Posted , 210 users are following.
I had one on September 10th, 2014 and would love to compare notes with anyone else that has had one. Thank You. ChuckP PS Some people just call it a "PAE" for short.
8 likes, 2499 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
stebrunner ChuckP
Posted
Had my PAE done last Thursday (about 4 days ago) with Dr. Charles Nutting of RIA Endovascular in Denver. The procedure took 3 hrs with another 2 hrs in the recovery room. They used Twilight sedation, and I felt no pain. At times when the imaging camera was out of the way, I could see my arteries up on the screen--pretty cool!
Dr. Nutting went in through my groin and embolized both sides. I had been self cathing (CIC) for the 2 1/2 months prior, and they put in a Foley catheter for the duration of the PAE. They wanted to use the same size I used for CIC so they used a FR14 with a coude tip. No pain or problems with its insertion or removal.
For about 8 hrs after the procedure, I had sudden, frequent urges to urinate. Each time I peed a weak stream. Dr. Nutting told me that this would last for a few hours, then the prostate swells for a few days. I'm in that phase now. The self cathing was painful and tricky at first, but has been settling down. Looking forward to my prostate shrinking.
Now on day 4, I'm feeling better. I've been taking Advil to reduce inflamation, and I'm taking a 7-day course of antibiotics.
Last December I experienced acute urinary retention--they drained 7 liters out of me! 5 urologists have told me I will never regain bladder function and that I will have to self cath for the rest of my life. I went ahead with PAE, because my prostate was already at 90 cc and getting larger and something needed to be done. I also wanted to make self cathing more comfortable and easier.
In the past few months of self cathing, I've noticed that my bladder is signaling me when it's time to urinate, and before I self cath, I try to pee naturally. On occasion, I've peed a weak stream for a couple of seconds. Most of the time it's been some dribbling. The signaling and the dribbling tell me that my bladder is trying to work. I'm hoping PAE will remove the obstruction and that I can eventually restore bladder function.
My Blue Cross insurance declined to cover the procedure, saying that it isn't covered by Medicare (U.S.). I opted to pay out of pocket. Time will tell if I've made the best decision for my prostate issue. At this point I'm optimistic.
Stebrunner
ss3234 stebrunner
Posted
Jezzaman stebrunner
Posted
Did I read that correctly, you had 7 litres drained out of your bladder with a catheter? That sounds more than horrendous. I do sympathise as I had the same problem a year ago; went into complete retention and they drained 1.3 litres. I looked it up and the normal capacity of a bladder is only 400- 600ml! Mine has gradually recovered, and I had a PAE in Feb this year which has seen further gradual improvement, but it does take time. I havent done any extra bladder training or anything however, have you?
Let us know how things go for you.
regards
Jeremy
stebrunner Jezzaman
Posted
Hi, Jeremy,
Yep, 7 liters. Two uros at the Mayo Clinic looked at my CT-scan and exclaimed, "Wow! That's amazing!" Not that I was trying to amaze anyone! LOL! The odd thing is that I had no pain, and had been urinating pretty much as normal, except that my stream was a little weaker. The uros think my retenion occured slowly, hence the lack of pain.
Thanks for sharing your PAE experience. It's encouraging to hear that your bladder recovered. Keep us posted on your continued healing.
I haven't done any bladder training, but plan to use a method a poster on this site's thread on Self Cateterizing as an Alternative to TURP. The poster is Jimjames. His situation was similar, and he used self catheterization (CIC) to rehabilitate his bladder. Part of his method was to make sure his bladder didn't get too full. If you want more info on his story, you can find it on that thread on this site.
Last week CIC became more and more difficult for me. I could still do it, but had a lot of pain. My doctor had a Foley put in for 7 days to give my urethra a rest, and that will be taken out in a couple of days. Hope then that CIC will be more comfortable.
Are you having to CIC now? Did you have to for a while after your PAE? I expect I'll be able to void some on my own when the Foley comes out, and I expect I'll have to CIC at least 2 times a day if not more.
Stebrunner
stinger212 stebrunner
Posted
Stebrunner,
Greetings and hopefully U doing better each day. Had my PAE done in Virginia by Dr Bagla about a month ago and other than dealing with UTIs and antibiotics, doing well.
My point: MEDICARE fully covered my PAE - not a penny out of my pocket!! Recommend you circle the wagons around Blue Cross again and tell them unequivocally that PAE is an FDA approved medical procedure that is covered by MEDICARE. Don't take No for an answer ...
I have also read same from other comrades in this Forum that PAE is fully covered by MEDICARE.
Trust but verify My Friend!!! Stay well...cheers
nealpros stinger212
Posted
I'm not sure what the current situation is, but a year an a half ago, the PAE was covered by MEDICARE IF you were in an approved study. Some medical centers erroneously used the code for those in the study for those NOT in the study. In those cases, the bills were paid, but people, including some doctors, got fired over it.
Has anyone verified WITH MEDICARE that the PAE IS FDA APPROVED AND COVERED BY MEDICARE?
Neal
joe74831 stebrunner
Posted
Of course the bills that the hospital, and Doctors turned in were astronomical so I still woulnd up paying 2500 out of pocket but it saved me about $4000.
Also I did not have anywhere nearly as bad of symptoms as you did.
Hope that helps.
Joe
jjjj57989 stinger212
Posted
michaelmike jjjj57989
Posted
I had my PAE done at Dr Bagla's office 3 1/2 weeks ago and the billing already came through from Medicare, and it does come out to about $2300 , if you only have part A and B .
