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

If anyone would like to have a chat with me about my experiences, feel free to pm me with your telephone number and best time/best day to call and I'll try and oblige.

As I said before, it has been life-changing for me, in a very positive way.  Until I discovered the Southampton trial my consultant was pushing me towards a TURP which, as I'm sure you all know, is not risk free.

I too have had the "PAE".  Unfortunately not has happy as you.  I use to get up 4 times a night and now I get up either 3 or 4.  Just a slight improvement.  I had my PAE on Sept. 10th, 2014.  Take Care.  Hows everything over in England???  Iam in the USA.

Sorry to hear yours wasn't as successful.  Jon Dyer at Southampton said I was the ideal candidate as I was "young" (58) and had a very large prostate (150ml).   I'd been suffering symptoms for about 10 years, and finasteride and tamsulosin made no difference but had nasty side-effects.

My symptoms were substantially relieved (if you'll excuse the pun) in about a month.  I gather of the Southampton trial group I'm the one of the ones who's had the best outcome.

Hi Roseland. Did you have that done under the NHS? I need to have similar treatment and am considering this or Green Laser as I'm young to need prostate reduction treatments?

It was an NHS trial.  Having said that I think it's now being rolled out as a standard treatment, because it's much cheaper than a TURP.

TURP is much more invasive and has a small risk of complications (incontinence, impotence).  A friend of mine recently had a green laser treatment and it was six months before he could give up absorbent pads.

There's no reason I know of why you couldn't have PAE, and if that was unsuccessful then have a TURP.

Incidentally, one of my consultants reckons Holmium laser treatment is better than green laser (about 2µm wavelength instead of 532nm) as is allows for the material cut away to be biopsied.  Feel free to pm me if you want to discuss aspects you wouldn't put on a public forum.

Hello Adrian. After a very informative chat with Roseland I made contact with Dr Hacking regards PAE at Southampton Spire. I have been sent a number of Questionnaire's to complete for assessment. If I am suitable and I go ahead with the procedure it will all take place over 2 days and cost approx £9,000. After a re-think I have cancelled a shedulled biopsy and I am now waiting to see my NHS Urologist to decide if I have the PAE.

Geoff019

Ouch, £9000.  I hadn't realised being on the trial was so great a saving.  But if it works for you it's a bargain; it's changed my life.

Hi Geoff019.   NHS Urology will most likely try everything to put you off.  They told me I was unsuitable for PAE but this was not correct.

I refused TURPS and insisted on PAE and got referred to Bournemouth Hospital.  Had the PAE two days ago in Bournemouth on the NHS.   Procedure took less than two hours - very straightforward.   Home same day.   Too soon to know if it worked!     Good luck!

I don't remember my IPSS scores, but at my last bladder ultrasound the consultant initially thought I'd voided completely, and after a few minutes searching recorded 25ml left.

The only time I don't feel I void completely is if I have had to hold off voiding - on a long journey, and first thing in the morning (if I've slept right through) for example.  Then I usually have to go again after about an hour.

Hey Tarzantheman,

About much did the operation cost?

Thank you very much for the positive commentary.  Some doctors will cath during the procedure, then see how well the void is after.  Were you cathed?  I belive Dr Bagda does not cath if I am correct. Congratulations on your experience.  

I believe you are right on about urologists.  In my experience, they not only push the surgeries they perform (despite the severe unreversible side effects) they also seem to fail to mention testing options like PCA3 when PSA is high. They want to biopsy and re-biopsy which I believe is what made my condition worse and worse. And there is no relief of worry with a negative biopsy as your PSA remains high and testing is only conclusive when you do have cancer. 

What I am saying to this group is don't expect a referral from your Dr. 

Tarzantheman, you have provided such a thorough narrative of your experience which pretty much mirrors mine. I hope it helps others to look into PAE. 

As far as questions on cost from others, it may be covered by your Medicare and supplemental insurance. In my case it was with no out of pocket.  Dr. Bagla's office will submit for pre approval. As with most medical costs, the total billed and the allowable amounts are vastly different. My procedure in total (dr plus hospital) was billed at $50k and paid at approx 11k. My guess is this would be less than a TURP as you recover quickly on your own rather than hospitalized. 

