Has anyone out there had a "Prostate Artery Embolization??

I had the PAE surgery in Alexandria, Virginia on September 10th, 2014 by one of the pioneers of this procedure.  Today is friday November 14th, 2014 some 2+ months later and I have gotten NO improvement whatsoever.  Iam still getting up anywhere from 4 to 5 times a night the same as before the procedure.  The flow is a little stronger but nothing to write home about.  So basically Iam still frustrated and trying to stay positive.  The Interventional Radiologist told me it would take anywhere from 30 days to 6 months to see positive results.  I guess we'll see.  Please feel free to ask any questions but as of today I would NOT recommend it.

Sorry results aren't coming in yet. Has your radiologist done an imaging study since your PAE to see if your prostate has gotten any smaller? Other than the frequency you mention, what other symptons did you have prior to the PAE? What about retention, for example. Was that every a problem or was it more frequency.

Hi Chuck:  I was wondering if your finally had good results from the PAE procedure done in September, 2014.  I am considering having the procedure and would appreciate your feedback.  Thanks, Lenny 

Lenny, I'm 7 months out from my PAE which I had in Sydney Australia. 

I had a scan 2 weeks ago and my prostate has shrunk by a third from 120 cc to 80 cc. From day 5 I noticed a big improvement in urine flow. I only get up two times a night,down from six. 

I thought things might plateau after a while but things just get better and better. Sexual function has improved dramatically now as well....I'm on the verge of giving up the viagra as I almost don't need it anymore. 

I had no side effects whatsoever. 

My interventional radiologist was Dr Glen Schlapoff of Liverpool hospital in Sydney. 

Any Australian readers can private message me for contact details for Dr Schlapoff. 

Thanks so much for your reply.  It is very helpful.  

 

Thank you 

Hi Caringbah

I'm in the initial stages of having a PAE with Dr Schlaphof - had MRI etc and will see the Doc next week.

I'm up up to 6 times per night.

Is everything still ok with you?

Cheers

Sharebare

Hi Caringbah,

I've been "managing" the urinary issues for over 10 years now, turned for much worse recently with the uro advising TURP as the only option.

I am in Aus (Melbourne). 

I am on flowmaxtra with some imporvment which buys me some time.

I am searching the forums for any medicos in Melbourne that would perform PAE under Medicare. 

Was your surgery covered by Medicare ?

Cheers

Rama

 

Hi Rama, ...typical Urologist, I'm disgusted with them. He's either ignorant or deceptive...either is no good.

I live in Brisbane but had my PAE done in Sydney at Liverpool hospital by Dr Glen Schlapoff.

It was done at no cost to me under Medicare. As far as I know, Sydney and Brisbane are the only places in Oz that are doing PAE.

Please private message me for contact details for Dr Schlapoff .

Hi Sharebare, 

i just noticed your comment now.

Yes everything is great. Still getting better if anything. I'm in the lucky 30% who report improved sexual function. 

The greatest thing about PAE and restored urinary function is that I just don't think about peeing anymore whereas before it used to dominate my thoughts. 

Hi there its Chris I contacted you some time ago on here  regarding a horrible experience with anaphalctic shock whilst having a CT scan and MRI with Doctor Schlappoff was wondering how your PAE is going any side effects or problems ? I contacted Dr Schlapoff again asking if there is anything I can do due with regard my allergy to the contrasts so I can have the PAE done he called me and said he can do it under controlled conditions but I  never heard back from him ?? so I just sent him another email to contact me again. Im aware that you are also allergic to the contrasts too and wondered what he did with you regarding this? So I may be able to discuss the same measures with him and also wanted to know how you are going and if all went well with your PAE and any further problems or progressions ? Please let me know thanks so much kind regards

Chris 

Hi Chris, PAE is great....getting better all the time. I'm very happy. 

I knew I was allergic to contrast dye, but the worst reaction I experienced was coming out in a rash. Having said that, I was told I could experience anaphalectic shock at any time in the future. 

Schlapoff gave me a three day course of Prednisone injections plus antihistamines to prevent any reaction. It must have worked because I didn't even get the rash. 

Make sure you have IV prednisone not the tablet form. I had the tablet form for the CT scan and it nearly destroyed my stomach. 

Hope that helps.

Hello Chris, I wanted to ask what kind of reaction you had to the dye? 

I had a PAE done back in Jan of this year at UNC, and I had a terrible reaction to something. The doc gave me the list of meds used but its hard to narrow it down.

About an hour after waking up from the procedure, I broke out in a heck rash from my neck down. The docs gave me several meds to counteract it, but the rash was so bad the skin actually blistered up in several spots. It looked like I had been burned in several places. Its been over 2 months now, and I still have scars from it.

As bad as I wanted the PAE I would never have done it if I had known this could happen. 

The good news is the PAE seems to be slowly working.

thanks joe

Hi I am interested in getting this PAE procedure done ... I live in Melbourne Australia but would go to SYD if I have to. How can I get a contact no. for DR Schlapoff maybe I can arrange an appointment.

Hi Peter, you can call the radiology department at Livetpool Hospital and tell them that you would like to make an appointment with Dr Schlapoff for PAE or else you can private message me and I can give you a number.

