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Personal PAE at UNC Experience

Posted , 15 users are following.

Howard31850
Howard31850

Hello everyone,

Well as promised here is the start of my weekly documentation of the results of my PAE procedure. I had it last Tuesday (08/09/16) at UNC in Chapel Hill NC by Dr. Isaacson and his great staff. The prep and procedure were totally painless - it is true! I am a cowardly lion when it comes to anything medical but all the pre-procedure worries were in my head and unjustified. The only scary part was being wheeled into the procedure room but once there my high-tech nerdness took over at seeing all the 24th century Star Trek equipment and asking all about it.

I had expected a lot of post-procedure pain, especially with my 300gm prostate dying off but I have had NO pain at all or any discomfort whatsoever - no blood in the urine, no constipation, even the small incission in my left wrist and the IV spot in my right hand have heeled. True I have been on heavy duty drugs ( prednisone; heavy ibuprofen; antibiotics ) so these could mask the discomfort. These drugs finish tomorrow (Tues) so I'll after that. My peeing symptoms are better but that could just be the heavy inflammatories to keep my urethra open. Over the past month I had to self-cath a few times due to AUR. But I opted to take prednisone during the 3 weeks leading up to the PAE instead to keep me open.

Here's a brief summary of my BPH. I am 67 and otherwise ok. I started BPH symptoms 20 years ago and dealt with it the usual way until 2003 when I started taking alpha-blockers ( alfusozin). From 2005 to 2011 I added Proscar and then switched to Avodart until the present. The 5-alpha reducatse inhibitors destroyed my quality of life but kept me peeing. My prostate grew from 150 to 300 gms during the past 5 years but my saving grace is no median lobe or bladder obstruction. My current PVR is 350ml.

I refused to let my uro here butcher me with a turp or prostatectomy, but he did get to do 3 TRUS needle biopsies over the years, all of which were negative though he was quick to warn me that there must be PCa hiding in there somewhere.

I do hope the PAE works for me so I don't need a life-altering surgery. Even a 10% size reduction would really open up my flow. Right now it is too soon to tell.

I also had 2 liquid biopsies ( MiPS and Apifiny tests) for PCa. These are urine and blood tests that look at the molecular level for indications of PCa - my tests were extremely low. Also while my PSA is 12 now, it is the psa density that is important and again mine is very low. I mention all this because it is really important to eliminate PCa before focusing on BPH.

Dr. Isaacson and his staff were the best I have ever seen. He doesn't make you come in the day before for MRIs and CT scans since his new equipment allows him to see all the arteries and decide how to proceed realtime. Also, if your hand arterial flow is good (which he tests before the procedure ), then he enters through the wrist rather than the femoral artery which will save you a lot of discomfort afterwards and is much safer. I looked at the few other IRs doing PAE in the US and concluded he was the best. The wonderful people on this forum educated me, reassured me and guided me with this decision. I hope to return the favor now to others.

So I will update here every week and let you know how I am doing. And please post here with all questions/comments. I sure hope it works, even if I have to do it again in a few years ( when it may be covered by Medicare - it cost me $6450 plus $200. for drugs). The money is well worth it to avoid what the uros have to offer.

All the best to everyone.

Neil

 

3 likes, 161 replies

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  • philip42830
    philip42830 Howard31850

    Posted

    Thanks you so much for sharing. I go in next week for my PAE, I am nervous but really need this to work for me. I hope your symptoms continue to improve. Philip.

     

    • Howard31850
      Howard31850 philip42830

      Posted

      Thanks Philip. It really was scary for me as I have a phobia against hospitals. But everyone there tried to make me comfortable which helped a lot. I just focussed on the all the technology to keep my mind busy. I can say that there was absolutely no pain or discomfort. I was so happy to get back to the hotel feeling good and alive. I wish you all the best. I too need this to wotk for my BPH or I'll be back to self-cathing and major surgery. Dr. Isaacson tells me to be positive so I'll say that to you too. Please keep us informed. Neil

    • philip42830
      philip42830 Howard31850

      Posted

      Neil, that has really helped, I will focus on something, to take my mind off the procedure. I am not good in hosptials either. The urologist also found a lump on my prostate, unknown status but I have a low PSA, they are hoping the PSA will also reduce the lump and they will monitor the size and shape over the next 3 months - 1 year. I will keep you informed. Wishing you well. Philip.
    • 18R18
      18R18 philip42830

      Posted

      Philip, don´t be nervous. I have done my PAE 5 days ago. I will post a diary in the next days.

      I assure you, the ONLY unconfortable thing during the whole process is to lay down imobile for 2,5 hours.

      In the first hour you even have the mood to read a book while doctors are working.

      You don´t feel anything, even the anesthesia stitch is better than any dentist anesthesia you may have had during your life.

