Non target embolization
Posted , 10 users are following.
howdy, I was wondering if anyone out there that has had PAE has had non target embolization. if so, what symptoms did you have? i had embolization of my prostate done about 2 months ago. relatively small prostate with big median lobe around 35 so chance for success was low, but wanted to go with what I thought was lowest risk option first. have not seen any benefit so far, but what is troubling is I developed anal fissures right after the procedure and my flow is worse, concerned my bladder and rectum may have gotten targeted instead of the smaller prostate. wishing at this point I didnt ever do the procedure
0 likes, 16 replies
drummer10 jon56211
Posted
thinking of having PAE but still looking into it what do you mean non targeted?? Ihave never heard the just PAE Where was it done?
ed70868 jon56211
Posted
I had my second PAE four months ago and also have a large medium lobe. The first one over 3 years ago allowed me to get off of Flomax so that worked for me at that time. This last one has not worked out as I had hoped. Both times I felt a little burning in my Colon and had a pain in the bladder area for months.
I now believe like many who post here that anyone with an enlarged medium lobe will probably not have a lot of success with having this procedure, but for me it was worth trying.
sam19736 jon56211
Posted
i would contact your doctor and see why that is?
Howard31850 jon56211
Posted
You are correct in your assessment. Most of the hyperplasia that causes BPH lives in the region around the urethra called the peri-urethral region. In order to reduce the blood flow in this region the IRs need to get aggressive which means getting their beads close to the urethra. But then there is a real risk of embolizing the urethra, rectum and bladder neck which is bad. The Chinese used to use graded beads which means they would inject very small beads to close the arteries close to the urethra and then increase the size of the beads outwards. But this resulted in unwanted or as you say untargeted embolization.
I would suggest you request a dynamic contrast mp 3T-MRI for the whole perineum region to see if any non-targeted regions were embolized. To improve outcomes some IRs have been getting more aggressive with their bead placement with increased risk. Good luck to you.
jon56211 Howard31850
Posted
hi howard, that's a good suggestion and what I was thinking. my IR doc is hesitant to do a followup mri because I'm not sure what they can do if it did happen to me. that's why I wanted to know if anyone else has concluded that they had the non target embolozation. never had a fissure in my life till right after the procedure and my flow was slow before, but now sometimes it's only a dribble that comes out to maybe 50ml. CIC many times a day to get by for now
Howard31850 jon56211
Posted
Jon - If I were you I would not wait to get the dynamic contrast MRI done ASAP for many reasons. I had a PAE a few years back for my large prostate. It did not help my symptoms even though it reduced my prostate size a lot. I had a 3T-MRI to understand why it did not work and the MRI showed that all the dead tissue was far away from the urethra. In speaking with the IR he said he could do it again and try to get closer to the urethra region but that it was risky to do these targeted procedures. At the time he criticized the Chinese for being too aggressive. I don't like lawyers but you may have a malpractice suit on your hands if the MRI shows it was caused by the PAE and has degraded your lifestyle as a result. Good luck to you.
TKM jon56211
Posted
Jon,
I had a PAE in 2013. It didn't help my BPH symptoms, but I have the enlarged median lobe. I research PAE alot at that time. Non target embolization can happen, although it is rare, I don't know the percentage, but would guess it's below 1%. I read of a case by Dr Pisco in Portugal where there was a non target embolization in a bladder, that caused an ischema there. They repaired it by another surgery, don't know what type, it may have been a catheter type surgery. Dr Pisco wrote it up as a minor issue at that time,
I have heard of fissures in the rectum/colon before after a PAE, that healed on their own within a short time.
They should be able to see fissures in the colon with a colonoscopy. They should be able to see an ischema in the bladder with a cystoscopy. If it is still a problem after 2 months I would definitely have it looked at, or bring it up with your doctor. I think the doctor who performed the PAE should cover the cost.
Thomas
jon56211 TKM
Posted
thanks for the feedback thomas. I had a colonoscopy that showed the fissures but according to the doc nothing else of concern and a cystoscopy but that doc mainly focused on the prostate, shoulda asked him to look for ischemia. I've contacted the IR doc to see if we can do another mri. since pae didnt work for you, how did you fix your problem? it's been about 8 or 9 years of the obstructive median lobe and noticed in the past few months how much worse flow has gotten
TKM jon56211
Posted
Jon,
That's the problem with many Urologists, they do a test like a cyctoscopy and don't tell you what they saw, or they were focused on looking for something else. I think we as patients should ask then to make a video of it and provide it to the us. If you want them to look for something in particular, like ischemas or enlarged median lobe you should ask them to look for it before they go in. We pay alot of money and go through pain to have these things done we should at least get the information we need to make decisions.
After the failed PAE I stayed on single dose Flomax (.4mg/day) for a couple years then advanced to double dose (.8mg/day)for a few more years. Finally in May 2018 I started self catheterization, which allowed me to stop Flomax for a couple months, but I started single dose again which allows me to postpone using the catheter until it is convenient.
I may have a procedure done within the next year. I was thinking about having another PAE done but targeting the median lobe arteries, but after hearing your experience, and what Howard said about ischemas in the urethra, I may go for Rezum or Urolift. Although Rezum and Urolift both puncture the urethra, is that any worse than an ischema ? Another problem with PAE is that the arteries seem to grow back and within a few years many guys need to have it repeated, or have another procedure.
