Personal PAE at UNC Experience
Posted , 15 users are following.
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
alan1951 Howard31850
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Howard31850 alan1951
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mark1234567890 Howard31850
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Howard31850 mark1234567890
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Hi Mark - thanks for asking. At 3 weeks after my PAE my BPH symtpoms continue to worsen. I am very worried about damaging my bladder at this point even with self cathing which I hate. I am trying to get an MRI done of my prostate for Dr. Isaacson so he can assess why the PAE has not worked to this point and if it is working but just needs more time. He said I was a "textbook" case with perfect arteries for the embolization and should have seen some results by now. I guess that's why PAE is still considered experimental. How are you doing? All the best. Neil
nealpros Howard31850
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Neal
mark1234567890 Howard31850
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Howard31850 mark1234567890
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Hi Mark - I know that all our prayers are with you tomorrow morning for your procedure. I look forward to hearing how it goes - all the best.
I don't know anything about FLA. But laser ablation procedures like GLL and others in general are for prostates smaller than 100gm at most because they work on very small regions of the prostate so larger prostates require more heating time of the urethra with more consequent damage. This is also what limits the size of most transurethral procedures like Turp and Rezum and others. The time and heat required for large prostates does too much damage to the urethra.
Again all the best for tomorrow - my prayers are with you.
Neil
Howard31850 nealpros
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nealpros Howard31850
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Neal
mark1234567890 Howard31850
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The FLA doctor looked at my MRI and said that I would not benefit from the procedure because my bladder is so stretched out. Very scary. I am afraid that I might need catheterization for the rest of my life.
Still can not bring myself to self-cath (4x per day). I am considering going in for a Foley on Tuesday to use until the surgery on 9/19. This would be miserable, and I am also worried about developing a UTI just before surgery. Very bad situation. Thanks for praying for me. Mark
Google: FLA for BPH to learn more.
dennis47445 mark1234567890
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Mark, I remember when I was at that point where I didn't know whether Iwould be able to urinate on my own, or wear a catheter, the rest of my life. I told the nurse, that I would probably have to wear a catheter, because I couldn't imagine inserting a catheter several times a day. Well, that was several weeks ago. Today, after 10 days, I am fine with self-cathing several times a day! It looks creepy, but it's so much of a relief, to be able to empty the bladder completely. I wish I knew about this 10 years ago, when I first started having prostate problems. It's a great way to empty the bladder without having to wear a catheter 24/7. Mark, give it a try, and after awhile, it won't be that bad. I go slowly...takes me around 4 minutes from start to finish. It doesn't hurt, but just feels weird, having that tube slide down the inside of the penis. The result, makes it worth it. This is the next best thing, besides being able to pee like a firehose!
geoff90305 dennis47445
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Dennis, when you insert the catheter, do you have to "relax" your bladder to allow the catheter to get past both valves? I have had a catheter a few times, but every time, I woke up with one fitted. The removal sensation is very strange, but not painful at all. Usually the first natural pee is though, but soon subsides.
Geoff
dennis47445 geoff90305
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I don't think I'm relaxed when inserting the catheter. I am standing and holding my penis with one hand, and trying to aim for the opening of my penis with the catheter, with the other hand. When the catheter, is sliding down the shaft of the penis, I go very slowly. I know about when the catheter, is going to quickly start to fill with urine. I try to get ready for that moment, because with my finger, I cap the end of the catheter, so urine won't squirt out of the catheter, making a mess on myself, the toilet and the floor! If I go a little too fast, inserting the catheter, there is some discomfort. Not painful, but a bit irritating. When I do approach the bladder entrance with the catheter, it doesn't go in that easily. I have to keep the tension on, but not to the point of being forceful. I keep the tension steady, and eventually the entrance opens up, and the catheter slips in. I go in further with the catheter, about an inch, and stand there, while the urine drains out of the catheter. After all the urine is gone, I pull on the catheter, to let more urine flow out of the bladder. I kind of go a little back and forth, with the catheter, to make sure all of the urine is gone from the bladder. And yes, the removal sensation is a bit strange. It feels as though I am urinating, as the catheter slides out of the penis. I also try to keep the tip of my penis, clean with hydrogen peroxide, to prevent an infection.. So far, all is well.
Howard31850 mark1234567890
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Hi Mark - I'm sorry your surgery got cancelled -I was thinking of you.
Dennis' comments on self-cath are really worth considering. You might find that it is just what you need to do the trick for you and avoid bad surgeries and bad drugs. The guru of self-cath is a guy called jimjames over on the self-cath threads - he has quite an inspiring story you might enjoy reading - I'll get you his thread link if you wish. As for me, of my PAE fails I may very well consider slef-cath as an alternative to surgery. There are a lot of neat experimental treatments being developed for BPH now that are just once-a-year injections. So maybe if I self-cath for a few years these treatments will become available to the public and will cure my BPH once and for all. Good luck to you. Dennis has a good point you should consider. the yuck factor of self-cath leaves quickly once you see the benefits and it is safe and doesn't cost anything with insurance. Neil
kenneth1955 Howard31850
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Howard31850 nealpros
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nealpros Howard31850
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Neal
Howard31850 nealpros
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nealpros Howard31850
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He said that most prostatitis is not bacterial, and therefore CAN NOT be effectively treated with antibiotics. But, of course, prostatitis simply means "irritation of the prostate ", and that can be caused by BPH. So, that's why I'm going in early November for another pae which he said will be much more thorough than the last one. We'll see, I'll let you know.
Neal