PAE at UCLA April 2019 update

Posted , 10 users are following.

My procedure has been a great success! To be realistic, I am not peeing like a teenager, but my symptoms are so much better than before that I can only thank God ( and the men on this forum ) for my quality of life today!

I just returned from a week long trip in Costa Rica. Travel was always the most difficult for me because of very frequent and very urgent need to pee! I used to spend my trips searching for toilets and long plane flights were miserable if that fasten seat belt sign lit up. This trip was GREAT!

The main difference for me now is that if I need to pee, I can hold it for as long as I need to without extreme urgency. When I get to the restroom PEE COMES OUT! Complete void, I am able to empty my bladder. Before PAE, if I had to hold it for 30 minutes because of plane or traffic or whatever, there would be extreme urgency that would set off a chain reaction for frequent urination and I all I could do was dribble out. This also resulted in 3 complete retentions at 54 years old!

So my 9 month update is wonderful! My vacation travel was so enjoyable without the constant need to pee. Again, no fire-hose here, just reliable and steady and manageable. I still travel with CIC out of fear, but in 9 months , I have not even come close to needing one.

I strongly recommend PAE!

Happy New Year to all!

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  • Posted

    Did you have prostatitis after the pae?

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    • Posted

      I will say something about prostatitis that is somewhat controversial... It is over diagnosed, and over medicated! I was diagnosed with it many times, and given Antibiotics. Not specifically after the PAE procedure, but over many years. I believe it is all HOGWASH! I cured my prostatitis with medi-T-ation , not medication! Urologists prescribe Cipro even if thay can't prove prostatitis.

      Anyway, this is a whole topic of its own. Here is a quote from a urologist at Northwestern Medical:

      Prostatitis is a grab-bag diagnosis; a catch-all where a variety of symptoms are often chucked together when doctors “don’t know what is going on,” says Flury. Pain in the testicles? Prostatitis. Pain in the penis? Prostatitis. Pain in the bladder or rectum? You guessed it. Burning when you urinate or ejaculate? Prostatitis. It’s like the diagnostic Island of Misfit Toys from the classic TV special, “Rudolph the Red-Nosed Reindeer.”

      And yet: “Bacterial prostatitis itself is actually very rare,” says Flury.

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    • Posted

      I think there might be something to what you say. For years my uro told me that my prostate was about 40 grams based on a DRE. But I frequently had blood in my semen, frequent perineum pain and flow issues. Because of the blood and perineum pain, I thought I probably had prostatitis although no uro actually said this. Then a TAUS measured 145 grams and a TRUS 100 grams. For 17 months now I have been on dutasteride and I can't remember having any blood in my semen and only very, very infrequent perineum pain. In hindsight it would seem that it was just the large prostate (probably 120 grams or larger prior to the dutasteride), that was the issue. An 3T MRI nine months after starting dutasteride yielded a prostate size of 100 grams.

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  • Posted

    nice to read such a positive report! glad

    for you!

    myself I had a procedure done in October 2017 and it has been a success as well. All you describe was very familiar for me as well. I really appreciate and enjoy this regained quality of life.

    Happy New Year!

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    • Posted

      Happy to hear good results as well! Without this forum I would have never known about PAE, certainly not from my Urologist!

      We see a lot of poor results posted on the forum , but I think the positive results fade away into happy normal lives! And the poor results keep posting and searching for answers.

      I am enrolled in a 3 year study at UCLA, I get another CTSCAN in April for my 1 year check up. I am happy to do it!

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  • Posted

    how long did OP take?

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    • Posted

      Bobcats

      I decided a couple of years ago to have a PAE, and spoke to Dr. McWilliams about it. I’ve been waiting for Blue Cross to cover it, but I cannot wait any longer, because urine backing up into one kidney has now caused hydronephrosis – which would soon lead to loss of kidney function, if my large prostate is not reduced soon.

