PAE
Posted , 12 users are following.
I would appreciate hearing from anybody who has had a successful PAE, from anybody who has had an unsuccessful one or from anyone who is knowledgeable of it. I'm starting to focus on PAE and I know their is a wealth of knowedge on this forum. I've heard good things about it. I've heard that it is covered by insurance, but not sure about medicare. I'm 67 years of age and other than BPH I'm heathy. I recently had a clear prostate MRI (negative for tumors suspicious lesions), my prostate is about 79 cc's with meidan lobe hypertrophy projecting into the bladder. My PSA's fluctuate between high 2's and low 3's. I'm slowly learning to CIC, (scares the sh-t out of me). Done it twice and it ain't fun. The way my BPH is progressing I may have to start doing it on a regular basis soon. Anyways I would like to get all the info I can about PAE so I can rule it in or out and start looking for provider if I determine it's the right procedure for me. Thank you.
0 likes, 40 replies
tom86211 gary37907
Posted
Gary,
Based on responses from men on this forum who have had a PAE (myself included) it was less than successful where a median lobe was present. IRs are getting better at dealing with this, so you should speak with your IR and find out if he has been able to do an effective PAE with median lobe issues.
Mine was fully covered by insurance (Kaiser).
Tom
stan98754 gary37907
Posted
Hi Gary,
I have had very similar diagnosis as you . Prostate just 55ml with extremally big median lobe IPP - protruding to bladder - acting like pressure valve.PAE in Lisbon Portugal May 2017, Fully NO effect
just waste time and money. After more study and investigation I learnt in case of mydiagnosisPAE is failed in 80-90 % . MRI showed the real anatomy and after consultation I realised the reason of failure. Anyway I provided CIC from 2016 to April 2018 just to buy time . ( But it was hard time - several infection, bleeding ,etc. April 2018 is milestone of my life after FLA procedure in Houston with Dr. K.If you need more details, pls PM me . Stan
TKM gary37907
Posted
Gary,
My last reply is waiting to be moderated.
I will write it again avoiding any links or email addresses.
I had a PAE done in 2013 which did not help probably due to my enlrged median lobe.
Anecdotal evidence suggests that PAE is not as successful for enlarged median lobe.
I had an email conversation with:
Sandeep Bagla, MD
Vascular & Interventional Radiology
Vascular Institute of Virginia
Woodbridge, VA
1 Do you have a procedure to treat enlarged median lobe ? I presume you would block arteries supplying the median lobe.
Dr Bagla: Yes we target these arteries
Dr Bagla: Many but don’t know exact number
Technical success near 100% and clinical success near 90%
Dr Bagla: Never seen this
Hope this helps,
Thomas
ramblin gary37907
Edited
I had a PAE at St. Louis University in St. Louis, MO on July 2, 2015. My prostate was about the same as yours at 80cc. They were not very good at doing it. They could only get to one side, and I think they missed the prostate artery on the side they reached. I had some small improvements for about six months, but then I suddenly reverted to pre-procedure problems. Since, I've had ultrasound analysis which showed that some shrinkage occurred in the outer zone of the one side, but not in the core of the prostate where it would have helped. My prostate looks like the Apple logo. I have now had a Urolift, and I'm having problems with that. The PAE cost me $7000, my insurance $37,000. The UROLIFT cost me $1400, my insurance $6400.
I see both procedures as having great potential and preferable to TURP. Success for the PAE depends, more than anything, on getting an Interventional Radiologist who has done numerous procedures and is dedicated to keeping himself current on updates from the medical community.
ramblin
Edited
Update: I had a second PAE (different IR, same hospital) on May 28. This procedure used a wrist entry point, and was 4 hours while awake, very little anasthetic. My right side was successfully embolized, but I will need to go back to get to the left, which will be a femoral procedure. My Urolift, which was completely unsuccessful and left me in considerable and constant pain, prompted me to seek a second PAE - my urologist, of course, had recommended TURP, which I will not consider. The good news is that the pain of the urolift was gone immediately after the procedure. My nocturia has improved from 10 times up per night to 4, even though I'm only halfway there. I am now anxious to get the left side done.
One issue I wanted to mention was that the urolift did not prevent me from getting the PAE - I've seen that concern mentioned in this forum.
arlington gary37907
Edited
Gary,
I had an unsuccessful PAE and was told that the odds of success are much less when there is an enlarged median lobe.