 

I'm planning on having it done in 3 weeks. Was your radiologist Bagla?

Hi Joe74831

My name is Fouad. I am 68. I have been suffering from BPH for about 20 years. 20 days ago, 5th of July 2016 I have done PAE procedure at UNC. I would like to how long it took you to feel better concerning BPH symptoms and was there any problem during the first month. Thank you

Hello Fouad, sorry I cant help you much. I am 7 months out from mine, and have actually gotten much worse.  You might check with some of the other guys. I had what appears to be a bad reaction to the beads they used, and my prostate stays in a constant state of inflamation. Which makes it very difficult to pee. I also have sores on my arms,legs and crotch that will not go away. The Doc has told me there is no way to relieve all the symptoms other than a complete prostate removal, since there is no way to remove the beads.

Have you not gotten any results yet?

thanks Joe

Thank you. I still having the inflammation after 3 week of having the procedure. Where did you have it done?

3 weeks is still fairly early, do you still have blood in your semen? Also did you take the prednisone they gave you? Hopefully you will still improve.

I had mine at UNC also.

thanks Joe

Yes I still have blood in my semen though little. I took the steroid medicine for only one week as recommended by doctor Isaacson. As a matter of fact I got little improvement the second week but three days ago I started to have sever difficulties in passing the urine. In your case why don't you see a urologist to treat the inflammation. Did the doctor explain to you why the prostate reacted sensitively to the beads they used in UNC, why it is not possible to reverse the PAE and why they still using the same beads if they were irritating. Have you heard of similar cases ?

Regards

Dr Isaacson has been treating me for it, but unfortunately prednisone is the only option. I am just fishing up a month long taper which started at a very high dosage. But unfortunately it has not helped at all. There are instances of allergic reactions but it apparently is pretty rare.

As far as a urologist goes, Dr Isaacson originally had me set up to go back to UNC to see one he knows there, but decided it really wouldn't do me any good.

It is not reversable because apparently the beads actually go into the veins inside the prostate, and there is no procedure to remove them.

Hang in there, you are still in that time frame where hopefully you will still improve.

You might contact Dr. Isaacson again, and ask his advice. He is very responsive and helpful. You can reach him through his office by phone.

Neal

Hi Joe,

Thanks for your post. Up to now I thought the only bad outcome of PAE is that it wouldn't work and you would only be out some time and expense. But after reading your posts I am leary of going for it.

There have been a number of posters reporting poor outcomes, but yours is by far the worst outcome I have seen.

I had a TUMT, two greenlight lasers and a turp in the past 5 years and still have a 200g prostrate and median lobe protruding into my bladder. I finally pee OK and have a very low PVR, but have occasional heavy dribbles when I get up from the toilet (maybe the median lobe moving from the bladder mouth), and get up 2-3 times a night on average to pee in my bedside urinal. I am taking dutasteride for the last 9 months to keep my prostrate from growing, which has decreased my libido and lessened the intensity of orgasms (but I'll take whatever I can get).

All of my procedures have reported 95% success rates, but I always wind up in the 5%, so I'm probably a good candidate for a PAE reaction as well.

Wow Bob it sounds like you have tried it all. I would never discourage anybody from trying the pae especially with a prostate as large as yours. Mine was only 45 gms lol.  Not sure where I will wind up but its probably not a good outcome.  I keep hoping things will improve but not so far.

Thanks for posting

Joe

Hi Joe,

Thanks for your posts. I seem to be the guy who has the worst outcomes on procedures. After the first greenlight I had two major hematurias, and I never took blood thinners. Apparently the greenlight made me vulnerable to spontaneous bleeding of the prostate and bladder neck.

18 months ofter the first greenlight, the first hematuria prompted the second greenlight. I needed 8 pints of whole blood on that one, and the second prompted the turp 15 months later, and a follow up operation two weeks later, and a second follow up operation scheduled but not needed when the bleeding stopped. I bled frank blood for 30 days and needed 6 pints of whole bloodon the second hematuria. About 4 months ago I was diagnosed with afib but can't take blood thinners, and lymphoma, so the prostate is on the back burner as long as symptoms don't return.

'll go for an ultrasound in the next month or so to measure the prostate and PVR (in Nov 2015 it was 203g and a pvr of 32ml.) If it is growing I'll have to reconsider my options, but if the dutasteride has stopped the growth and the pvr is still good, the dutasteride is my safest option for the forseeable future. At 69 I've used up a bunch of my 9 lives. After what you experienced, I can't see taking a chance on PAE if the dutasteride is working.

Bob

Wow Bob no offense but I thought I was the only guy that had luck like thst lol. You have really been thru the wringer buddy.

You may be making the right decision, have you been reading the posts from  fouad43380 on here? Sounds like he is having a lot of the same issues as myself.

Bob, I would not accept a no-go from anyone on the PAE short of a Dr. who does these proceedures.  I would contact Dr. Bagla of Vascular Institue of Virginia and get another opinion.  Dr. Bagla has done more PAE;s than anyone else in the US and performed my surgery.  I have had fantastic results with absolutely no negative side effects.

Terry

Thanks Terry,

If I have no other options I'll do that. The fact that most people get great results doesnt mean some won't have terrible results. I never heard a doctor discourage me from following their advice because of a small percentage of people with adverse effects.

