Personal PAE at UNC Experience

Men's health
1

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

 

2

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.

 

3

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." ??

4

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.

5

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

6

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.

7

Neil I am so happy that you are doing great.  Don't let that doctor scare you that you have cancer.  He just want to get at your prostate and cut away.  Take care  ken

8

I forget to tell you.  At 47 they throught I had cancer.  Had 13 needle biospy all came back clare.  The doctor then told me well be can't be sure we shour go in and cut some away.  He wanted to do a turp on me.  I told him to ge to hell There was no way.  They try to get you in there one way or another  Take care  Ken

9

Neil,  we are the same age. I"ve been suffering with  prostate problems for around 12 years. Yesterday, I had to go in to the emergency room, because my catheter got clogged. The nurse, removed to old catheter, and replaced it with a new one, and I am fine now. My problem, is I can't void on my own.  I have to wear a catheter all the time.  My prostate used to be pretty large, 141 grams. After the turp, it was 101 grams...still  huge. I've never heard of the procedure that you did. Looking forward on your weekly report.  Good luck, and may you have a great flow!!!

10

Hi Dennis,

    Not sure if you're interested in learning more about PAE. If you are, there's another discussion (Has anyone out there had a "Prostate Artery Embolization??) in this forum that has over 1200 posts. Very informative.

11

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?

12

Neil, so glad that the procedure went well, and I hope to hear that your are experiencing improvement each week.   I believe the UNC study is done through their urology department, so I wonder if I may ask a favor.  I'm still dealing with total incontinence 5 + months after a GL procedure.  Physical Theraphy including STM-10 treatment hasn't helped, so I want to find the names of a good surgeon who does AMS 800 implantation.  (That's the artificial sphincter.)   I wonder if you are talking with the folks at UNC if you see if they have a name?   Thanks.

13

Dennis  It is a shame the a procrdure that was suppose to help you did not work and you have to where a catheter.  Have you tryed CIC and do it yourself.  If you can it would give you move freedom.    Good luck  Ken 

14

Hi Dennis - I also never heard of PAE before I found this forum which I now believe may have saved my life. The idea behind PAE is to just cut off part of the arterial blood supply to the prostate in the hope of shrinking it so it no longer obstructs our ability to pee. There is no surgery or going anywhere near the prostate. The doctors are called Interventional Radiologists (IR). They just use a fluoroscope to snake a catheter down towards the arteries that feed your prostate and then they pack those arteries with tiny beads to cutoff the blood supply. The IR usually enters the prostate artery through your femoral artery but now they also go through the wrist which is easy, safe and painless. It seemed like magic to me. I know that Dr. Ari Isaacson at UNC Chapel Hill has patients that are on permanent catheters. Maybe google him and send him an email about your situation. He will phone you or email you back right away - he's great about that. If you have trouble finding him let me know and I'll send you his email. Good luck. Neil

15

Hi Glenn - I am really sorry to hear about your incontinence. I am not familiar with what you write about here but I will look into it and see what I can find for you at UNC. Wish you all the best. Neil

16

Thanks Ken - those uros are really nasty - mine fired me as a patient when he heard I wanted to do a PAE and not let him ruin my life. It is hard to resist these guys because they are so arrogant and forceful but I put him off for several years just knowing there was something out there better and thanks to this forum I learned about PAE and now had it done. Even if the first attempt doesn't work I will stay with Dr. Isaacson and do it again as my prostate was one of the largest ones thye embolized so maybe they need to do it twice. I will not let a uro near me again. My ex-uro never warned me about the side effects of Proscar/Avodart and for years I thought I had some mental disorder casuing weakness and depression. I hope the damage by these drugs are reversible. Meanwhile my uro gets free trips from the drug companies for peddling this poison. And in the end it never helped my BPH one bit. Good luck to you. Neil

17

thanks Neil for starting this forum. Once the PAE is completed the dead cells will create scar tissue which will cause the pull of tissue you see in any scar tissue and reduces the prostate volume and size. Dr. Isaacson stated the first 4 months gives the greatest relief, but the process of improvement continues for many individuals for up to a year. I am in my 9th month since the procedure and stopped taking flomax almost 8 months ago. Still peeing good, not like when I was twenty but doing fine. Hoping that I keep improving, but happy with where I am after almost 9 months. I am 74 years old.

I agree with you that Dr. Isscason is a very professional doctor, but very friendly and helpful also. Before my procedure the PSA was 12 and two months after the procedure it was 3.4. Will have another PSA in Oct as well as the free PSA. Your PSA needs to be under 10 for the free PSA to be considered accurate. Looking for 25 % on the free PSA. Good luck to all

18

Hi Neil.  My prostate is 100g, mild median lobe.  I have (about 25 small) bladder stones and a kidney stone in my ureter that needs to be removed.  PVR about 550ml.  My urolgist said that there is "a chance" that 2 consecutive TURP procedures will be needed.  I am scheduled for 9/2.  Very scary, to say the least.  I am not sure what to do; I need resolution to the stone, at least, quickly, before my kidney backs up.  Very complicated situation.

I was surprised to hear that you were on prednisone for such a long period; thought that it was usually only for a few days to 1 week?  I guess that this helps prevent AUR the first week following PAE when the prostate expands slightly, before reducing, but seems to have helped you for a longer time period.

Dr Isaacson told me that symptom improvement (for my size prostate?) usually occurs after 2-3 weeks (80% by 3 weeks), but some patients respond faster, some slower.

Please keep us updated.  I am following your case daily and would be very interested to hear what happens over the next few days.

I have been trying to get two PCa screening blood tests performed here in the San Jose, CA area, PHI and Afinity, but Kaiser does not offer either one.  The test manufacturers are trying to help me to get them done here, but so far no luck. Has anyone been successful at getting these tests done in Northern California?

Thank you for all of your great input.  Look forward to hearing how you are progressing.  Wish you the best.  Mark

19

That should be Apifiny.

20

yes you have to watch them.  Just because there a doctor and they tell you something your suppose to go ahead and do it.  I think they get a kick nack for some of the companys.   I am so happy I have my urologist  I have had him for 2 years.  he has never force me to do anything.  He is all ways learning new things to help men out.  He still does the turp but not many.  He said that if that is the only way they he can help then he will ( if the medien lobe is in the bladder then he has to go in and clear it out )  But he will try everything he knows before that..Take care  Ken