The CIC gets much easier. I said no way at first but am accustomed to it and, while, not ideal, I think it is the best option while waiting for a better procedure to come along.I've tried 4 different caths and find the coloplast speedicath male compact by far the best.
Best of luck!
TKM arlington
Posted
Arlington,
Where and when did you have PAE done ? Did you have an enlarged median lobe when your PAE was done ? Did they do the new procedure for enlarged median lobe, blocking median lobe arteries ?
Thomas
chuck68670 gary37907
Edited
Gary, I am in a very similar situation as you (BPH for well over 18 months). Haven't had an MRI, but they did digital check, ultra-sound, and cystoscopy. They haven't measured my prostate, but say it's "fairly small" and is "probably" swelling/growing inside and causing a severe restriction of my urethra. They recommended the Urolift procedure; I think because that is one of the things they specialize in. I too am very interested in PAE and have heard mostly positive results. Where are you located ? I live near San Luis Obispo, California and am currently trying to find a good Medical Provider / Urologist that is experienced with PAE in my area. And as far as CIC... I too have done it and fear it (3 times, thus far), each time with smaller french size cathaters, because the first time it made me bleed. I found that 8 fr and using lube helps Tremendously; so as not to damage my urethra. Any suggestions and recommendations from others, would be greatly appreciated.
tom86211 chuck68670
Posted
Chuck,
You didn't mention your insurance coverage. If you're with Kaiser you can get a PAE from Dr. Hastings at the Kaiser Medical Center in Oakland - a GREAT IR doctor. The PAE is covered by Kaiser insurance. All you have to pay is the copay.
Tom
TKM chuck68670
Edited
Chuck,
There have been some posts on this web site about good results with a PAE doctor in San Diego, I don't know the name. You should try to determine if you have an enlarged median lobe. In the past large median lobe patients did not do well with either Urolift or PAE. however there are new techniques with both procedures for the enlarged median lobe.
Everyone has problems with bleeding when first starting CIC, it is normal. You have to watch carefully for UTI when there is bleeding, Be sure to keep every thing clean. I wash the opening with a providone iodine wash. Use a measuring cup and if the urine gets cloudy or smells bad suspect UTI and get a head start by seeing a doctor for testing and possible antibiotic. If there is bleeding the body will heal it and after a week or two it will not happen again, and you will not feel any pain going in.
Thomas
richp21 chuck68670
Posted
Chuck,
PAE's are not performed by urologists, they are performed by interventional radiologists (IRs). That's one reason that most urologists probably would not recommend a PAE. If you decide on a PAE, be sure to go with a doc who is very experienced. I had a PAE done by Dr Sandeep Bagla in VA, probably the most experienced PAE doc in the US.
Rich
richp21
Posted
Don't know why the formatting gets messed up on this site. Here's another attempt:
PAE's are not performed by urologists, they are performed by interventional radiologists (IRs). That's one reason that most urologists probably would not recommend a PAE. If you decide on a PAE, be sure to go with a doc who is very experienced. I had a PAE done by Dr Sandeep Bagla in VA, probably the most experienced PAE doc in the US.
chuck68670 tom86211
Posted
Thanks Tom. Wish I had Kaiser, I have Anthem Blue Cross. PPO
chuck68670 TKM
Posted
Bless you for the encouragement Brother.
chuck68670 richp21
Posted
Rich, if I was rich (all pun intended) I would fly out to Dr. Sandeep Bagla in VA in a heart beat. I've read numerous Positive comments and conversations for/with him on this site and elsewhere. Alas, I will need to stay on the Left Coast (Calif.) and seek out the best IR, as you recommend.
I will also request an MRI, to ascertain if I have a median lobe obstruction or other contra-indicative issue before having a PAE.
You Guys are all AWESOME. Knowledgeable, Supportive, Reassuring, etc... and above all else.... Entertaining ! LOL
Chuck
richp21 chuck68670
Posted
Good luck. Let us know how this all unfolds for you.
Rich
chuck68670 richp21
Posted
Rich,So far I have found that my "local area" IR's (San Luis Obispo Radiologists) do not perform PAE and could not or would not refer me to any IR who does. Thanks to this group, I have contacted both Kaiser Med. Center in Oakland, CA as well as UC San Diego Med. Center.