      I’ve been planning to fly to VA in a few weeks and have Dr. Bagla do it for half the cost of UCLA, but I’m worried about getting stuck back there with a difficult recovery and the potential problems flying home. (I’m 75 years old with a 80 to 85 cc prostate, per MRI.) My niece can fly to VA with me, but still … I have never self-cathetered, and don’t expect that would go well, for me, based on my cystoscopy experience. After reading your posts, I’m seriously thinking of cancelling VA and opting for UCLA.

      In an earlier post, you mentioned submitting the bill to your insurance company. Do you mind sharing how that went, and which company. (I have group coverage through the PWGA). Also, did UCLA end up lowering the fee at all?

      You mentioned that Dr. McWilliams requires a CT scan first. Is that a pelvic and/or abdominal scan? (I recently had that done, to diagnose my kidney problem.)

      You wrote that you have no median lobe issue, but I do. Did that issue ever come up when you spoke to Dr. McWilliams?

      You mentioned 3 years of post-op care with Dr. McWilliams. What does that entail?

      Thank you for any advice you can offer.

      steveyj

      image

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    • Posted

      Hi Steve,

      I believe at your age Medicare would cover a big portion. At my age, 54, I had to cover with my own insurance and out of pocket. I have Healthnet PPO. The bill was outrageous! More than $150,000. that is not a typo! $150K .

      Dr Mcwilliams has nothing to do with billing, but his staff is on the side of the patient. My out of pocket ended up to be about $7500. Thank god I have the means, because it was the best money I ever spent.

      CT scan is kind of like an MRI, but the machine is a donut shape. You lie down and pass you through a few times , there is some kind of contrast fluid that is injected into your veins , there is a strange heat sensation, but nothing to extreme. I am a big nervous nellie with all docs and medicine and It really was no big deal.

      I suggest to go see Dr. McWilliams, he is a saint in my opinion! He is Human, which I find refreshing when most docs are robots void of emotion!

      The 3 year study is for him to test for long term durability. So far its just been 1 office visit and coming up is another scan. I can only assume the scan is to compare 12 months before and after.

      Good luck to you and say hi to Doc for me!

      P.S. feel free to PM me if you want my phone number to discuss further.

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    • Posted

      Hi Steve:

      I assume you have discussed the options with your urologist. I would imagine he/she did not offer up PAE as an option since it is performed by radiologists and not urologists. However, given that you already have hydronephrosis which as you say will soon lead to loss of kidney function, are you sure that you want to have a PAE? I have not had one, but my understanding is that it can take some weeks/months for the prostate size to be reduced. Also, I believe that most posters here do not recommend PAE for a median lobe (PAE is apparently not very effective when there is a median lobe issue). Have you actually spoken with a doctor who performs PAE about your current situation?

      Given your current circumstance, I would recommend that you really research a procedure that will provide more of an immediate solution to your BPH (i.e. button/bipolar TURP, HOLEP). Yes, you will most likely have retrograde ejaculation and there are some other risks, but you need to weigh those small percentage risks against the high probability that you might lose kidney function soon.

      Hopefully, other posters will chime in with their thoughts.

      Best of luck.

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    • Posted

      Bobcats

      Thank you so much for all that great information. Much appreciated! I've been in touch with Dr. McWilliams today. He told me that, at UCLA, the all-included cost of the PAE is 19k, for those who pay out of pocket. I will ask him about the 150k charges!

      I will get back in touch with you after I see where things go. Thank you,

      steveyj

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    • Posted

      rdemyan

      About the median lobe, I asked Dr. McWilliams about that and he said that PAE does work on patients with a large median lobe. One of the other leading PAE docs told me the same thing. And there is a research study supporting this claim on pubmed -- despite the widely held opinion here that PAE won't work if you have a large median lobe.