Medical errors and pharma interactions kill 250,000 + people a year in the US, according to conservative estimates by the US government NIH. Other sources estimate at least 400,000. That's a 911 every 3 to 5 days. That's a statistic that doesn't make the news.

Bob

Dear Bob,

I had the PAE procedue at Hackensack Medical Center in NNJ on June 14,2016 and I'm happy I did. My prostate was 200 in size and the uroligists was talking a 'supraprostalectomy', whatever, which sounded bad. Anyway, the procedure took 5 and a half hours with another 5 yours with the sand bag on the groin area. Released that same night. It's now 60 days since procedure all urilogical areas have improved. My urinary tracking score went from 26 to like 8 in a matter of weeks after PAE. Also, I'm off both Finesteride and Tamsulosin!.

I'm 71 yrs. old, 6' 1' // 198 lbs // and bike a lot/maybe 50 miles a week.

For me, the most bothersome item is retrograde ejaculation buy, the doctor says that'll improve now that I'm off Tamsulosin.

Hi Gary,

    Curious as to why your procedure took so long. My undersatnding is that it normally takes about an hour.

Hi Gary,

Thanks for your post. The Hackensack Medical Center is the nearest location to me offering the PAE. My prostate was 203g. the last time it was checked in Nov., 2015. I don't have symptoms now, but if my prostate continues to grow I would have. Prior to my Turp about 17 months ago it was 313g.

When are you going for another prostate measurement (probably at the 6 month mark?) I would be very interested in how much your prostate has shrunk and if it is expected to start to grow back in time. Maybe this is unknown at present. I believe i read that results lasted at least 3 years, based on current histories.

Did you have a median lobe protruding into the bladder? I do. I don't know if the median lobe is affected by PAE or not.

Who were your doctors at Hackensack? If my prostate continues to grow despite the dutasteride I have been taking for 9 months, PAE is a very likely procedure for me. Thanks for sharing.

Bob

PAEs have had significantly greater success for large prostates without median lobe issues.

I guess the question is whther the median lobe is affected at all by the procedure. It is part of the prostate, does it get a similar shrinkage, or is it unaffected.

Hi Bob,

Yes - in my case, it was improved 5-10% (and the large median lobe pressing in to the bladder neck is my main issue).  My prostate is relatively small: about 50cc's.  So, I think the PAE helps even in the case of median lobe issues - it just makes it much harder to get the desired result.  I also had gone in to acute retention and had been self-catheterizing for about 14 months at the time of the procedure.  I still am - and I'm still on the same drugs, however my symptoms have improved a bit.

I think it's still theory at this point but someone on this forum mentioned that Dr. Bagla in Alexandria VA was going to target the median lobe directly rather than relying on the results that flowed from targeting of the left and right lobes.  If true, I'd be very interested in following his results.

Good luck!

 

I guess we can both afford to wait as neither one of us is now in retention or has a large PVR. It would be great if they figure out how to shrink the median lobe as well.

Agreed!   (unfortunately, I am still in retention).

I just sent a message to my doc, Ari Isaacson at UNC Healthcare, who is excellent.  I asked him about the possibility of the trilateral embolization.

When I used to cath I could feel my median lobe about 3/4 of an inch inside my bladder mouth. So my median lobe didn't block the bladder mouth. When I got my sonograms I asked for a copy of the sonogram on CD. I could see the median lobe took up about the bottom 15% to 20% of my bladder.

Unless your median lobe actually blocks the entrance to your bladder, your problem could be in the bladder. My cousin's husband got a turp but his bladder lost it's elasticity so he started cathing again 4x a day.

Yeah, mine is very big and pressing right in to the neck/mouth of the bladder (from the outside, of course) and causing the blockage/restricted flow.

Hey Bob. I expect to have a cat in 6 months in Morristown. I would call Dr. John DeMeritt in the Special Radiology Procedures to get the ball rolling. From initial phone call to procedure day was about a month. It's been 60 days and urgency is gone and is dripping and partial bladder emptying.

Hi Gary,

Thanks for the info. When and if I am ready I will call Dr. Demeritt. I have no symptoms now and still need to get an ultrasound to check if the dutsteride shrunk the prostate and if my PVR is still low. I'm presently being treated for lymphoma so the prostate is on the back burner for now. But at some point I expect it to regrow and a return of symptoms. AT that point I'll have to decide on a course of action, and PAE seems a better alternative than a prostatectomy. Aftter 2GL's and a Turp, the surgeries don't seem to last for me.

Hi, could you give me details for Dr Schlapoff?

Thank you.  Allan

Hi Allan, 

Call Liverpool hospital in Sydney and ask for the radiology department. Tell them you want a PAE and would like to make an appointment.

When you meet him say hello for me. 

Cheers 

Peter from Caringbah. 

Thank you for that. I am thinking of Brisbane as I am on the Sunshine Coast, but if it doesn't happen there I will try Liverpool. Thanks again.

Hi Peter

I had the PAE last Monday at Warringal Private in Heidelberg (Melbourne). Done by Dr Dinesh Ranatunga under Dr Schlapoff who came down from Sydney to supervise. It's been just 7 days and I'm down to being up just once a night, from 3-4. So, very happy so far. No side effects, no pain. Just an awareness that something had gone on behind the bladder. I was under for 5hr15m so some parts must have been tricky.

