Another PAE Success Story!

Sorry, I don't know if I had a median lobe. I was told my prostate was about 62 grams, more than twice the normal size.

Hi burninglove - I am having PAE at UNC next week. Did you have lasting side effects from PAE? I want to be armed with knowledge beforehand. Thanks. Neil

None!

Neal

Google "Complications After Prostate Artery Embolization" look for Pdf titled 

"Complications After Surgery: Spectrum - GEST 2015"

from University of Sao Paulo Medical School

Thanks andreze - there is now a GEST 2016 pdf available. Neil

Yes, when you open that pdf it actually says GEST 2016 USA, so far the best info on potential complications I found

Hi Neal,

Well my turn is coming in a few days at UNC. I will start stool softeners as you advise a few days before. Are there any other tips you can give me for surviving the first night? I am really scared but even more scared about what awaits me if the PAE fails to shrink my 300gm prostate. It is a tough situation to be in but I admire all you guys for educating me about PAE and giving me courage to face it next Tuesday. Dr. Isaacson is a real treasure for sure. Thanks. Neil

I took Tramadol and advil the first 2 days and I was comfortable, it realy is not that bad. Stole softner is a good idea.

Good luck to you!

I wish you a Lot of Success!...GOOD LUCK!....

Thanks guys - I will start a new thread when I get back to document my experience and progress. It will be nice to finally be on the other side and help others. Neil

It's scary; any surgery is. I believe you will find it no worse than a tooth filling (with anesthesia ). Try to take it easy for a few days. Have a bottle with you for long car trips. You won't be passing many rest areas for the first couple of days.

Seriously, I would recommend staying in Chaple Hill 2 or 3 days past the procedure, and you will feel like you are sitting on a billiard ball for a few days, so if you can, bring one of those doughnut shaped pillows, it might be useful, but don't sweat it. It really is a very benign procedure, particularly compared to the horror stories you read on this site for the other procedures. Let us know how it goes.

Neal

I know we all don't experience the same symptoms but I did not have the feeling of "sitting on a billiard ball for a few days" 

About 3 hours after the surgery I felt discomfort and pain around my anal area, I called the doctor and he prescribed Tramadol which I have taken in the past for other pain. Pain went away. 

The urge to urinate every hour, however lasted for 3 days. I did not have burning sensation as I have heard from others, but it felt funny when I urinated, I can't explain it but it just felt funny, not burning or painful.

?I am a chicken when it comes to any procedure and have a very low pain threshold, my wife always makes fun of me. I had 2 hernia surgeries and recovery time, pain/discomfort was a lot WORSE than the PAE.

I am now coming up on 4 weeks after the procedure.  Dr. Bagla perscribed Ibuprofen, steroids, and a urinary inflammation reducer (don't remember the name).  In addition, I remained on my urinary medication (uroxitrol).  My first 24 hours were very difficult.  I had to pee every 15 minutes.  The night improved to once an hour.  The symptoms dissapated very quickly.  Day 2 was much better and day 3 I felt mostly normal again.  I was back at work again on day 4.  Dr. Bagla did the procedure through the femoral artery.  The only residual issues I am having is with the closure of the artery.  I'm not sure why, but I have some irritation in the groin area.  Dr. Bagla performed a ultrasound and all is fine, but when I sit it feels like I am being pinched at the closure site.  It has gotten better, and hopefully will go away completely.

All the best for your procedure.  It was one of the best things I have done. 

Thanks Mfar. When you felt the urge to urinate every hour did you try to ignore that urge and hold it in or did you give in to that urge every time no matter how little urine came out? Were you encouraged to drink a lot after the procedure and keep urinating? Thanks.

Thank you vischer. I have the same question about peeing for you that I just sent to Mfar. Thanks for your good wishes. Dr. Isaacson goes through the hands which will be strange.

My wife is a physician and she advised me to drink more. I probably drank a little more than normal. When the urge came, I went, I didn't try to hold it and I don't think I could have for more than 10-15 minutes anyway. 2nd night, when I was watching TV, I got tired of trips to the bathroom, so, I got a plastic water bottle and used it as I was sitting on the sofa, a bit distracting for my wife 

You are going to be just fine and so happy once it is done, just ask for some kind of pain killer like Hydrocodone, etc. It probably is a good idea if you could spend couple of nights before returning to Canada specially if you are driving as the urge to pee is strong and can't be ignored.