      As for hydronephrosis, you bring up a great point. No one can tell me exactly how much time I have to shrink the prostate, before losing kidney function. Right now, my kidney function is normal and my creatinine levels are good (and holding steady.) I'm relying on my nephrologist, who said that I can take the time to try the PAE now and then, if need be, have another procedure in a couple of months.

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    • Posted

      steve:

      It sounds like you've thought through these issues. I would like to make one recommendation. Learn to self catheterize to use, if necessary, while you wait for the procedure and even during the recovery period after the procedure. It's not that hard to learn and you can, most likely, learn it in your uro's office. Knowing that you can get the urine out yourself if a bad situation arises can really ease the mind, at least it does for me. While I'm no doctor, it would seem to me that if you can self catheterize then you should be able to substantially mitigate the possibility of further damage to your kidneys. Again, I'm only suggesting you do this if you get in trouble (like waking up at night and being unable to urinate). There's quite a bit of practical knowledge from posters on this site. If you are interested and want information from these guys, start a new post. Best of luck to you.

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    • Posted

      Oh, and with regards to your bad experience with cystoscopy, the self catheters can be significantly smaller in diameter (a quick google search indicates that cystoscopes are typically FR17 or larger). Probably a FR12 or FR14 would work. If you learn in the uros office, they can guide you through what will at first seem like an uncertain situation.

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    • Posted

      +1 on the self-cathing! I am in my third month and it has become as routine as flossing and takes less time. I was very anxious and apprehensive about starting, but my uro hooked me up with a catheter nurse who came to my home and coached me the first time. It was WAY easier than I expected, with NO pain! I almost did a Snoopy Happy Dance when I realized how easy it was, especially after reading several threads on this forum of others having difficulty starting out.

      Medicare pays for all my supplies which are shipped to me every month as well as the catheter nurse, so it's really very convenient to do.

      I am hoping to rehab my distended bladder and avoid any surgical procedure by choosing this option.

      Patrick

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    • Posted

      Well, I've thought about it and checked into it, but that doesn't mean I'm on the best path. There is some risk that the kidney will be seriously impaired before the PAE has time to work -- and it was very savvy of you to point that out.

      Learning to self-cath is a great idea. Thank you for that. I will definitely follow up with my urologist.

      Steve

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    • Posted

      Patrick

      Thank you for your encouragement about learning to self-cath. A lot of my resistance is a mental block. (It sounds like a medieval torture.) But knowing how well it went for you gives me hope!

      Steve

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    • Posted

      arlington

      Thank you for that. It would help me if I could resolve this question, so I can either abandon PAE, or else feel more confident in pursuing it. Can you please share the source of that information about median lobes. Is it from a study?

      Thanks

      steve

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    • Posted

      Steve,

      I know the feeling! I worked myself into a tizzy worrying about self-cathing...but it all went away after the first session and I felt a little silly for all the angst my "mental block" had caused. I must say the home visit from the catheter nurse made all the difference, so see if your uro can arrange this. Being in the comfort of your own home makes it much easier. The training session was in 3 parts:

      1. Remove the Foley. This alone was worth the price of admission! I had been wearing it for 3 months and having my little buddy back untethered was liberating!
      2. Sit down session. During this part, the nurse explained in layman's terms exactly what Clean Intermittent Catheterization (CIC) is and how it will benefit me, including diagrams. A Q&A session followed where any and all questions and concerns were answered.
      3. First CIC. This is where the rubber meets the road. The nurse joined me in my bathroom and coached me up for my first try. It was a piece of cake!

      So I am in my third month of CIC and have become quite habituated to the routine. Meanwhile, my bladder is being rehabbed, the threat to my kidneys has been halted, and now I have time to research all options for the next step. It may take a year or more, but my goal is to avoid rushing into a surgical procedure with little chance of success and living with irreversible side effects, and hopefully regain enough bladder function to urinate on my own without the catheters.

      Research CIC on this forum as an alternative to surgical options as I did and learn from the experiences from those who have chosen CIC .