More men need to know about this. I'm very pleased my GP found Dr Ranatunga and referred me.

So it is available in Melbourne.

Good luck

Les

Hi Caringbah, just pm'd you.

Thanks, Nic

Congratulation Les on your PAE procedure. As time goes on I'm hopeful you'll continue to progress. My PAE was in June and took 5 1/2 hours. Like you I began seeing results almost immediately. My prostate was 220 in size and because of Tamsulosin and Finesteride I had retro ejaculation. After a few months, that's ending as well. Wish you the best in the future.

gary

I want to thanks you Caringbah. I had a PAE in August in Sydney Australia, largely because of the research I did which started with this forum. Like many people here, I have had issues for years. I have managed it pretty well (I thought) but basically it controls your life. I found myself just wanting to stay on the farm mostly as it is easy. Anyway it was starting to really annoy me so I did go to two different urologists and got the usual story. TURP is the only option. Well it wasn't in my case. My wife is medical and supportive, but it was interesting that she didn't really understand why I wouldn't just have a TURP either (I assume I was a topic of conversation at her work).

I live in Victoria (about 1000KM from Sydney) so there was a bit of back and forth. I went up for a consultation and CT/MRI on one occasion then when that was OK went back for the PAE a month later. The procedure went for a long time. About four and a half hours watching them take turns to play space invaders, zapping vessels. My arm got pretty sore but it was OK. Apparently they couldn't get to the top of my prostate, but Dr Schlapoff seemed confident afterwards it would be OK as there had been similar (successful) cases in Portugul.  I liked his confidence but felt disappointed as I thought it might not work as they couldn't get to it all.

I booked accommodation close and asked to be allowed to go straight there rather than stay the night in hospital. That was OK and I felt a bit weak (punch drunk) but pretty good. I spent the night sitting on the toilet reading a book as every time I went back to bed I needed to get up again. I wanted to go home on Thursday (procedure on a Monday) and admit I was a bit concerned on Wednesday that I wouldn't be able to manage the flight. Side effects were urgency and a bit of burning when I pee'd but it was more uncomfortable than painful.

Anyway, by Thursday I was great. Got a 6.30PM flight that was stuck on the tarmac with an additional 40 minute delay I got to Melbourne and drove a hour home before I realised I hadn't been to the toilet for hours. Like you I am still improving. I have been a bit paranoid about stopping flomaxtra (even though I don't think it has worked for years) but I haven't had one tonight. I have had no side effects at all after the first few days post procedure. I still wake up one or twice a night but that is minor compared to what it was, and during the day it is amazing. It really hit me when I rode a horse for about 3 hours (impossible prior), at a fairly fast pace and realised I had been going slow for years because of the constant need to pee! I am 60, and feel like a new man!

I understand that everyone can have a different experience, but in my case it has been amazing. I was a few thousand out of pocket ($900 for CT and MRI) but that was mainly because of where I live. It was worth every cent. I also like the idea of the procedure being done by someone super experienced in a big hospital. I am also happy to answer any questions.

Had they used a catheter on you during the pae? That may have accounted for some of the burning.

Thanks for the wonderful update.

Neal

Glad it went well for you Oz. 

The single greatest result of the PAE was returning to normalcy. It's not normal to think about peeing all day. When I had BPH it dominated my thoughts. It suddenly occurred to me a couple of weeks after the PAE, hat I could go four or five hours  between voiding with no sense of urgency and I hadn't had a single thought about ruination all day. Halleluia ! 

Cheers 

Peter 

Sorry ....that should have read....without a single thought about urination. 

I think about ruination all day. 😀

You are right Peter. I didn't realise how many things I avoided subconsciously. I might even have to go to South America with my wife, now a flight isn't an issue. Then again that might be ruination!! 

Cheers, Ian

Dear Caringbah

my name is Roberto G.

I am a 67 years old male and I have an very enlarged Prostate ( something like 370cc. !!) I have been checked at the Fiona Stanley Hospital in Perth,Western Australia,and they are keeping me in waiting because here there are no Specialized Radiologist......I am rather desperate cause my symptoms are really bothersome,like I spend my life in the toilet day and night....have you got some suggestions on what I could do? I am rather depressed and so is my family,because it is now since May that after all the scans,Mri,etc etc and the promise of the hospital nothing has happened and somehow they cannot find an expert radilogist ...the Urologist has excluded the Turp given the size of my hyperplasia.....I read you had the Pae,I hope it is going good with you and I hope to get some info from you or other patients in this forum...thank you very much.

Roberto

Hi Roberto,

     Just checked my less than complete notes that I take when reading posts and came across three posters from AUS that might be helpful for you to search for:

Les3178 and Wanderinghans were definitely in this discussion.

mike588 was probably in another PAE discussion on this forum but I didn't note which one.

 

Hi Joe ,Glad to hear your getting better from the PAE.Joe you said you had this done at UNC. Where is this ?Were you in a clinical trial?

Thanks Joe,

 

Hi Jim, Have you heard what the side effects from Gl surgery are,besides sexual side effects?

thanks 

frank,

Hi Jim, I  am concerned not to touch the speedi cath ,so i bought some sterile pre powdered gloves. Is this powerdered glove good to use for this ?