I am now approaching day 14 and it is just getting better, stronger flow and sleeping through the night.

 

Would large TRI-LOBE Prostate Urethra Obstruction and/or very large Retentiopn of Urine in Bladder, ~450ml, prevent doing a PAE?.....Please Advise ASAP.....THANKS.....

Thanks Mfar - I wonder if the pain and discomfort will be amplified for me because of my 300gm prostate caused by all that tissue dying? I will be flying from Canada which takes about 2 hours, We are staying in a hotel after Tuesday until Sunday. I look forward to being on the other side and helping others.

Best of luck to you, Neil3149! My Dad will be having PAE done by Dr. Issacson on 8/17. We are flying out on 8/19, per their instructions, but now I am questioning that. It will be a cross country flight to CA, and it sounds like he might still be in a lot of discomfort and have urgency to urinate (which is difficult on a plane)! I would love to hear your post-procedure assessment, to know if I should try to change our flight.

Thanks for the good wishes. 8/17 was my original date but I had to move it up a week!  Dr. Isaacson did think it was a good idea for us to stay through Sunday. Our flight is under 2 hours probably half yours. You may want to consider extending your stay to be on the safe side. I am not taking any communication devices with me but the hotel probably has internet so I will try to give an early report. All the best to all of us.

I agree that everyone is different. I'll bet that the pain on urination came from a catheter that they used. Dr. Isaacson used a bottle. No pain on urination.

Neal

I would definitely wait for about 4 days at least. You will be peeing at least every hour during the day post op at 2 days, and that's hard to do on a plane! Imagine one of those situations where you end up in a "holding pattern" for a couple of hours, or are waiting for a gate to disembark. It makes me want to go pee just thinking about it.

Neal

Hi Neal,

I leave Sunday - any last words of advise? How long do you think the urgency will last after the procedure on Tuesday? I guess we wouldn't be doing much sightseeing in Chapel Hill. Dr. Isaacson no longer requires us to come in the day before for CT scans. He said that he can now determine all he needs to do on the fly during the day of the procedure using his new cone-CT scan machine. Did you request a rolled up towel for your head to be more comfortable? How are you doing now?

Thanks Neal - Neil

As I remember, got a towel or pillow for my head. In any case, I was reasonably comfortable. I had the PAE early last December, so I don't remember exactly how many days I had the frequent urination, but it was more than 2. Best to be prepared for it. Be sure to tell the airline that you are having this surgical procedure. They will provide free transportation between gates . You won't feel like running, and shouldn't, for a while. It might also help if you have to pee on the plane.

I know that I have made this sound worse than it probably will be, but it is better to be prepared for the worst, and not have it happen, than the opposite.

I am doing ok. The PAE cut my frequency from 8 or so per night to about 4. Dr. Isaacson is still working with me so we can find out exactly what's going on, and fix it. Let us know how it goes.

Neal

Thanks Neal - I sure appreciate it. I was wondering if you have any type of bladder neck obstruction like a median lobe that could be interfering with a full recoery? I also pee 8 times a night now - haven't had a full night's sleep as long as I can remember. But I do not have a median lobe or other type of bladder neck obstruction so it will be interesting to compare notes even with my 300gm prostate.

All the best

Neil

Hi Neil,

As far as I know, I don't have a median lobe causing obstruction. The problem is that I don't know what IS causing the problem. I have just had another MRI done, and am trying to get it to Dr. ISAACSON for him to evaluate, so perhaps he can figure out what the heck the problem is so it can be addressed. I'll let you know what it is when we find it out.

Neal

Do you know if you carry a post void residual  and if it was reduced by the PAE? Also was your prostate size reduced by the PAE?

Yes, I feel like I carry a residual, especially at night. A local urologist measured it at 139, and said that is "ok". As I wrote before, I am still pursuing a solution, and I feel like my outcome from the PAE is unusual. My prostate was reduced by about half, but again, that varies.