      Good luck to you going forward.

      Patrick

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    • Posted

      Personal experience, dozens of posts on this website and most importantly, discussions w/ the Dr who performed my PAE, who was very honest and forthcoming and didn't overpromise. I would recommend discussing the PAE with him. Ari Isaacson at UNC. Great guy and he and another Dr have done the most PAEs in the US.

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    • Posted

      Steve:

      I had a very nasty UTI about 15 months ago that caused some ugly events. Afterwards was when I decided to learn how to self-cath so that I could attempt to get urine out on my own. However, since I had a UTI and since self-cathing can cause UTIs (especially if the catheter is touched by human hands before insertion), I decided that I wanted to first research catheters. I chose a catheter that is sealed, lubricated by the manufacturer and sterile. All I had to do was open it and insert it in the prescribed manner. No lubricating or touching the part of the catheter that enters my body. This turned out to be important because when I arrived at the urologist's office, with catheter in hand, the teaching nurse first wanted me to use a red rubber catheter. These rubber catheters have to be lubricated/sterilized by hand. I told her I had brought my own instantly ready to use catheter and we used it instead of the red rubber catheter.

      So, before you go to the uro's office you might want to give some thought about the catheter you want to use. I wouldn't assume that they will have that catheter available. If you bring your own, take more than one just in case.

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    • Posted

      UGH...that sounds like Nurse Ratchet with the red rubber hose!

      FWIW, my catheter nurse is a male and knows the parts better than a female nurse could. He also brought an armful of sample catheters, including my choice of SpeediCath FR 14, a hydrophilic catheter, sealed, lubricated and sterile, ready to use. I learned and quickly adapted to JimJames' "nose dive" technique which I learned on this forum which allows an easy insertion without touching the shaft of the catheter that enters the penis, holding it by the funnel end. Piece of cake.

      FWIW, I have tried several different brands of catheters and have made the SpeediCath my go-to choice. However, we are all different and I would recommend trying several types and sizes to see what fits best for you.

      Patrick

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    • Posted

      Hi Patrick:

      My advice to Steve was to just use catheters in an emergency situation, so that will be different than every day use, in terms of selecting a catheter. I too have the SpeediCath, which I learned about from this blog. It worked okay during the teaching session and I've used it one other time (so twice in 15 months). For us "break only in an emergency" types there really doesn't seem to be a reason to investigate a large number of catheters. In your case, however, I would see why you would.

      Having said that, I don't know if Steve plans to use catheters more often than just an emergency situation.

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    • Posted

      The $150K is some kind of game the hospital plays with the insurance company. They ask for $150, insurance says $75, They get me to pay $7500, and then it all goes away. My insurance did pay something like $75-80K to UCLA, which is no joke! UCLA is a huge research hospital and they have fees on top of fees on top of fees. I don't think the Doc ever saw my bill!! But as I said , I was happy to pay my part and I paid it right away without question.

      I know we are all different but the PAE was a perfect fit for my situation and my body and I had results within a week, not months. I am lucky, this I know because I have read on this forum where the procedure did not help at all for some men. I only pray it lasts, it would be very hard to back to my old life.

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    • Posted

      i get it. All of us here have different circumstances and I expect there are some that haven't considered CIC as a viable option to invasive surgical procedures, whether temporary or long-term. I'm hoping my use of CIC is temporary but realize it may prove to be long-term.

      Patrick

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    • Posted

      This is a crazy week for me, but as soon as I can arrange this fun little tutorial, I will.

      I think I fall into the "Break-Glass-In-Case-Of-Emergency" group. I definitely need to learn this skill, but I hope I won't need to do it daily, as you are doing.

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    • Posted

      I totally agree about Dr. Isaacson. He is an outstanding pioneer of PAE. I've exchanged emails with him -- (and with eight other interventional radiologists who perform PAE, including Dr. Carnevale.) Dr. Isaacson was very helpful, but he didn't mention anything about enlarged median lobes. Did he tell you that PAE is far less effective in those cases?