Jim , bless you for all the good you have done to help all of us on thei form.

thanks

frank

Hi Frank,

I have used the speedicaths. They come in a sterile package of saline and become slick when exposed to air. I never used gloves. I got some betadyne wipes to use on the tip of my penis. Then extended my penis upward. Holding the handle at the end of the cath I dropped the tip into my penis which was held with the other hand and once it entered, I slowly pushed the cath inside. The first bit of resistence is the start of the prostate, and a few inches later the second resistence is the bladder mouth. I pushed the cath about another 1/2 inch and let the urine empty into a 1 liter urinal with markings so I could measure my pvr. If done right, the only part of the cath you would touch would be the handle.

Hi Fouad. I am thinking of getting the procedure at UNC. Can you give me a breakdown of how you did in the weeks and months following the procedure. Did you have any problems with urination in the weeks after and was there any pain. Have you had improvement in urination and getting up at night to pee? Any sexually issues like retrograde ejaculating?

Dido Dr. Isaacson perform our rocedure?

Thanks, Rich

Hi terry, I am considering using Dr bagla and I would like to know how long ago did you have your paw done ? How long did it take ? How long is recovery ? And can you add any information that I may be interested in . Thanks Gary

Hello Peter are you still seeing improvements? I am about to have the PAE done just a little concerned.

Can you tell me how do they know

How many pallets to use ? Can they

Kill the prostate if they use to much?

Please let me know thanks

Hi Gary, I had PAE done by Dr Bagla 4 months ago. The results have been spectacular. It took a month to get the results, with no significant change thereafter. The discomfort after the procedure was minimal. Some urgency and slight burning while urinating. I stayed in my hotel room the day of the procedure, went to the restaurant the next day, and was sightseeing in DC for the next three days (museums, restaurants, walking in th streets). I chose to stay in the area for five days because I was afraid of the long flight back to California too soon after the procedure. Compared to TURP, this was a breeze. My recommendation: take stool softeners for two days before the procedure. The main source of discomfort was constipation. I had some painless bleeding that started 4 days after the PAE, and intensified during the third week. on the 4th week I passed a lot of clots, and there after my BPH problems were gone and my flow as strong as it used to be 30 years ago. No retroejaculation or incontinence. over the last three months, I have been able to stay for 3 or 4 hours without going to the bthroom.

Dr Bagla and his team are very nice, competent and efficient. I wouldn't hesitate to do it again if needed.

Hi, my name is Gunter I am from Germany.

can you please give me an e-mail or information  to  contact  Dr. Bagla.

Thank you very much in advance

sincerely

Gunter Schwarz

I will PM you the info.

I will PM you the info.

Hi caringbah, I am 62 years old, with recently diagnosed BPH. My urologist in Perth does not recommend any treatment. However, I am planning to seek consultation with a radiologist, probably your Dr Schlapoff, to see if I am a suitable candidate for PAE. As it is such a new procedure, I am a little concerned about its long-term efficacy (ie two or three years out). As far as I can see, the operation does not shrink the BPH so much as soften the tissue, allowing urine etc to flow more easily. I would be interested to hear how you ar getting along, a few years after your own operation?

HI comopug, PAE does reduce the size of the prostate up to about 30% depending on the individual. 

Hi Cosmopug,

What are your symptons? Do you have retention? Have you tried a pharmaceutical approach yet like Tamsulosin or 5 Mg Daily Cialis?

You might want to go online and google "IPPS Score" and take the simple 5 minute test. It will help you see how you stack up with others who have BPH.

You mention your urologist does not recommend treatment. Why is that? It could be that he doesn't think your symptons are signficant enough to warrant the risk of surgery or procedure like PAE, and make no mistake, they all have risks.

Like you say, PAE is new. No doubt it will be refined over the coming years as well as newer procedures that are starting to come on board. So, if you really don't need a procedure now, watchful waiting may be your best bet.

The fact that a radioloigst may think you're a "suitable canidate" doesn't mean it's the right decision. 

Jim

Joe, sorry to read about your reaction to the beads. Have things gotten any with your results or reaction in the past 11 months?

Rick

Hi Gary, glad you had such good results from the PAE. It has been 11 months since this post. How are things now? I have read a few cases of good results in the short term but return to pre procedure situation after a short time.

Rick

Hey Richard, thanks for the email.  Not lots of improvement, still have the skin spots, I am guessing they are permanent. But I  had about 6 good months with no infection, but currently back on the prednisone and antibiotics. Wouldnt be too bad if I had at least gotten some improvement in the urinary symptoms, but I can not tell any difference at all pre PAE.

Really looking at FLA now, to see if thst might be the answer.

thanks Joe

I have previously posted on this forum about my immense satisfaction with my urinary tract improvements following my PAE done in early April this year.  I now find that I have joined the growing list of those who have had good short term results but who are looking gloomily at a rapid decline back to pre procedure symptoms. What has been hard to come to terms with is the sheer speed of the turn around. It took about 2 weeks. I am taking a course of antibiotics to ensure that the change has not been caused by a bacterial infection but the early indications are not giving me any cause to celebrate. My issue was an enlarged median lobe. I suspect that the median lobe and the latereral lobes might shrink at different rates or at different times which allows the urethra pinch to be temporarily removed only to be reapplied as the uneven shrinkage progresses. How things settle into their final positions is just the 'luck of the draw'. I will be contacting the interventional radiologist who conducted the procedure to work out a 'where to now' strategy if one exists.