I couldn't agree with you more about urologists KC. I believe many of us, including myself have become victims of the Prostate industry. 

I have BPH and an elevated PSA of around 9. I had read a lot about the problems with PSA testing but my GP convinced me to have a biopsy. Big Mistake. I had a 30 core biopsy ....no cancer...great....but now I couldn't pee properly, wheras before I could. 

My urologist put me on Flomax and told me my symptoms would go away. 10 months later still on the Flomax. 

So I started researching .....TURP for me was a no no.....HoLEP looked promising but then I learned about PAE. I thought I had found the go,den Grail.....there is a guy here in Sydney who does it and so I saw him and he arranged a CT angiogram to map out my arteries. Only problem is I'm allergic to contrast dye and so they gave me prednisone before the procedure to contet the allergy. That was two months ago ....I had intense stomach pain which is only now starting to fade, I put in 8 kilos in two weeks,  felt really unwell and my blood sugar went through the roof. Avoid prednisone at all costs!!!!

i can't proceed with the PAE because I'd have to go through the prednisone thing all over again ....not going to do that. 

So im left with HoLEP which I'll delay as long as possible. All this because of bloody PSA testing. 

I have told my GP I don't want any more PSA tests....I'll take my chances. In fact I've met many doctors who also refuse to have PSA tests. In hind sight I wished I didn't have mine tested in the first place. 

I am sorry PAE isn't an option. Did you look into Urolift? I wasn't a candidate for it but sounded promising. 

Yes, but my Prostate is too large...120 cc

Ive had a fair bit of success with supplements, I found that Pygeum, pumpkin seed oil and stinging nettle root seem to make the Flomax much more effective..

Flomax alone.....I'm up 4 times a night at least

Flomax plus sups .....2 times 

I agree wholeheartedly about biopsies.  I had the standard transrectal one first, and one was of the 2% that get septacaemia, ending up in Accident and Emergency for a four day stay in a grim NHS hospital.  That showed one core of Gleason score 6, so I needed a second (transperineal) biopsy.  The consultant (not my regular one) screwed up and I had to be catheterised.  I got an infection from the catheter and had three months of antibiotics, ending up with daily  intraveneous Gentamycin.  Weeks of having to have a hot bath to pee is no fun.  The only good news is that it didn't find any more maligancy.

Happily, as you may see from earlier in this thread, I then had PAE and it has been life-changing; a huge success.

My prostate was 150cc, but following PAE shrunk to 74cc.  When I applied for the trial they thought large prostates responded particulary well to PAE, and my result supports that view.

I would at least email Dr. Pisco in Lisbon at his website.  He will respond.  Tell him about your allergy to contrast dye.  I'm sure he has ran across this already.  He has done many, many PAEs.  

Hi and good evening Allan. Thank you so much for taking the time to explain so much detail. I had a bladder diverticulectomy when I was 46, 15 years ago. It was explained to me that most likely I had a shrinking bladder neck which was congenital, and over the years as the bladder has to keep increasing pressure to get through a narrowing opening, this caused the diverticulum (a ballooning out area). The year before I had a TUIP (less invasive than a TURP) in hopes to avoid the bladder diverticulectomy but it didn't achieve what was needed.

Now 15 years later, the difficulty emptying started again, 4 months back. I refused the cystocophy because the urologist stated it was only for information and no matter what he found he would still choose drugs first to see if it helped, but one must be watched to insure my post void residual on the drugs is good enough to not potenially cause damage to my bladder or kidneys. 

So I started on Rapaflo 6 days back and I don't like it. I'm not even sure I'm emptying better. I'm getting up during the night as much or more than before, and I have retrograde ejaculation. I'm awakening 30-60 minutes before my alarm (sometimes more) and I have trouble getting back to sleep. Rarely such an issue before Rapaflo.

A rectal exam and I was told my prostate feels only slightly enlarged. Does that mean a PAE is less likely to help me? I asked the doctor if I might need another bladder diverticulectomy and he replied that one must fix the issue causing the bladder diverticulum to occur and that is a symptom not a cause. Makes sense. So then, if a PAE is not likely to help if I don't have a large prostate, and I don't want a TURP, other than drugs, does anyone here know of any other options?