The former charges big $$$ because I'm not part of their HMO or PPO or whatever health care system, and the later is currently in Clinical Studies until 2022; of which I "may" qualify to participate in. Simply put, if they accept me, I would have to drive about 6 hours down and 6 hours back approximately 5 or 6 times (initial procedure, 1 month follow-up, 3 month, 6 month, 1 year and 2 year follow-ups). Hence at this point, I'm laying all my eggs in one basket (so to speak 😉
I will of course, keep this group updated; hopefully with positive news. As others have stated, I sincerely appreciate all of my Brothers (and Sisters too) posting their experienced based knowledge. And I believe sharing our experiences will help other people make better informed/intelligent choices for themselves inre these related conditions (*ala Ken, Kenneth, Thomas, Tom, Gary, Ramblin, Rich, Arlington, Stan, the other Chuck, and everyone else I am forgetting...).
TKM chuck68670
Posted
Chuck,
You should find out if you have an enlarged median lobe (EML) first, either by MRI (preferably 3T MRI), Cystoscopy, or TRUS, ask your Urologist. If you have an enlarged median lobe ask the clinical trial if they do a procedure for the median lobe. If they don't you may be wasting your time even though it's free. If you have EML you may be better off finding a doctor who can do the EML procedure like Dr Bagla in Virginia.
Thomas
chuck68670 TKM
Posted
Thanks Thomas. I did have a cystoscopy and the Uro said "there's no problems". At the time I thought he was referring to kidney stones or infections. In retrospect, now I'm not sure exactly what he was referencing. So I will request an MRI (3T MRI if available) to check for EML, before I undergo any "procedure".
richp21 chuck68670
Posted
Had a thought... pretty much a long shot. A lot of the $$ figures quoted for PAE are $$ that are charged to the insurance companies. Self-pay costs can be significantly lower. Do you have any amount that you could afford to pay?
Rich
chuck68670 richp21
Posted
Well this affliction is a Life dominating issue, that I would be thrilled to conquer. It ruins my sleep, makes me conscious of what, how much, and when I eat/drink. It determines my schedule, plans, physical limitations and sex life. Heckadoodle, I can't remember a day when it was not an omnipresent factor in my day-to-day thought processes.
So yes I could probably, No I could Definitely, come up with several thousand dollars. It wouldn't be easy because I'm retired with a fixed income. And like everyone, my resources are typically measured/allocated towards making sure all the bases are covered.
Yet making that kinda stretch, isn't as concerning as what happens if the procedure I try doesn't work. Then, combined with the hole I'd have dug getting there, I and my wife would deal with more restrictions/limitations; and my future choices to alleviate this "constriction" would also be reduced.
Okay enough with "worrying" about "might" go wrong, I am genuinely interested in knowing all my options to escape from the grasp of BPH / LTUS / etc... ; so tell me how that "Self-pay costs can be significantly lower." kind of process would work...?
alanatcroydon chuck68670
Posted
Chuck. I don't know what the cost would be in the USA but in Poland the package was PLN 12500 (about USD $3500 at current exchange rates) + fares. I guess, as a fellow pensioner, it comes down to what is more important : stopping the night time interuptions v a good holiday, a new car, extended family??Alan
tom86211 chuck68670
Posted
Chuck,
You could always switch your insurance to Kaiser. If you are over 65 you would have to go on their Medicare Advantage plan, and the switch is only allowed in Nov and Dec.
I had my PAE done in Oakland in Aug of 2017. Arrived at the hospital at 7am. Paid a $250 copay, then the procedure started about 8am. Took about two hours, very pleasant. I was completely awake but sedated. Felt no discomfort at all. Then, I was taken to a hospital bed and had to be in that bed until the afternoon to prevent bleeding at the insertion site (right femoral artery). About 1pm I requested a Foley catheter because I could tell that my bladder was getting very full. They drained off about 600cc of urine and I was comfortable again, but bored being in the bed. I was cleared to go home that afternoon, the Foley came out, and my wife picked me up.