Looking to the future, can anyone advise where I can get good information about the FLA procedure and who might be performing same in Australia. Is there an FLA forum on this web site?

It would be tragic if I end up with a TURP as my only viable option.

John

Hi John,

Several ongoing threads on FLA. Also, check out the thread on "Aquablation", a new procedure now waiting for FDA approval in the U.S.A.  Early studies suggest TURP like improvement without the sexual side effects. Keep in mind both FLA and Aquablation are quite new and come with early adapter risks. 

Jim

Thanks for that Jim. I have found a urology clinic that performs FLA for prostate cancer down south of Sydney. I have emailed them to find out if they have gone the FLA for BPH route. I have also emailed my interventional radiologist requesting a follow up consultation and scans to get a better understanding of what is really occurring.

One concern that I have iwith the FLA is the fact that they enter through the rectum to do it. The potential for highly infectious faeces to leak into parts of my body where it was never intended to be concerns me a lot.

John

You might also want to check out Dr. Peter Gilling, Professor of Surgery, University of Auckland, Academic Head of Tauranga Clinical Site. He is the lead researcher on Aquablation.

Jim

I had PAE April 2016.   I was showing some improvement finally early this year.  In April, I had the same thing happen.  It turned around in about a week.  I thought it could be a mild infection.  Tried a course of antibiotics. Nothing changed.  

Thanks for sharing with me Camster. A challenge that continues. Life is never dull. One step forward, two steps backward. The trouble is I have already researched most of the other options and I don't like any of them. I might just bite the bullet and go for the TURP like my dad recommended. He had 3 of them. At present I am still in better shape than I was before the PAE but not much. John

JimmyJohn, I'm going to see a new urologist tomorrow a little out of my area.  There is nothing new going on in the Pittsburgh area.  His office does Urolift, Prostiva (transurethral needle ablation), and Cooled Thermo Therapy which is microwave therapy.  They are done in the office under local and maybe some sedation.  Both of these tend to have high redo rates aroud 12 to 14% which is a drawback.  I'm there to ask questions.  My prostate can't very big after the PAE, maybe around 29 to 30 cc by the post-PAE MRI.   I'm looking for something minimally invasive with an excellent side-effect profile.  By bladder could be an issue too.  This could be more of a problem than my prostate.  I agree.  There isn't a lot out there that I'm impressed with. The PAE had a great side-effect profile and one didn't need a catheter after the procedure.  They have to work on somehow pinpointing it better to problem areas.  The last two urologists that I saw just offered Greenlight Laser and they felt that was the answer to everything.  That was all they knew how to do so there was no discussion of other options.  It's like having once choice on a dinner menu.  I will continue to keep in touch with Dr. Bagla who did my PAE.  My feeling is that there may be something else involved here than just my prostate.  The MRI didn't tell me as much as I wanted.  Dr. Bagla and Dr. Karamanian both reviewed it.   Cam

Thanks Cam

I went to Pittsburg once back in 96. Thanks again for your helpful comments. I just found out that the urologists I found who do FLA don't use it for BPH. Let me know how you fare with your next round of appointments. John

Cam,

I have just come across IRE (Irreversible Electroporation) for prostate cancer treatment so I have just messaged a clinic in Sydney to see if it might have application as an alternative to TURP. I hope so as it has all the minimally invasive hallmarks that I am looking for. I await their reply with anticipation.

John

Keep me posted on the IRE.  Have never heard of it.  Was studying AquaBlation.  It still has retrograde ejaculation potential.  It has not been approved in the US.  FLA is about $20,000 here and most of the time not covered by insurance.  When the procedure is done through the urethra, more problems can be expected. Also looking at High Intensity Focused Ultrasound.  It has been approved by the FDA for prostate cancer. It is done through the rectum by a transducer.   It does not penetrate the rectum.  It is done by a urologist.  I talked to the company for about 20 minutes.  It would be cashpay for BPH problems.  Can ablate about 10 grams of tissue per hour.  It is done under general anesthesia because one cannot move.  Outpatient with Foley catheter few days depending.  

Cam

@Camster: (Aquablation) still has retrograde ejaculation potential.

-----------------------------

As of last year, no retro ejaculation for Aquablation in 33 patients enrolled in 3 phase I trials per Peter Gilling, lead researcher, Australia. 

Jim

I read about a gentleman that was in the Aquablation trial.   The doctor told him that there is a chance for retro ejaculation, as much as a chance that there isn't with TURP.  The study divided men into TURP or Aquablation.  He was happy that he didn't develop RE.  I will continue to look at your studies.  Thanks.  Cam

Hi Camster,

There were only three trials that I know about for Aquablation, and so far zero retro in 33 men. Please let me know if you find another trial. 

If you google "How I do it: Aquablation of the prostate using the AquaBeam system" , you will find a good description and results of the trials in the Peter Gilling Paper. 