Allan, in your last post you stated: 305 reduction in prostate size. What is that mean? Also, in what country is Alexandria?

Thanks for all your help. Bob

Hi Bob,

I meant to enter I had about a 30% reduction in size....... hit the 5 key by mistake. Alexandria is in Washington next to the capital, USA. Easy to get to by all airlines. I have some friends who want PAE (perhaps jokingly) just for the improved sexual side effects!!

You should call Dr. Bagla at INOVA hospital. He will talk with you if you go through his secretary Julie. Best of luck......... Allan

Bob, Dr Bagla released a study this month showing that PAE worked equally well in small, medium, and large prostates.  You can have BPH with a small prostate.  Definitely follow Tarzantheman's suggestion below.

Hi Mike. Saw my original urologist today - the one who performed the Diverticulectomy on me in Jan 2000. He had a completely different take than my new urologist. Stated that since my post void residual has always ranged between 170 & 200 and it was 200 today, that I am very stable. The new urologist I don't think even looked at my former doctor's records and he had put me on Rapaflo, which I stopped after the trial as it definitely didn't help in the 6 days and in fact worsened my sleep.

The old urologist I saw today thought I had prostatitis my feeling some mushiness (I think he said that) in my prostrate but he said my prostate is not enlarged. All my former doctors told me (including him in past visits) that I have a very slightly enlarged prostate, so not sure why he thought different today.

So he put me on 10 days worth of Bactrim DS for the prostatitis. While I dont like taking antibiotics, IF this doctor is right then all this will go away and I'll sleep better and just deal with getting up 1-2 times a night, which I can deal with :-). Anyone else here been treated for prostatitis? What kind? What happened and how did the doctor diagnose it?

I looked at my insurance and I think they will cover PAE with Dr. Bagla.  I called my insurance last month and they will cover it without preauthorization.  I will have to pay out-of-network.  I can drive there since I live in Pittsburgh.  He is the most experienced doing PAE.  It sounds like you definitely had a great experience.  Any comments or insights would be appreciated.  I want to do something in the near future because I'm really blocked.  Prostatitis makes things worse.  Hopefully my insurance will come through.

Guess it depends on where you are. I'm in the US and have been conversing with the University of North Carolina at Chapel Hill. Over 65, have medicare and an ultrasound showing mass of at least 80 , the procedure is covered by Medicare. If you don't meet the requirements, they will still do the procedure but it will be out of pocket at $6500. Seems a lot better than the $50k quoted. There's also Duke University doing the PAE, but haven't connected with them yet. My problem is not getting up multiple times a  night but I do have the urgency at times, the drip, but the biggest fear is NOT being able to go. Have already had one experience having to go to the Emergency room to be catherterized and if I had had  a pistol, I would have ended me right there. I have never been in so much pain in my life...and thatwas before the catheter (inserted twice) Going too much or not going..I'll take going too much any day. As far as sex, been over 10 years now so not worried about that aspect...

John,

i had had mine done at UNC in their clinical trial. Dr. Isaacson is great. My prostate was 128g with a median lobe. My biggest problem like yours was not being able to go and having to be catheters in the emergency room. Afterwards I had several times of having to self cath. I was getting up 4 times a night on average and had to pee 20 or more times a day. Now I don't think about peeing at all. I have not gotten up at night for over a month and can play a round of golf without having to go. Needless to say I feel like I have been given my life back. The cost for me was free because of the trial and Medicare. Don't let yourself suffer any longer get it done

Are you alone, or do you have other problems preventing sex? I have a penile implant, and they are GREAT!

Neal

KC110:

Thanks for all the info.  Hmmm...my top of the line Aetna insurance has denied coverage for the procedure.  What insurance do you have that covered it?   Thanks

Tell the idiots that PAE works and that it can be half the price of a TURP.

You can get it done in Lisbon, Portugal for about $5k US. 

Tried that...not to mention the cost of the drugs and, in my case, 150 catheters monthly!    They say it hasn't been proven for BPH, but it seems like the proof is at least as good as it is for TURP - at much less cost.     Thanks

Thanks Mike.