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PAE for BPH - Post Procedure

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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

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  • Christopherpdx
    Christopherpdx michael8714

    Posted

    I just had the PAE with Dr. Issacson today at UNC. I am only 35 years old. I am posting this because I feel truly blessed that I was able to have this procedure done and want to spread the word. I will post updates as I get them.
    • Lawrence06345
      Lawrence06345 Christopherpdx

      Posted

      Hi Christoph,

      Now that its been a  month, what has been your experience and outcome so far?

      Lawrence06345

    • Christopherpdx
      Christopherpdx Lawrence06345

      Posted

      I'm not sure yet. Flow seems to be better but not urgency yet. It's a slow process so hard to tell ay this point. Only side effects noticed are ejaculatory force is way less than before, although it's improving, and after 3 weeks of blood in semen it is now thicker and whiter than it has been in about 5 years

    • Lawrence06345
      Lawrence06345 Christopherpdx

      Posted

      Thanks for the update Christoph. I have been wondering if your recovery & results might me different because of your relatively young age to be needing to try this procedure. Hopefully the urgency will eventually settle down in time.

      Thanks again

      Lawrence06345

    • Howard31850
      Howard31850 Christopherpdx

      Posted

      Hi Christopher,

      Thanks for the update. I too will be having the PAE procedure with Dr. Isaacson next month at UNC. Did he perform an MRI the day before to check the structure of  your arteries? I know Dr. Bagla does that. Also, did you have to travel to get there? I will be flying in from Canada and wonder how long I will have to stay in a hotel.

      I hope you continue to improve so you don't need to worry about BPH at your young age.

    • arlington
      arlington Howard31850

      Posted

      Hi Neil,

      I also had the PAE w/ Dr. Isaacson.  I had a CT scan on a Sunday and stayed in a hotel that night.  Then I had the PAE the next day and stayed in the hospital that night (no extra).  The following day I was released and stayed in a hotel for one more night and left the next day.  So I drove about 4 1/2 hours and arrived and had the CT scan on a Sunday and left the area on Wednesday morning.   I strongly recommend this sequence.

      Best of luck!

    • Howard31850
      Howard31850 arlington

      Posted

      Hi Arlington,

      Thanks for this advice. I was just told to report in at 8 am on Tuesday and the procedure will start at 9 am. I guess I better write Dr. Isaacson and ask him about this.

      How are you doing now compared to before the procedure? Were the drugs they sent you home with sufficient to accomodate your recovery or did you need to refills? Thanks for responding.

      Neil

    • arlington
      arlington Howard31850

      Posted

      Hi Neil,

      My procedure was opn 9/28/15 and it has only hleped me maybe 5-10 %.  I am still self-catheterizing as much as before and am on the same drugs.  The urgency and nightime trips are slightly better.

      Having said that, I still believe in the PAE and think Dr. Isaacson is great and a straight shooter.  My case may have been complicated by the fact that I had gone in to Acute Retention 14 months prior and had never been able to not catheterize.  My pre and post PAE natural versus catheterizing voiding amounts didn't change much.  Also, I have a large median lobe pressing in to the bladder just to the side of the bladder neck (another complication).  Mt prostate wasn't that big: measured at 57cc's pre-op.

      I wouldn't let my case discourage you as I think it's the best chance with the least side effects and may even consider doing it again.

      Good luck!

      The drugs they gave (filled by me before i left the hospital)  were more than enough.

    • Howard31850
      Howard31850 arlington

      Posted

      Hello Arlington,

      Thanks very much for your explanation. I am sorry to hear the outcome for you wasn't better and I certainly wish you all the best and hope that maybe the improved response for you  is yet to come. My prostate is just under 300gm and has doubled in size over the past 5 years while I have been on Avodart. Usually it should shrink by hal and not double.

      But my saving grace, if there is one is that I do not have a median lobe. The prostate has just been growing lengthwise along the urethra. I think the lack of a median lobe has kept me from having to cath as I have not had acute retention (yet), I hope the PAE will buy me some time. My rocedure is on Aug 9 and I am apprehensive as I don't even like getting my teeth cleaned. But your help as well as the others here have given me some courage. Thanks again and I wish you all the best.

      Neil

    • arlington
      arlington Howard31850

      Posted

      Thanks Neil.  There was very little pain/discomfort during the procedure.  I think you'll have a good outcome.

  • ed70868
    ed70868 michael8714

    Posted

    I had the PAE prodecure Oct 28th 2015. It took about a month after the procedure to get off of flomax completely. I had to take two a day to continue to urinate. Dr. Ari Isaacson at the Univ. of North Carolina Medical Center preformed the procedure. I had been following the procedure process development for several years. I am 73 years old and had to be a self pay patient except for part of the MRI. After income tax, refund due to the medical cost, and the insurance paying some on the MRI, my total cost came to about $4500. Total original cost was about $7,000. The medical center gave me a total cost for the procedure before the surgery in writing. 