As far as "a chance", I suppose that is true of any procedure, since they all insult the prostate to one degree or another.  

Jim

Jim, is one of the studies you know about in Albany, NY? Three was/is a study at what was the Urological Center of NE NY, which recently became part of a bigger institution (Albany Medical?). One of the docs involved is Dr. Welliver.

Rich

 

Hi Rich,

No. This was done in Australia. Upon further research, it seems that there have been at least one trial since and possibly more ongoing. You can find more about the completed trial by googling the citation below. It would be nice to be able to track all of the trials and results. Note that the conclusion of the trial cited here does not deal with sexual side effects on way or another.

PNFLBA-03

THE WATER STUDY CLINICAL RESULTS

e

A PHASE III

BLINDED RANDOMIZED PARALLEL GROUP TRIAL OF

AQUABLATION VS. TRANSURETHRAL RESECTION OF

THE PROSTATE WITH BLINDED OUTCOME ASSESSMENT

FOR MODERATE-TO-SEVERE LUTS IN MEN WITH BENIGN

PROSTATIC HYPERPLASIA

 

Looks like the Phase I results regarding retrograde ejaculation may not have held up. From Phase III study (181 men):

"Aquablation preserves ejaculatory function...to a greater degree than TURP". At face value, not that reassuring! 

I posted more on the study in the Aquablation Thread here:

https://patient.info/forums/discuss/aquablation-for-bph-517967?page=0&order=Oldest

Jim

Very late to this forum ...I had this done and had no good results at all .

Prostate did not shrink any at all ..Total waste of time and my guy was Bagla .

Now 10 years later I have a blood clot in the leg and wondering if there is any connection ..I am extremely healthy and no smoking , alcohol ,etc .

I know they used a metal clip to close the artery .

The IRA is also known as 'Nanoknife. The Sydney office that I referred to seems to be just a portal for an outfit in Germany who quote really big dollars for the service. They are advertising it for BPH as well as cancer. I also found that St Vincents Hospital in Sydney are using IRA for prostate cancer. I have emailed them to see if they are into BPH yet. I will then hold my breath while I wait for an indication of what they might charge.

John 

Jim, this what I came across as well.  I have to research further, but this doesn't sound like a clearance for AquaBlation.  Just came back from a new urologist.  His feeling is that any procedure that goes through the urethra has a chance for Retrograde Ejaculation.  He feels that Urolift has a very small chance.  He also told me that if the median lobe is not protruding far up in the bladder, Urolift could be done.  He does Urolift.  

I had Dr. Bagla do mine.  My prostate did shrink but the results were minimal.  Others have gotten great results, so good that they no longer come up on this thread.  It is hard to predict results with PAE since it is general shrinking of the prostate.  One doesn't know if there will be enough shrinking in the right spots.  The alternatives aren't that great.  I didn't want any chance of incontinence, retro ejaculation, urethral stricture, sexual issues, etc.  I'm not aware of the clip causing a blood clot.  Maybe others could chime in who do a lot of research.

Just a follow-up.  This urologist today told me that TUMT (microwave) has gone by the wayside.  He no longer does TUNA.  He said it is being replaced by Rezum.  I asked him if he does it.  He stumbled around for an answer for some reason.  I know there is an investment in the technology. 

Maybe PAE.doc could give an answer on the blood clot/clip thing.  He hasn't been on here for awhile.  

The Jersey doc says Rezum is the newest version of TUNA. Not sure if that's literally true, but that's what he said. I've heard the same about TUMT, just didnt work or didn't last very long. The conondrum seems to be the more they take out (TURP is a good example), the more symptomatic improvements, longer durability, but the greater the risk of side effects. The less they take out, less symptomatic improvements and/or less durability but less risk of side effects. I had hoped that Aquablation would break the mold and offer the best of both worlds but I"m guessing it will still result in 10-15% retro although they are being somewhat secretive with their data. So for at least now, no free lunch. 

Jim

Jim, my urologist said the same thing as the Jersey doc.  Also, the urologist said that everyone wants the procedure with no sexual side-effects and great upside.  This is the Holy Grail of BPH treatment that everyone is chasing.  My sense is that Aquablation will have retro issues.  When the channel is being widened, this can be part of it.  Let's hope for the best.  This is the great part of a procedure going from the outside of the channel like PAE and FLA.  The channel is left unperturbed. 

Cam

Last note before bedtime.  The urologist said that 5-10% of patients using 5-alpha reductase inhibitors will have permanent side-effects.  Something about the myelin around nerves being destroyed in the prostate.  I have never come across that in my research.  

@Camster: My sense is that Aquablation will have retro issues. 

----------

It already does per the citations I gave. They are not breaking down the data as clearly as I'd like, but my guess it's 10-15% retro from the last trial. PAE seems to have it's own issues and FLA has mixed results so far.  The Holy Grail is still the Holy Grail and still out of sight. 

Jim

Jim, I have read that PAE has had some failures, allergic reaction to beads and sometimes just not working at all. But, from what has been posted the results with FLA have been all fantastic. The recovery has been slow for some patients with the catheter, but after 5 weeks every review reports great results with no side effects.

Have you heard of some FLA failures that have not been reported?