Camster stinger212
Posted
Stinger, you are right. PAE is covered by Medicare and to my knowledge has been for the last several years that I have researched it calling offices. Dr. Rotimi Johnson at St. Louis University challenged Medicare to pay for this procedure some time ago because he does all sorts of embolization procedures in other parts of the body and it is paid for. Medicare agreed to pay. But I don't think it is officially approved by the FDA. It is still in Phase 3 studies. So private insurances may or may not pay. Some insurances will pay because globally it is cheaper than TURP with less complications. It is a weird twist here. Medicare will pay but some insurance companies will not pay. But to the best of my knowledge, PAE is not FDA approved. There are still clinical studies being run. Northwestern University is still running their clinical study. Dr. Bagla told me that he had a plan to run a clinical study this year in collaboration with Dr. Isaacson.
Lawrence06345 michaelmike
Posted
Michaelmike,
Is that $ 2300 out of pocket if you have BOTH parts A & B, or just part A?
Tx,
Lawrence06345
jimjames stebrunner
Posted
Jim
stebrunner joe74831
Posted
Hi, Joe,
Thanks for your information. I will be appealing their decision. It's good to know that a Blue Cross company did cover it.
Stebrunner
stebrunner jimjames
Posted
Hi, Jim,
They did place the Foley for 7 days, and it's out now. I'm still battling a nasty UTI, and it's making CIC difficult. I'm hoping this will improve soon. I think my prostate is still inflamed from the PAE, too, and it should be settling down this next week. I'll keep you posted.
Thanks again for all the info you share on this web site. It's been helpful when dealing with my uro's staff. When they placed the Foley last week, I insisted that they use a FR 14 with a coude tip. The PA was reluctant, but went ahead with my request. She was quite surprised at how easily it went in! The FR 14 also made my week with the Foley much more comfortable, because of its flexibility.
Stebrunner
jimjames stebrunner
Posted
Hopefully when things clear up you will be able to go back to CIC. If for some reason that doesn't work out in a reasonable period of time, consider a suprapubic catheter instead of a Foley. A subrapubic is a fairly simple procedure that inserts a tube through your belly to drain the bladder. It entirely circumvents the urethra giving it time to heal. It also does away with insertion problems due to a large prostate because it doesn't go near the prostate. You would want one with a valve that you can turn on and off so you would still be able to exercise your bladder muscles. Once things heal up to the point where you can do CIC, then the subrapubic is easily removed. Not saying you need it, but if the choice was strictly between a Foley longer term and a subrapubic, I would go with the subrapubic. No tube in the urethra and therefore more freedom.
Jim
stebrunner jimjames
Posted
Jim,
Today I'm suddenly CICing much easier. My UTI must be clearing up. Have a question, though. Just did CIC, and it was the easiest it's been in 2 weeks. My urine was clear. However, when I pulled the catheter out, there was some purple mucus-looking stuff on the end. I took some toilet paper, and wiped it off the catheter--the stuff was on the outside of the catheter. Any idea of what it could be? Something from my urethra? My bladder?
Stebrunner
jimjames stebrunner
Posted
I'm guessing the mucus might be some sort of sediment from your bladder possibly related to your uti, but it's just a guess. You might want to talk to your urologist about a bladder irrigation which is really quite simple and in fact I have done it myself. Essentially you just squirt about 50cc of sterile water, sterile saline, or some other antimicrobial solution into your bladder through the catheter after emptying your bladder. You hold it in for a few minutes and then cath it out. Some people leave it in until the next time they need to cath. To get the solution in I use a sterile syringe barrel without the needle. You can find them online very cheap. The tip of the syringe fits perfectly into the plastic top of the catheter.
Jim
stebrunner jimjames
Posted
Hi, Jim,
The mucus stuff has not appeared again, but I will call my uro's office if it does. I'm now about 3 1/2 weeks out from my PAE. My UTI has cleared enough that CIC is more comfortable--still slower than I'd like--but doable. My CIC times are about 1/2 of what they were last week.
In the past couple of days, I've been peeing weak streams more and more, and that has been very encouraging. My natural voids are increasing as well--I had one of 90 ml yesterday--the largest since before my AUR last December.
My bladder is doing a good job of telling when I need to urinate. However, after I've done a natural void, my bladder feels like it's empty. I go ahead and CIC and empty the rest out. I'm wondering if there's a way to train my body to tell me if my bladder is empty. Did you have this problem when you had your AUR? Will I always have to CIC to find out if I've completely emptied my bladder?
Stebrunner
michaelmike Lawrence06345
Posted
that is $2300 out of pocket, and I have parts A and B. but no supplemental insurance ("Medigap"
jimjames stebrunner
Posted
Sorry on the late reply.
Before I rehabbed my bladder, I knew it wasn't empty, and that was pretty much all the time.
Now that it is rehabbed, not as easy to tell by "feel". So, like yourself, I would naturally void, and then perform CIC and sometimes fluid would come out, sometimes not. But over time, you begin to correlate things.
For example, if every morning after your natural void, you drain 40cc with CIC, then after a point you don't have to CIC every morning, because you know it's empty enough. Conversly, if you keep draining 500cc every morning, then you know you have to CIC.
At this point, I pretty much 'know' by a combination of feel and correlation, and only hardly every double check my feelings with CIC. But for some time, I would double check things with CIC but again, after a certain point I could pretty much know how much would (or would not) come out.
Jim