    I choose this center due to location and the experience of the Doctor on PAE. He personally wrote emails to me on several ocassions and called me twice to explain the procedure and discuss the possible outcoms and complications. 

    The procedure was preformed as an outpatient. The total procedure took about 2.5 hours which is about standard. I was in recoverly for about 3 hours. They would not let me leave until I urinated. I stayed in a local hotel for a couple of days so I would be close if there were any problems. I had none. 

    It took about a month for me to start urinating without any problems. Slowly my sex life and related functions started to work better due to getting off flomax. 

    My prostate size was 140g and I have no idea what it is after the surgery since I would have to pay for the MRI myself. My PSA before PAE was 12 and after six weeks it was 3.4. I had two biopsies before the procedure and both were negative.

    Dr. Ari Isaacson gives you the option to use the vessels in the back of you hand or the femoral artery as entry for the procedure. I choose the hand since it creates fewer potential for problems in us old guys. Some individuals could not use this option due the size and functional capability of the hand arteries. 

    I am very happy with my results and if required in the future would do it again to not have to take flomax or another medicine for urinating. 

    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks Ed for your post. I am scheduled for the same PAE with Dr Isaacson at UNC in two weeks. The cost has gone up a bit to $6500 for self pay but apparently the previous day scans are not needed as he uses a new cone beam CT scanner. I am 67 and my prostate is 280 gm with no medium lobe or bladder neck obstruction. My psa also is 12. I take both Flomax and Avodart and would love to get off them. My flow is weak and during the past 2 weeks I have had to do a self-cath twice. Did the PAE cause you to go into temporary retention due to inflammation? All the best. Neil
    • ed70868
      ed70868 Howard31850

      Posted

      Neil I thought my prostate was large. Man yours is huge. I did not notice any greater problems with urinating than before. I took a few predisone pills but that was all. I had a little pain for a few days and some stinging for maybe a week or so. I did pass a little blood in the urine once and awhile but not much. But the first time I had sex after the procedure I notice some blood which is normal, but it does get your attention. 

      I stopped one of my flomax tablets after the first week which was probably a little some. I took myself off the other one two weeks after, but in a couple of days I had to start taking one a day again. I tried that procedure for the next two weeks and at the end of the fourth week i did not need any flomax. I still take cialis every other day or so, but less the longer I not taking any flomax. 

      i have never had a cath. to urinate. I was also in what they call excellent health, so they did not expect any after procedure issues and thankfully it worked out that way. Since my PSA test was only 6 weeks after the procedure I am looking forward to see what it will be in Oct when I get tested again. 

      I am from Jacksonville, Florida and had called three places in the US for pricing and Portugal. Portugal and UNC were about the same price considering all cost. Portugal set you up to stay around the area for a week to be sure no after procedure issues. That is not true with UNC, Georgetown Medical Center was the highest at 13,000 dollars for self pay plus all the cost to stay there. 

      Your decision will be whether to use the arteries on the back of your hand or the artery in groin area. He will check to see if you have good blood flow in one and then the other artery on the back of the hand. The reason is he is checking to see if one artery is blocked the other one can handle the load. The cath. they put in the hand will block one artery. I choose the hands, since the rate of problems with the other location is much higher and takes longer to heal. You wear a pressure badge on either.

      You will find the whole team friendly and professional. I woke up twice during the procedure and ask them questions and then they put me back to sleep. LOL .. One question was when are we going to get started and they laughed since I had been in there for over an hour. I counted six people in the room at that time. 

      When I had the PAE procedure he had not had a major issue with anyone at that time. 

      Let me know how it comes out. If you have any more questions ask on this blog.   ed

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Howard31850
      Howard31850 ed70868

      Posted

      Thank you very much Ed for your post. Did you have full use of your hands right afterwards or did it take a long time for your hands to recover?

      After you got home did you require any medical help from your own doctors or from UNC? My uro here has abandoned me because I am going to the US for help but it is not his prostate and he just wants to do a prostatectomy on me so I can't count on him for any help after I get home. Thanks Ed. Neil

    • ed70868
      ed70868 Howard31850

      Posted

      no problem with the hand after a few days.. It was interesting that it took 4 months or so for the area where he entered to disappear. It was a small red spot and on rare ocassion it would itch. Its gone now. He enters though the wrist. They strap it down with the wrist facing up. The pic line used for the drugs during surgery was more painful. They take it out right after procedure and no problem.

      Same issue with my uro who called it experitmental and that was that. I have not been back to him and did not need to. I may go back in Oct after my PSA test to see his reaction.  

      I am happy with my results. I also realize that the prostate will keep growing so i might need to have it done again in the future. Interesting side note my sonogram indicated a prostate size of 170 while the CT measured it as 140. 