      When you say personal experience, does that mean your own PAE had limited success, attributed to an enlarged median lobe?

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    • Posted

      Yes to both questions:

      • he told me 80% success rate for most but only 60% for enlarged median lobes; then, after mapping my "arteries/blood vessels" just before surgery, he told me it was more like 50/50 because of what he saw. Ultimately, I did not see any improvement; however, I think, due to minimal risks, it's worth a shot for those who don't have an enlarged median lobe.
      • did you tell him that you have an enlarged median lobe?

      Best of luck!

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    • Posted

      I appreciate that a number of posters on this site have been doing CIC for quite a long time. However, doesn't the prostate keep growing during this time? At some point isn't there the potential that the urethra might get so restricted that it becomes increasingly difficult to get the catheter in. I don't know the answer. Perhaps, a semi-rigid catheter can pretty much always push the tissue out of the way. It would be interesting to know if any of the individuals, who self catheterize, have, at some point, had a problem getting the catheter in.

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    • Posted

      I had a problem getting what I thought was the best catheter I used in - and had to switch. it was actually too rigid and didn't have a coude tip. You just need to experiment with size and coude tip and rigidity.

      I would like to get back to the one that was so good and so discreet: coloplast speedicath male compact.

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    • Posted

      Not sure about the prostate continuing to grow, but I guess that's possible and maybe more than likely.

      I've only been self-cathing since November 2019, but have heard of some that have done it for years without a problem. I use the SpeediCath FR14 straight tip as prescribed by my uro and it works well for me. I tried the smaller FR12 but found the 14 easier to insert. I have also used the SpeediCath compact and really like it and would use it 100% but it is pricey and not covered my Medicare as my others are. My understanding is you have to have a history of UTIs for Medicare to cover these as they are a "sterile kit". shrugs shoulders

      And yes, there are some who have problems with self-cathing. I read 50+ pages of over 5,000 comments by those who were sharing their experiences before I began. Many of these comments made me very apprehensive about CIC and I felt very fortunate when I had no problem from the beginning. You can research threads about CIC on this forum for more info.

      Patrick

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    • Posted

      +1 on the SpeediCath compact! Too bad they're so costly (@$6/each) and not covered by Medicare unless you have a history of UTIs. I would definitely pay out of pocket to use these for travel as they are very discreet and fit in your pocket, unlike the 20" regular caths which are like carrying around an arrow.

      Patrick

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    • Posted

      That's very useful firsthand information. And it's discouraging to someone like me. I've had my heart set on PAE, but ...

      60% odds -- that definitely gives me pause. Thank you so much for bringing this to my attention.

      If any guys on here have had a successful PAE despite an enlarged median lobe, maybe they'll speak up.

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    • Posted

      i was in the same situation and changed to Rezum / Holep. The uro warned me that there is a 33% chance for RE. I took the chance and he managed it well. It probably just depends of how the growth is and how the nerves run. I had a large median lobe and it worked out perfectly well for me. Good luck to you!

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    • Posted

      You bet! I researched this thread and had a list of questions for my uro who was impressed with my research, list of questions, and positive mental attitude which made his job easier to give me the bad news of my failed urodynamics testing. He agreed that CIC was the best option for me to rehab my bladder before considering other procedures.

      Patrick

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    • Posted

      Thank you for all the insights you've given me. One more question. How large was your prostate at the time of your PAE? And was that a factor in the disappointing outcome?

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    • Posted

      1. I was not told that the size was a factor. I was told that the success rate was much lower with an enlarged median lobe.

      I should point out that my procedure was done almost 4 1/2 years ago. I would suggest that you contact Dr. Isaacson at UNC and discuss whether there have been substantial improvements in the success rte when there is an enlarged median lobe. Who knows? Maybe the odds are better now. There is a learning curve.

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