Nealpros, Glenn77, as well as, All others on this Blog that desire help...Google - REZUM CPT Code then select Aetna article, then select and read about PAE clinical trials. Aetna is my insurance company and one of the largest in the U.S....Aetna lists in this article a Huge Number of Potential Prostate Treatments, References to the Treatment's effectivenes, CPT Treatment Codes for the SpecificTreatment that might be the most effective for a patient's individual & specfic bladder/prostate problems (you can use these CPT Codes to Determine if your insurance company will pay for the procedure and your co-pay, ie. 20%)......I thought I had reseached most/all of the various treatments and , then, I discover there's a lot more..... I thought PAE might be the best, but in the past few days, I've discovered a lot of Patient Complications, just like the other treatments have.....Right now, I'm at a loss to decide the Specific and Best Treatment....

Randy, I've noticed the same thing recently, there seem to be more reports of complications and unhappy results.......... 

I wish someone with alot of patience would go back 6 months and make a recap of all the PAE results that have been reported..........

I'm also thinking that I might try some of the other meds before trying PAE or any other procedure............

I'm unable to open the link you gave (even if I chang 'hyml' to 'html'  Can you get me the correct link, I'd like to see it.

oh oh - not what I want to hear 3 days before my PAE at UNC!

My reply to you is being held up by the Blog Moderator because I included a Link to Very Good Clinical Trial Results for PAE Patients...Google - REZUM CPT Code then select Aetna article, then select and read about PAE clinical trials...They've experienced 92%-97% Success with very few complications...I hope this conforts you...GOOD LUCK!.....

See the Aetna Report I referenced for Neil...My original reply to you regards your post is being held up by the Blog Moderator for the same reason I mentioned to Neil..The Best Two Treatments seem to be PAE and REZUM having a Lot of Success with the Least Amount of Complications...But Any Complication Worries Me...

Hi Randy - thanks for the post - much appreciated. I do understand that all procedures have risks which is why I am scared out of my wits about the PAE. But in my case the complications from doing nothing are far worst now as I am near AUR and because of the size of my prostate (300gm) my only other option is a prostatectomy with really devastating complications. But I agree with you totally which is why I have spent the past year researching most available procedures and speaking with people. I hate being in this position where I am forced to undergo a medical procedure since I am placing my life in someone else's hands. From reading the GEST-2016 article it does seem that PAE is well-suited to large prostates with no bladder neck obstruction so I hope it will help me avoid a full surgery - time will tell. I like Dr. Isaacson very much as others do here but I am so scareed I would pee in my pants if I could pee! Thanks for your good wishes. I will report back to everyone.Neil

Hi Randy - I went throught the Aetna report - it is really excellent and current - thanks for mentioning it. I wonder if the other insurance companies have produced a similar report for BPH. For guys who still have time it is worthwhile to work your way down the list as everyone is different and some of the more bizarre methods might be just the ticket. On the PAE part I have read all the studies referred to in the report but they bring it all together in a nice summary - it took me months to dig it all out. Thanks again. Neil

Neil, I am also going to see Doc issacson today I visited Dr Bagla yesterday. I too am scared to death but must move forward. I understand you had your PAE Tuesday? Please, how is it going? Are you still here in Chapel Hill.? Would love to speak with you. I see him today at 1:00 pm. Then driving to Asheville to meditate and decide what to do, prostate volume is 150cc its horrible.

Hi j12080 - sorry for the delay. I am still here in Chapel Hill. The procedure went well and was very easy as others have written here. I thank them all very infinite gratitude. I do recommend Dr.Isaacson and his staff very mcuh. His technology is the latest and most advanced. I had no pain or discomfort. The procedure was a technical success as he quickly embolized both sides through my wrist. I do suggest him over Dr. Bagla as Dr. Isaacson had developed an almost pain free procdure with minimal radiation. My prostate was 300gm. My only concern now is that I feel too good! I have had no pain or discomfort or change in symptoms - it is like I never had any prcoedure at all! I will speak with Dr. Isaacson today to see if he wants to do a scan on me. We leave for Canada on Sunday. Do not  be afraid - it is so easy. I do hope it works - if so it will change my life. I am at the hotel computer so will check back later. Thanks to everyone on this forum - now I can help others. I will write more when I return. Neil