    • Howard31850
      Howard31850 ed70868

      Posted

      Hi Ed - well next Tues is rapidly coming up for my PAE at UNC. I've read your posts here several times to get up my courage. We will fly in from Toronto on Monday and then it's game time at 9 am on Tuesday. Did you have any extensive abdominal pain or bleeding as the prostate tissue died off? Your prostate was quite large as is mine (300gm) and I've heard that this can lead to long/painful recoveries as so much tissue has to die. Also, did you penis tip get plugged with any of the tissue as it died causing you to need to cath to clear it? Dr. Isaacson doesn't require a visit the day before now as he says he can figure out the arteries well enough during the procedure. I'll opt for the wrist as you suggest here. Thanks again from a nervous nelly - Neil

    • ed70868
      ed70868 Howard31850

      Posted

      Neil... did not have any problems with bleeding or tissue blocking the penis. . Only after sex the first couple of times. I had some pain off and on in that general area but not sure it has anything to do with the prostate. I tend to eat to fast which I thinks creates the pain. 

      Your prostate is twice as big as mine was before the PAE> 

      Interesting he does not do aa pre session any more. I guess experience does that. Remember the area where they enter the waist might stay a little red for months, but no pain.. mine just itch sometimes. I guess they amount of time they were in that artery creates this issue. Good luck with the procedure. i hope it goes well for you. I have been off flomax which I was taking two a day for almost 8 months. Sex life is getting back to normal. So at this point I am a happy camper. I do realize I may need to do  it again in the future, but that is fine. Love the relieve I am getting. 

      If you fly back the next day or two after the procedure you will have some pain from the sitting. I left to early and we drove the 8 hours home. Not a wise decision. 

      My wife and I are on a cruise and low to no internet service.  

      ed

    • Howard31850
      Howard31850 ed70868

      Posted

      Thank you very kindly Ed for responding while on your cruise. I'd rather bet there than Chapel Hill now. I note your comments and advise and appreciate them and your good wishes. Dr. Isaacson has a new CT machine that allows him to simulate where the beads will go in real time during the procedure so he will get the results he wants without complications. It is amazing new technology that allows him to avoid the previous day CT scans. All the best to you - enjoy your cruise! Neil

    • ed70868
      ed70868 Howard31850

      Posted

      Neil how did it go for you. I am back from our cruise and slowly heading to Vegas. I notice if I get dehydrated then the flow is slowed. So might consider drinking a lot of fluids for a month or so. Glad to see his CT scan is upgraded. One of the rare problems with the PAE is that the blood supply can be reduced to the neck of the bladder if not placed correctly, causing some potential isssues. .One case required surgery.  Better CT results should elimate this issue which would be great.
    • Howard31850
      Howard31850 ed70868

      Posted

      Hi Ed - thanks for all your help prior to my procedure. The PAE went perfectly - just as you described. There was no pain or discomfort and everyone was great. Dr. Isaacson performed a Barbeau test on my left wrist just before I went in. He had setup for a femoral entry but switched to a radial entry which made the recovery very fast.

      The only problem is that I feel too good. For a 300gm prostate I was warned there would be a lot of discomfort after the procedure which is why we stayed in Chapel Hill for 5 days ( we just got back yesterday). But I feel as if I have never had anything done to me!! My peeing is good right now but I have been on heavy duty anit inflammatoried like prednisone and ibuprofen so they have always helped me in the past. I finish these drugs tomorrow and worry my retention will return. He did successfully embolize both sides and said I was a textbook perfect case for this procedure with the best possible access arteries. I sure hope it works as my uro ere is chomping at the bit to get to me. Dr. Isaacson says to give it more time which is fine as long as I don't need to self cath. He said my large prostate (300gm) with no median lobe or bladder neck obstruction should show the best response to PAE. The whole procedure took 2 hours. I begged them to let me stay awake and watch the monitors - it was so interesting but they put me out half way through when I asked someone to move aside so I could see one of the monitors! Thanks for asking. Be well. Neil

    • ed70868
      ed70868 Howard31850

      Posted

      So glad you did so well. I had to stay on one flomax a day for a month. I had been on two a day before the procedure. I kept trying to get off the one a day, but I had to start taking it again. The last time I stayed off for four days and then when back on it for a few days. After 30 days I was doing fine and have not taken another flomax in almost 8 months. I have a two month supply of Flomax. LOL hope I never have to use them again. 

      So it may take a month or so for everything to settle down for you once off the medications. 

      lets me know how you are doing every few weeks. 

      ed

    • Howard31850
      Howard31850 ed70868

      Posted

      Thanks Ed. I started a new thread called "Personal PAE at UNC Experience" that I will update weekly - a few guys asked me to start this "diary" which I am happy to do. So far I am still on my BPH drugs (Xatral which is like Flomax and Avodart). My heavy duty anti inflammatories from the hospital end today so I'll see how I pee before trying to stop anything. Did you ever get your psa measured afterwards to see if it dropped?

      All the best

      Neil

    • ed70868
      ed70868 Howard31850

      Posted

      My PSA dropped from 12 to 3.4,, thanks for sharing you experience. Guys are having to make tuff decisions and these postings help.
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