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PAE for BPH - Post Procedure

Posted , 18 users are following.

michael8714
michael8714

I had the PAE procedure performed September 10, 2015.  Dr Bagla at Inova Hospital, Alexandria, VA perfomred the procedure.  First of all, the internentional radiology department at this facility is new and top notch.  I underwent an approximate 44 minute MRI with contrast the day before the procedure.  Dr Bagla discussed the results of the MRI with me and advised I should have a successful outcome based upon reading the results of the MRI.  He did say however...you won't like me the first two weeks.  Yup...no kidding.  Immediately upon recovering from the fog of the procedure, there was intense burning sensation at the prostate, equate it to a 4" piece of rebar heated to white hot and inserted in the anus.  There's no chance of finding a comfortable position.  I began to think that flying home to NM the next morning was a bad decison and, yes, I'd advise one additional day if you're traveling long distance.  Frequency is increased, inability to empty and the burning seems to move around in the anatomy down there from one place to the other each day.  I'm 9 days post procedure and the constant burning sensation has for the most part subsided.  There is still a burning when I urinate...all this was expected so no issues...just grit the teeth and get throught the first few weeks.  The one thing I didn't expect and I'd like feedback from those that had the PAE, the head of the penis has turned some blotchy colors, dark purple blotches and the very tip of the penis at the urethra opening has swollen and is extremely sensitive to touch.  That means everytime I move, walk sit and the tip rubs against underweay or pajamas there is extreme sensitivity and pain.  Has anyone else experienced this sensation post procedure, PAE?  I had a urine culture at the local clinic, checking for bladder infection but all was clear.  The Inova Hospital Docs suggested I visit with a local urologist because they don't list this sympton and common to the procedure.  Any thoughts, comments would be appreciated.  I do expect a good outcome but I suspect I'll see full recovery and a good outcome about a month down the road.  Michael

0 likes, 69 replies

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  • don30615
    don30615 michael8714

    Posted

    Michael (and others who have had the PAE): As I understand the procedure, there is no catheter inserted through the urethra before, during, or after the procedure, Am I right?

    Good luck, Michael. Keep us posted. 

    Don 

    • caringbah
      caringbah don30615

      Posted

      Not so Don. With the radiologist who did mine it was standard proceefure. I think it can be a source of the burning feeling that many experience when urinating. 

      Mine was place and removed while I was out to it.

    • don30615
      don30615 caringbah

      Posted

      Interesting. With Dr. Bagla (at INOVA Hospital in Alexandria, VA), it isn't common practice--at least according to the info they provide online. 
    • nealpros
      nealpros caringbah

      Posted

      I discussed the catheter with Dr. Isaacson at UNC. Doctors can have different procedures. He said that the procedure could take 2-3 hours, and I would be half awake during that time. I said that during that time, I would have to stop him to urinate, and if I could go 2-3 hours without urinating, I wouldn't be having the procedure. He laughed and said that I would have a urinal between my legs, and could urinate whenever I wanted.

      The problem may be one of terminology. Above, I was writing about a URINARY catheter. The tube he uses to place the beads may also be called a catheter. It is only in blood vessels, and perhaps causes postoperative pain in some men because it is threaded into fine arterys in the prostate. Also, some doctors may be using a URINARY catheter during the surgery because they have never had to wear one of the damn things, and don't know what pain in they can cause after withdrawal. Tell your doctor you don't want a urinary catheter, and want to use a urinal, unless you have special problems.

      Neal

    • michael8714
      michael8714 don30615

      Posted

      Don, that's correct...nothing through the urethra....The catheter is robot guided...at Inova Hospital anyways, and inserted into the femoral artery, guided to each lobe of the prostate and inserted deep enough to release embolizing beads.  Keeping fingers crossed here for a great outcome!  Will keep everyone posted.  Michael
    • caringbah
      caringbah nealpros

      Posted

      Neal I had a URINARY catheter and a general anaesthetic. I was totally out to it for the whole proceedure. As somebody pointed out different doctors use variations on a theme. So it is not correct to say that urinary catheters are never used in PAE. 

      I read that catheters can cause bladder spasms and that's what I think the "burning" sensation is. In a different procedure entirely another time I had a urine bottle between my legs for the whole operation. That worked and no risk of UTI. 

      Peter

    • nealpros
      nealpros don30615

      Posted

      You're welcome. This sharing of information and ideas is what these forums are all about.

      I forgot to mention that the doctor, at least here in the states, might also be using a URINARY catheter to help run up the bill for the hospital, if he or she thought about it at all.

      Neal

    • nealpros
      nealpros caringbah

      Posted

      I agree that it is incorrect to say that urinary catheters are never used in a PAE, and I said the opposite.

      Neal

    • Jezzaman
      Jezzaman nealpros

      Posted

      I tell you what guys if wearing a catheter is worse than the PAE itself then bring it on; I had to have one in for nearly 2 months after an episode of ACute Retention and I did get used to it. when it came out finally there was no pain whatsoever, so I really would'nt worry.

      I am hoping to get PAE done in UK but there only seems to be one main place where its done, so am searching around. I would be pepared to go to Europe if necessary.