Hi j12080 - sorry for the delay. I am still here in Chapel Hill. The procedure went well and was very easy as others have written here. I thank them all very infinite gratitude. I do recommend Dr.Isaacson and his staff very mcuh. His technology is the latest and most advanced. I had no pain or discomfort. The procedure was a technical success as he quickly embolized both sides through my wrist. I do suggest him over Dr. Bagla as Dr. Isaacson had developed an almost pain free procdure with minimal radiation. My prostate was 300gm. My only concern now is that I feel too good! I have had no pain or discomfort or change in symptoms - it is like I never had any prcoedure at all! I will speak with Dr. Isaacson today to see if he wants to do a scan on me. We leave for Canada on Sunday. Do not  be afraid - it is so easy. I do hope it works - if so it will change my life. I am at the hotel computer so will check back later. Thanks to everyone on this forum - now I can help others. I will write more when I return. Neil

Neil,

I understand you have enlarged median lobe, has this came up in your discussion/procedure you just had how doctor will handle this, Bagla claims he can embolize the median lobe separately but I am not sure whether this was ever done?? if you have a chance ask Dr.Isaacson if he has done this ever or if it's even feasible, he turned me down and referred me to Bagla after reviewing my info, but never stated why, I sent him few questions, maybe he didn't want to answer them??

Andrew

So happy to hear your report, Neil! My Dad and I are headed to UNC next week! Do you think you would have felt OK to fly 2 days post-procedure?

Thanks - yes I could have even flown home 2 hours after the procedure! I am very surprised that there has not been any disccomfort at all - I wrote to Dr. Isaacson and asked him why and he just thought it was good news so I do hope it is working. My procedure wnet smoothly and was a technical success. Make sure your father asks for the radial wrist approach rather than the femoral artery if possible - there are NO consequences to it at all. Good luck.

Thanks Andrew - I do not have a median lobe which has been my saving grace with my 300gm prostate. Your question is an interesting one and I would keep asking him - he is always good about responding. But Dr. Bagla is also one of the most respected IRs who perform so I would also have confidence with him if he says he can embolize the median lobe - it is after all just another living part of the prostate which can have its blood supplt cut off. Good luck to you.

Congratulations on the success of your PAE!......Please keep us informed of any complications and your recovery progress.......FYI - Based on your suggestion I called Dr. Isaacson and Baglia early this week. Dr. Isaacson called back and after hearing my systoms, etc. stated I was not a good candidate for a PAE, but I would be for a REZUM..Both PAE's and REZUM's have the highest rate of success per clinical trial reports...GOOD LUCK!.....

Well Neil, that could and should be great news. First and most important, this procedure is based around the therory of gland atrophy from the lack of blood. There is no way to atrophy quickly as the massive enlarged area has to die and that takes time. My dilemma now that I have met face to face with both of these young men and I really like and respect them both. They are very respectful of each other.

We left UNC yesterday and drove toward Asheville nc. We stopped in Marion NC  to spend the night at a Hampton Inn. Unfortunately, at 6:30, my wife triped over a slanted curb in the parking lot and broke her leg. So, we spent today dealing with that and have decided to immediately drive now back to Dallas. I will now have to postpone my PAE until October. It will allow me to follow your progress until then. I hope you provide a thread update at least 2 or 3 times a week on the steps and characteristics of your progress. Like a diary entry! No one has given us a real blow by blow progress report like that. Remember how scared you were before? I think a diary update would really help. Good luck. I would bet you get 35 percent size reduction and 50 percent symptom improvement over time.

i

Hi Neil,

I'm happy for your good news. I know that you feel good, but bear in mind that several others, in the past have felt wonderful after a PAE, and have immediately resumed vigorous physical activity only to find themselves in a great deal of pain. Please take it very easy for a few days even if you feel like you can do more.

Neal

I am so sorry to hear about your wife's accident. Last summer my wife tripped over some wire and also broke her ankle. She had a titanium plate and many screws put in her foot. She couldn't put weight on her foot for 5 months and was in therapy for a long time. But now a year later she is as good as new. Still it was shocking how fast accidents occur and we wish you all the best. I tell my wife how I waited for her during her 2 hour surgery and now she waited for me for my 2 hour procedure. I hope you can figure out your PAE ok. I absolutely will start a new thread on my progress when I get home. I have had zero after-effects from the PAE Tuesday and in fact spent the morning touring Chapel Hill. I also have had no side effects from the drugs which run out on Monday. My peeing has improved but the prednisone and nsaids I am taking will help that so the real test is if I go back into AUR and need to self-cath next week. I will also write more about the procedure itself and my own BPH history next week. Good luck to you and your wife - my heart goes out to you for such a shock. Neil

