight. In addition, TRUS measurements were more accurate in smaller prostate glands.
Should I continue? I have much more papers but I'm afraid that the community is not interested in learning about statistical studies. Can assure you that none of the imaging methods is good enough, but seemingly 3T MRI is the best. CT urography is good enough, better than TRUS. Very few URO or even Radiologists know that. They trust the advertisement of UltraSound imagers manufacturers. I already had that argument with my IR doctor who insisted on very unpleasant TRUS (my lasted 45 min of torturing my rectum by a poorly trained technician), while I had recent CT urography of the bladder and abdomen MRI (not 3T MRI).
Relatively recent (2014) paper:
"Variability in MRI vs. ultrasound measures of prostate volume and its impact on treatment recommendations for favorable-risk prostate cancer patients: a case series"
claims roughly the same:
Conclusions
The ultrasound ellipsoid and erMRI ellipsoid methods appeared to overestimate ultrasound contoured volume by an average of 9.34% and 16.57% respectively. 33.33% of those who qualified for brachytherapy based on ellipsoid ultrasound volume would be disqualified based on ultrasound contoured and/or erMRI ellipsoid volume. As treatment recommendations increasingly rely on estimates of prostate size, clinicians must consider method of volume estimation.
There much more that claims imprecision of TRUS, but even standard MRI is not much better.
gene97713
Posted
https://patient.azureedge.net/forums/images/upload-sm/1167370-636921136704823831.jpg)
gene97713 rdemyan
Posted
Are you satisfied now?
rdemyan gene97713
Posted
Unless I missed it, the citations you provided do not include CT scans of the prostate and do not support your claims regarding the accuracy of CT scans. The paper I cited used 3T or 1.5T MRI machines manufactured by Siemens. Further, for those reading this thread, Dr. K in Houston can provide you with a list of over 100 facilities in the US that will perform a 3T prostate MRI.
rdemyan
Posted
I guess you don't have any citations for your claims regarding CT scans. My only interest is in providing accurate information. You are making unsubstantiated claims regarding the accuracy of CT scan for prostate volume vis-a-vis TRUS. Why should men undergo a CT scan with it's associated radiation risk for the measurement of prostate volume when TRUS and 3T MRI available?
I'm ending this conversation.
gene97713 rdemyan
Posted
Probably yes. I posted a link to the histogram that shows quoted 30% difference between TRUS and MRI. CT scans with contrast are usually better but involve significant X-ray exposure, as almost any CT scan. They are not innocent, vs. the doctors will tell you. There are CT estimated comparisons with TRUS as well. Isn't MRI vs TRUS enough for you?
Also a hundred of 3T MRI machines is not that much for the country as big as USA, especially if you are not living in the major metropolitan center. Detailed 3T MRI is needed only for cancer diagnostics and Dr. K treatments. It can cost between $2500-$3500 and is rarely covered by insurances, only in cases of PC, when bipsy costs another $2,500
gene97713
Posted
Here is what you are asking for : The ratio between CT and TRUS measurements is 1.5-1.7 according to this study. Satisfied now?
A comparison of CT scan to transrectal ultrasound-measured prostate volume in untreated prostate cancer.
Hoffelt SC1, Marshall LM, Garzotto M, Hung A, Holland J, Beer TM.
Author information
Abstract
PURPOSE:
To compare CT and transrectal ultrasound (TRUS)-measured prostate volumes in patients with untreated prostate cancer.
METHODS AND MATERIALS:
Between 1995 and 1999, 48 consecutive patients at the Portland Veterans Affairs Medical Center were treated with external beam radiotherapy. In 36 of these patients, TRUS and CT measurements of the prostate volume were obtained before treatment and <6 months apart. The TRUS volume was calculated using the prolate ellipsoid formula. The CT volume was calculated from the contours of the prostate drawn by one physician, who was unaware of the TRUS volume calculation, on axial CT images.
RESULTS:
The TRUS and CT prostate volume measurements correlated strongly (Pearson's correlation coefficient = 0.925, 95% confidence interval 0.856-0.961, p < 0.0001). The CT volume was consistently larger than the TRUS volume by a factor of approximately 1.5. In men with a TRUS prostate volume less than the median (<28 cm(3)), the CT/TRUS volume ratio was 1.7, and it was 1.4 for men whose volume was greater than the median. The CT volumes were correlated similarly with the TRUS volumes regardless of the CT slice interval.
CONCLUSION:
A strong correlation was found between CT scan and TRUS measurement of the prostate volume; however, CT consistently overestimated the prostate volume by approximately 50% compared with TRUS.
rdemyan gene97713
Posted
" It can cost between $2500-$3500 and is rarely covered by insurances"
I can not speak on whether or not insurance covers 3T prostate MRI. However, I am paying entirely for my upcoming 3T prostate MRI at UCSF and the cost is $1300 with and without contrast. I also got a quote from a facility near Seattle and the cost is about $1200.
Costs may differ from what I am paying, but a man thinking about having a 3T MRI should talk with his doctor and get quotes if insurance does not cover the cost.
The study you cite involving CT does not appear to use "real" specimen (however, I do not have the entire article available to me). You continue to state that CT is very accurate, yet are unable to provide citations that support your claims.
richp21 gene97713
Posted
Hi Gene,
Thanks for your detailed response. I can only restate the communications that I rec'd from Dr. Bagla's office:
I imagine that different offices use different equipment and different procedures. I'd be happy to check back with Dr B's office (the communication I quoted was from August of 2016) if you would be interested to see what they say now.
Re: having children. Since the radiation your doc quoted is so high, that makes sense for his procedure.
Rich
adam76302 gene97713
Posted
Absolutely not true about kids after PAE. I talked to Dr. Justin McWilliams since i'm planning on having kids still and he said absolutely no reason you can't have after. When i mentioned someone said that in a forum he said that was misinformation and not true.