    • philip42830
      philip42830 18R18

      Posted

      Dear 18R18,

      Thank you for the support, I am ready to travel to Oxford in the morning. Feeling positive and focused on getting it done and back home on Wednesday. I will report back later this week. Best wishes Philip.

    • philip42830
      philip42830 18R18

      Posted

      I had my PAE on the 23rd, they were unable to treat me, due to the arteries around my prostate link into my bladder. It was worth a try.

      Philip.

       

    • steadyeddy
      steadyeddy philip42830

      Posted

      Hi Philip, sorry it didn't work out as you would have liked . When you say Oxford,is that the UK Oxford and was it private or NHS.   I'm down for a turps. I never thought to question about alternatives ,but thanks to all these contributers I feel more informed and empowered,even if I can't afford them privately I'm more aware of the options even though getting them may be a struggle.Thanks to everyone Eddy

  • richp21
    richp21 Howard31850

    Posted

    Thanks so much for your detailed report. Very helpful. I look forward to your updates.

    Re: Medicare coverage. I was told by Dr Sandeep Bagla's office (Vascular Institute of Virginia) that  "the procedure is typically covered by Medicare." ??

    • Howard31850
      Howard31850 richp21

      Posted

      HI Rich - I was told that if I were part of a study then it would mostly be covered by Medicare but since I lived out of the area I didn't qualify for any coverage so maybe that it was they refer to. But I got a lot of contradictory info on this and never could get a straight answer. The total cost was over ten thousand dollars but because I was considered self pay I got a discount down to $6500. but still a lot of money though it is worth it if I can pee again w/o a major surgery.

    • richp21
      richp21 Howard31850

      Posted

      Hi Neil,

          Weird all this insurance stuff. I'm not anywhere Dr Bagla's office, and they didn't mention anything about a study. I'll add this to my list of questions for them. Anyone else out there that has information about whether PAE is covered by Medicare?

    • nealpros
      nealpros richp21

      Posted

      Unless something has changed, the PAE is covered by MEDICARE IF you are in a sponsored study.

      Neal

    • richp21
      richp21 nealpros

      Posted

      Hi Neal,

          Curious as to know where you got this info from, so I have that in my brain when I talk to the office again. I'm definitely considering PAE, and sure would like to have the finacing clear before the procedure. Thanks!

    • kenneth1955
      kenneth1955 richp21

      Posted

      Hello.  I just read a artical that if your on medicare the PAE is covered.  The procedure and anything that it has to do with it is all covered  Ken
    • richp21
      richp21 kenneth1955

      Posted

      Hi Kenneth,

            Can you send info so that I could locate the article? Don't send a link, as the moderator will quarantine the message and may delete it entirely. Maybe the name of the publication and the month and year, or something like that. Thanks!

      Rich

    • kenneth1955
      kenneth1955 richp21

      Posted

      I will look it up for you later.  I just put in turp procedure.  Some of the storys are I feel sorry for the men.  Wait I have a few minutes before I have to leave.  Put in Does medicare cover the PAE procedure.  Then go on the site  Prostatic Artery Embolization ( PAE )  The artical tells you about the procedure and at the bottom of the artical it said that if your 65 or on medicare all of it is covered.  
    • richp21
      richp21 kenneth1955

      Posted

      Thanks Ken. When I google "Does medicare cover the PAE procedure", I don't get a result for a site named Prostatic Artery Embolization ( PAE ) . And if I google "Prostatic Artery Embolization ( PAE ) ", I also don't get a resuklt for a site with that name. ??

    • nealpros
      nealpros kenneth1955

      Posted

      The article is about the pae research being done at UNC. If you participated in the research THEN the costs were covered. If you didn't, they weren't. Mine weren't. As I understand it, the research study is now over. My PAE cost about $6,500.00. Do you have a different source?

      Neal

    • kenneth1955
      kenneth1955 richp21

      Posted

      Im sorry your having a problem pulling it up.  I put  in search Does medicare cover PAE procedure.  When the page comes up it is the 7th one down Prestatic artery embolization (PAE)  Check that one it tells you about the whole procedure.  On the bottom of the page it said  If you are 65 or on medicare the whole procedure is covered...Just check it again to see what number it was  Ken.
    • richp21
      richp21 kenneth1955

      Posted

      Hi Ken,

         Still no luck. Only pots that I found says Medicare doesn't cover it, but that post is from early 2015. Any chance you could cut and paste the article here, or else send me a private message with the link?

    • kenneth1955
      kenneth1955 richp21

      Posted

      I found the same artical.  If you are in a trial it is covered by Medicare.  That is all I found.  Maybe they changed again  Have to look again  Ken
    • richp21
      richp21 kenneth1955

      Posted

      Thanks. Dr. Bagla's office has told me that they have had success with Medicare covering.

    • richp21
      richp21 nealpros

      Posted

      That's not what I was told by Dr. Bagla's office. They said it is covered and it is not a study. What's the source of your info? Thanks!

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