Thanks Neal for this advice  and thanky you for helping me prepare for this procedure. Your stories and guidance were what lead to my decision to come here and I am glad I did. I picked up my CDs of the procedure yesterday and downloaded Dr. Isaacson's report of my procedure. I tried to stay awake during the procedure to watch it on the monitors - just fascinating how he has combined so many new technologies to create a painfree inocuous procedure to solve such a debilitating disease - I sure hope it works. Please keep us up to date on your own situation - do you have any thoughts yet on why it has yet to work for you? Thanks again. Neil

I'm so glad to hear you're doing well.

Please continue to keep us informed of your progress.

I talked to Dr. Isaacson, and he thinks doing another PAE might be helpful, and we are considering it. I'll let you know when we decide. It sure would be great if it were approved for MEDICARE. Does anyone on here have any information on when that mighthe happen?

Neal

Hi Neal - I did ask about Medicare this week and was told that it is a long way off before being approved. The procedure cost me $6450. which is up quite a bit. Did Dr. Isaacson give you any reason why he thinks your PAE did not take? Did your MRI show any clues like partial necrosis of parts of the prostate not involved in BPH? I am post PAE 5 days now and still have zero side effects from the procedure or the drugs. I also have no improvement in my BPH symptoms so I wonder if it will work for me. How long should I wait before resuming physical/sexual activity? Good luck. Neil

Dr Isaacson said that I had more arteries than normal feeding blood to my prostate, and that it had not decreased in size as much as it should have, so he feels that if he does more arteries, it is likely to cause more shrinkage, and a smaller prostate.

Don't be concerned about the lack of improvement in your symptoms yet. Think about the last time you cut yourself. It takes a while for things to heal, and shrinkage to go away. Same for the physical activity, and sex. Give them a couple of weeks or so, then start slowly. The symptom improvement may take 1 to 6 months.

Neal

Thanks Neal. I was wondering if you considered getting a second opinion about your case from another PAE expert like Dr. Bagla or Dr. Bahtia? They may provide a different perspective on your outcome (or lack of ) based on their own experiences. We just got home now after a violent turbulent flight and tons of walking and carrying things yet I feel fine with no adverse pain anywhere. It is just like I never went away - I pee with the same slow stream. My meds end tomorrow and I sure pray I don't go into retention again. Anyway, as you say time will tell but I may be in the same boat as you. When will you decide what to do? Neil

Neil - Checking your posts every day and hoping that you have good success.  Please continue to keep us updated on your progress.  Mark

It was good advice, randy 85492, to Google those data.  Mentioned in that article is the following: "but there has been ongoing development of 2 alternative agents, NX-1207 and PRX-302.  Both have shown good safety profiles and early effectiveness in phase II studies." I'm not familiar with PRX-302, but I am familiar with NX-1207.  It's an intraprostatic injection that's being developed with great promise, not only for BPH, but also for prostate cancer.  The company is NYMOX pharmaceuticals, and they're worth following.

 

I am considering checking in with Dr. Bagla. I will be traveling near there in a couple of months. We are also dealing with some health issues with my wife, so things are somewhat up in the air right now. I'll let you know as things progress. Thanks for your concern and advice. Let me know how you are doing.

Neal

Thanks Mark - I hope start a new thread tonight documenting my experiences. Thanks for your good wishes. Neil

Neil, Now that you are home, how is your journey going? Have you noticed any changes?

 

Thanks for asking - it is 3 weeks and 2 days now since my PAE but I have not seen any change whatsoever - it is like I never had the PAE. There were no adverse effects from the procedure and no improvement in my retention and nocturia at all. So this is disappointing so far. I have arranged for a 3T MRI at UNC with Dr. Isaacson for Sept. 12 toimage the effects of the PAE and determine if it is working and if not why so hoepfully from that I can make some decisions about what to do next. I still sekf-cath before bedtime and take out about 300ml. Take care. Neil

I'm sorry to hear you've had no improvement...I know that must be both frustrating and disappointing....Hopefully, Dr. Isaacson can determine something that might help you...I'm praying for you...