    • don30615
      don30615 Jezzaman

      Posted

      The man who more or less invented this procedure is a radiologist in Portugal by the name of Pisco. He's done something like 900 procedures so far. Google Pisco+PAE and his contact info will come up. Good luck!
  • scott46135
    scott46135 michael8714

    Posted

    I had the procedure done 9/2/15 at UNC. Procedure itself was painless. Not unpleasent at all because of the drugs given to me. A week after the procedure I started riding my mtn bike. I beleive this caused blood in my semen. This is getting much better now. Will give it another week or so before biking again. I still get up at night but I drink a couple of beers and some wine most evenings. I have improved flow, no retention feeling, no urgency, no more planning where and when I must pee. I'm not 100% cured but at least 60%.

    Ever since I finished the antibiotics and steroids I feel really really good, not that I felt bad before but now I feel extremely good. I have no idea why.

    Dr. Ari Isaacson knows his stuff. I have confidence in him and 100% recommend him.

    I paid $700 down and just paid the bill $4,830. I will also have to pay the deductible on the CT scan.

    • arlington
      arlington scott46135

      Posted

      Hi Scott,

      I'm having PAE w/ Dr. Isaacson next week.  If you have the time, I wanted to ask you:

      - what your IPSS# was before the procedure?  now?

      - what was the size of your prostate before?

      - did you have an enlarged median lobe?

      - did they go in through your wrist or your groin?

      - were you self catheterizing before the procedure?

      Thanks a lot!

    • caringbah
      caringbah arlington

      Posted

      Hi Arlington,

      My IPSS score before PAE was 28 , 5 months after it is 2 !!

      All the best for your procedure....you have made the right choice. 

      The best part of Post PAE experience is that your urunary problems become forgotten. You just don't think about peeing anymore...you just do it like in your pre BPH days. 

    • arlington
      arlington caringbah

      Posted

      Thanks for your well wishes!

      Wow!  That's a great outcome.  My IPSS is about the same or maybe a couple of points lower.  Anything close to your improvement would be fantastic!  I'm hopeful.  I've been self cathing for more than a year - so it may be a bit tougher to get those results.

    • scott46135
      scott46135 arlington

      Posted

      22 or 23 before 13 now

      50 grams

      I think so but not sure

      wrist

      no but was worried I might have to in the future

    • arlington
      arlington scott46135

      Posted

      Thanks a lot for taking the time, Scott.  That's very helpful.

      You seem to have come a long way already in just 3 weeks!

      Hope you have continued success and improvement.

    • nealpros
      nealpros arlington

      Posted

      When I talked to Dr Isaacson, he said he prefers to go in through the wrist since you spend less time in the recovery room that way.

      Neal

    • arlington
      arlington nealpros

      Posted

      Thanks Neal.  It took me some time to wrap my head around the wrist concept, but i think I'm on board now.
    • Howard31850
      Howard31850 nealpros

      Posted

      Hi Neal - my PAE at UNC is in 2 weeks now. I saw your notes about stool softeners and will heed your warning. Did you have to stop any of your drugs/vitamins before the procedure? Any other tips for me? And most of all how are you doing now? Thanks

      Neil

    • nealpros
      nealpros Howard31850

      Posted

      I believe that I had to stop some meds, but it was last December, and I honestly don't remember which ones. They should be sending you some paperwork soon which will describe that, but if they don't, you can always call them. The staff is very helpful, and Dr Isaacson is extremely patient oriented.

      As for how I am doing now, my results have not been as good as those of many others. I have an extremely small artery on one side, less than 2mm. Dr Isaacson was able to embolize it, but not much blood was going through it in the first place, and other blood vessels may have regrown, or I may have some other problem. At Dr Isaacson's suggestion, I have just had another MRI to see what's going on, but it has not yet been thoroughly analysed. Before the PAE I was getting up 8-9 times a night. After, it went to 2-3, and now it's 4-6, so we'll see where to go from here.

      In any case, good luck to you. Also, minimize your exercise for a week or two after the procedure, and let us know how it goes. If you are driving home, have a large mouth bottle with a good cover in the car, and plan on not missing too many rest areas.

      Neal

    • Howard31850
      Howard31850 nealpros

      Posted

      Thanks Neal. I will write his nurse Susan and ask her as I have not received anything yet. I'm sorry to  hear your progress as good as hoped for - maybe it will yet improve. In the past few weeks I went in AUR twice and had to learn to do CIC which is awful. My BPH does not have a median lobe or any bladder neck obstruction - it is just a massive (300gm) prostate clamping down on the urethra. When I take a 50mg prednisone pill it clears me up for a few days but I hate to take that drug. If the PAE does not work for me then I am facing a prostatectomy so I sure hope it works. I'm flying in from Toronto so I know that 2 hour flight may be a problem with peeing. We plan to stay in a nearby hotel for 5 days afterwards but it sounds like that is just when I might regress from your report. This BPH sure is a nasty disease for all of us. Thanks again, and good luck and I will report my experience for everyone. Neil

    • nealpros
      nealpros Howard31850

      Posted

      Well, I hope your PAE works well. If it doesn't, you might consider a Urolift, before you consider a prosteotomy. There's much to read about that on this site, but chances are you won't need it.

      Neal

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