Rick

@richard11472: :... after 5 weeks every review reports great results with no side effects... 

---------------------------------

Hi Richard,

At least 8 men have reported their FLA results on this forum. Two are having mixed results after 4 months and 1 is reporting no improvement at 4 weeks. 

Jim

Jim

Jim, In the urology field, retro or anejaculation aren't considered sexual side-effects by some.  The urologist that I just saw said it is part of procedures going through the urethra.  He said there are procedures that don't have sexual side-effects.  What he meant was impotence and orgasmic issues.  You can see the same things in studies, trying to find ejaculation issues mentioned.  It is something glossed over because no transurethral procedure has totally solved that problem.  

"Sexual side effects" is a very general term, and I imagine it is used diffferntly by different doctors. It is unfortunate that any doctor would use it in a way that doesn't address retro and/or anejacultion. This is one of the problems with many in the urology community. That said, retro and/or anejaculation are listed and quantified in many studies. So needless to say, always best to do your own research and ask the right questions.

As to "being glossed over", it seems to depend on the study results. For exmple, the Aquablation study made a big deal about no retro ejaculation in their phase I and II studies. However, when they started to get some incidence of retro in the larger phase III study, they somewhat buried that fact to a footnote!

Jim

Cam

The specialist who does the IRE (Nanoknife) in Sydcney is away on study leave for 2 weeks. I expect to find out if he uses it for BPH when he gets back.

John

Hi Cam,

I have just finished my antibiotics. To my great delight my deterioration has halted and turned around. I have recovered about 60% of the loss and my kidneys have stopped hurting. I cant say it was the antibiotics because I also abstained from sex for a week as I had been overdoing it big time for a couple of weeks prior. I also stopped using some natural suppliments I have been using to Boost my testosterone production. Maybe the extra testosterone was not to my urinary tracts liking. I have restarted the suppliments but at a much lower dose rate. Sex will be back on the menu soon but also at a reduced rate.

John

Hi Garry,

Considering Dr. Timothy McClure for PAE . Another option is for Dr Richard Lee to perform urolift. They are both at NY Presbyterian. Who did you use at Hackensack and would you recommend him or her? 

DID YOU EVER DO THE PAE?

I considered it, but my TURP is still working after 30 months. I empty my bladder and don't have frequency or urgency. I've also been taking Dutasteride for 2 years to try to minimize future growth of the prostate.

Glad to hear it

HI Bob

I am interested to know if you have any side effects from the Dutasteride?

I have had a PAE in Feb 2016 but to be honest I do not have severe problems although I have BPH   Only notice a problem if I go out drinking then I need to pee every 20 minutes or so until all the Beer is drained through! Or I will end up in retention which has happened 4 or 5 times in total over last 2 years. I think it’s down to my bladder not my prostate but the urologists disagrees and recommends GL laser TURP which I will not have! I was considering trying Finasteride or Dutasteride. Not sure of difference? Any info would be useful 

Thank s Bob

Hi there can you send me the info how to get in touch with Dr Schalplof for my cousin which wants to do the Pae

Thanks a lot

Roberto from Perth

jimmyjohn,  Hemorrhoids can cause the same problem of bowel leakage into the bloodstream. 

Thomas

Jezzaman, 

Have you had a cystoscopy or a urodynamics test ?  With those two tests the urologist should be able to tell if your bladder is the problem.  An MRI might help also, but is more expensive.

Thomas

Jim,  please do your homework before having this procedure. The amount of radiation you are exposed  to is astronomical. 

Hi Gary,

Can you please explain how much radiation. Ive had the Pae procedure. Im finding it difficult researching Air-Kerma m-gy time. 

Hi Gary,

 

    I'm not an expert on this question, but I did communicate with Dr Bagla's office about it. What you are saying does not appear to be the case with having a PAE with Dr Bagla. I don't know about other offices.

Here is the question to and the reply that I rec'd from Dr Bagla's office in Jan 2017 concerning radiation exposure with PAE at his office:

-----------------------------------------------------------------

  I know from a previous email that you said that the radiation involved for the procedure is less exposure than a typical CT-scan study. I'd be interested in knowing what modifications Dr. Bagla has developed (or uses) that allows for the reduced radiation. I assume that he uses some form of Fluoroscopy.

THE FLUOROSCOPY UNIT WE USE ALLOWS FOR REDUCED PATIENT DOSE.

HERE IS A LINK ABOUT OUR UNIT: (I deleted the link because the moderator won't allow it)

Here's info that you can google to find the info:

Philips USA: product HCNOCTN277  veradius-unity

If you have trouble finding the info, let me know and I will PM the link to you.

Rich

Here is what my research shows. Please print this out and share with Dr. Bagla:

I found out that the peak skin exposure to radiation is 2674.2 mGy. According to my calculations that is: 2,674,000 microsieverts, 267,400 milligray, 2,674 millisieverts, 267.4 rem, and 2.674 sieverts. Now I could be wrong but I welcome everyone to challenge these numbers. I sincerely hope I am wrong.

According to atomicarchive.com 200 to 300 rem will cause "serious radiation sickness effects as in 100-200 rem and hemorrhage: exposure is a lethal dose to 10-35% of the population after 30 days (LD 10-35/50)."[/b]