Best Wishes,
Thomas
jon56211 TKM
Posted
soo frustrating totally agree, why the heck don't they video it. had 5 or 6 of them and everytime I ask, they make up a new excuse as to why they couldnt. glad to hear the flomax and cic combo is ok temporarily. CIC is buyng time for me until I can figure out what's going on. flomax makes me quite dizzy, so I cant handle the side effects. interested in dr picso using a catheter for repair if there was non target
Howard31850 jon56211
Posted
I also got very dizzy from Flomax and switched to Alfuzosin (xatral) many years ago and never had a problem with it and it works really well for me.
I always ask for CDs from my colonoscopys and cystoscopys and get them though sometimes I have to pay a small fee. These are your property by rights and the hospitals/doctors have to make them available to you. I also get my MRIs on CD too as well as CTs and Xrays.
tom86211 TKM
Posted
Thomas,
I also had a PAE in Aug of 2017 - only about 20% effective. Went off my Flomax for a year, then back on it, and now on two per day, same as you. I am completely used to it so no dizziness.
I have studied all of the various procedures for years, and am leaning toward a bipolar TURP with plasma button cauterization rather than anything that causes swelling of the prostate post op. I can barely pee now, and am concerned that any further swelling would cause me to go into total retention for weeks if not longer. Had that experience five years ago after radiation to the prostate for cancer. Had six Foley's in and out for five weeks until I could go on my own, then had to self cath a few times after the last Foley came out. I just want the prostate tissue that is causing my retention to be removed. Good reports on this forum from men who have recently experienced bipolar and/or plasma TURP. Post op experiences seem a lot better than what I am reading about other procedures. High probability of retro from the TURP which is why I believe so many are looking at alternative procedures. That is not a concern for me.
Tom
tom86211 Howard31850
Posted
Howard,
I got a bit light headed when I first went on Flomax, but got used to it and never had a problem since. The Alfuzosin is listed with my pharmacy as an antihypetensive, in other words, lowers blood pressure. Tamsulosin is not listed as such. Studies I have read indicate that Alfuzosin is more likely to lower blood pressure than Tamsulosin. I think it's always a good idea to know what your blood pressure is before and after beginning taking any of these types of medications.
Tom
Howard31850 tom86211
Posted
Thanks Tom - yes I did read that as well but for some reason alfuzosin never affected by BP. I was 125/80 before it and am still at that level today. t goes to show that we all respond differently and we all must do our own testing to see what works best for us.
I am glad your PCa is under control. How do you test for it now? Also what size is your prostate? My uro keeps wanting me to do a button turp but my prostate is very large. I am happy with CIC for now. Good luck. Howard
tom86211 Howard31850
Posted
Howard,
I was treated for prostate cancer in the summer of 2014 - HD Brachytherapy, two sessions, two weeks apart. Doctor was the author of the HD Brachytherapy textbook, so he was great. However, after the second treatment my prostate swelled up and I went into total retention for five weeks. Second treatment was on a Friday, but by Sunday ended up in the emergency room in tremendous pain as my bladder filled up, and up and up. Nurse put in a catheter and drained off 1250cc of urine. All pain went away. Had six Foley's in and out for five weeks until the swelling went down. Got used to the catheter, and slept well because I never had to get up to go to the bathroom - just once per night to empty the leg bag.
PSA tested every three months until recently, now every six months. For several years PSA has come in at 0.1, latest reading 0.2 - within the normal testing range. Uro says no worries. However, I have read that it can take 15 or more years to be "sure" that the radiation got all of the cancer. I am going on five years and am not paranoid about it.
Prostate size before my PAE was 56gm, now, probably a bit smaller but I haven't had it tested recently. But, it's not the size that matters, it's the shape, and apparently I have a median lobe (or something similar) that is blocking urine flow from the bladder.
On one Flomax I was peeing 3ml/second. On two, I am up to 5ml/second. When I get up at night, I have to pee several times to get the bladder cleared enough to get back to sleep. If I don't do this, I can feel the urine in my bladder, and I have to get up again and try again. Usually the second through fourth time I get out about 25ml each time. I can eventually feel when my bladder is empty enough so that I can fall asleep again. This can be a 10-20 minute process, so I never get a good night's sleep.
I am ready for this ordeal to end and will be making another treatment decision soon. Am leaning toward bipolar/plasma button TURP because I want prostate tissue to be reduced - don't want to go through another five weeks of total retention again.
Tom
Howard31850 tom86211
Posted
Hi Tom - I am glad your PCa is gone and I hope it never returns. I've had a few scares that way too but so far ok.
I understand what you are saying about never getting a good night sleep. I used to call it "peeing off the top of the bladder" all night. So I learned CIC a few years back and now over 4000 under my belt or should I say urethra! My natural voids are good during the day at 250cc and my CIC is also 250cc following the natural void. But the real benefit from CIC is that I only get up once now during the night. I CIC before bed and then I am usually awakened about 3 am with a full bladder. At that time I cannot natural void at all so I just CIC and usually take out about 500 to 600 cc. Then I take a tylenol and get back to sleep ok till 7 am. Since you already know about CIC you are way up the learning curve so maybe you should consider it now so you can sleep better and then take your time deciding what to do. FLA is the perfect procedure for a large median lobe and most men have had their problems fixed this way with no ill effects. But it is not covered by insurance and is very costly, for me at least. Good luck. Howard