The first week at home was a bit uncomfortable, but easy. I took Flomax and Tylenol to increase the urine flow and mild discomfort when urinating. Symptoms almost gone week two. By week three back to where I was before the procedure. After that I experienced a gradual improvement in my pre-PAE symptoms, but due to my median lobe issue I would say the procedure was only a minor success. I didn't have to make any trips back to Oakland for checkups. There was a six month followup call from Dr. Hastings, so I don't know why you would have to drive back and forth to San Diego.
If I have a second PAE the doctor will target the arteries going to the median lobe. My current biggest issue is getting up too many times at night, and my urine retention of about 200ml, so my prostate size and shape is preventing me from completely emptying my bladder. Besides a second PAE my other option would be a bipolar TURP. Have not decided what to do yet, so taking two Flomax per day to get through this period.
Hope this info helps....
Tom
chuck68670 alanatcroydon
Posted
Alan thank you, I would love to visit Poland. But the RT air fare and hotels would cost about $2500 (via LOT from LAX to WAW) so I will keep it in mind, should the $6,000 range become my focus.
By the way, would you consider your PAE a success or...?
chuck68670 tom86211
Posted
Tom, Thank you for the information. However my wife says the available Kaiser Health care options in our area are limited. Would be Great for the PAE in Oakland though.
The UCSD program is a "Clinical Trial" (free except for my associated expenses) and I get the impression that they will want to do a "series of tests" each and every time I drive back down to see them for follow-ups.
Glad to hear your retention is down to only about 200 cc (*not ml I hope). I tried Flomax and Proscar; I had bad reactions to both, so CIC plus all kinds of homeopathic, and anecdotal measures are where my current efforts are focused... pending an actual medical procedure of some sort. I am very hopeful about PAE.
tom86211 chuck68670
Posted
Chuck,
Too bad about the Kaiser options. The clinical trials do require a lot of repeat visits. You might call various hospitals near you and speak with the IR departments to find out if anyone knows who is doing PAEs near you.
I have never had any problems with Flomax, so take two per day.
ML and CC are the same, so my bladder is always 1/3 full even when I think it's empty.
Tom
richp21 chuck68670
Posted
Hi Chuck,
I have a question and them I'll answer your question. I looked through your previous posts and didn't see anything about whether you had considered or tried tamsulosin or daily Cialis. If you haven't, I would put them in the mix as something to consider.
Regarding self-pay. Prior to having my PAE about two years ago, I spoke with two possible IRs about whether it would be appropriate for me, and if my insurance would cover it. Since it was two years ago, prices may have changed, but both offices had self-pay prices if my insurance wouldn't cover it. One was $6,000 and one was $ 8,000. My insurance eventually did cover it, and my insurance was billed a considerably higher amount. My suggestion for you is to call any IR that you are considering and asking for their self-pay price. From what I've read, it seems that medical providers in general often offer discounts to self-payers.
Are you on Medicare yet? There are a few wrinkles when using Medicare for coverage.
Rich
richp21 tom86211
Posted
I have a question and them I'll answer your question. I looked through your previous posts and didn't see anything about whether you had considered or tried tamsulosin or daily Cialis. If you haven't, I would put them in the mix as something to consider.
Regarding self-pay. Prior to having my PAE about two years ago, I spoke with two possible IRs about whether it would be appropriate for me, and if my insurance would cover it. Since it was two years ago, prices may have changed, but both offices had self-pay prices if my insurance wouldn't cover it. One was $6,000 and one was $ 8,000. My insurance eventually did cover it, and my insurance was billed a considerably higher amount. My suggestion for you is to call any IR that you are considering and asking for their self-pay price. From what I've read, it seems that medical providers in general often offer discounts to self-payers.
Are you on Medicare yet? There are a few wrinkles when using Medicare for coverage.
Rich
richp21 chuck68670
Posted
I have a question and them I'll answer your question. I looked through your previous posts and didn't see anything about whether you had considered or tried tamsulosin or daily Cialis. If you haven't, I would put them in the mix as something to consider.
Regarding self-pay. Prior to having my PAE about two years ago, I spoke with two possible IRs about whether it would be appropriate for me, and if my insurance would cover it. Since it was two years ago, prices may have changed, but both offices had self-pay prices if my insurance wouldn't cover it. One was $6,000 and one was $ 8,000. My insurance eventually did cover it, and my insurance was billed a considerably higher amount. My suggestion for you is to call any IR that you are considering and asking for their self-pay price. From what I've read, it seems that medical providers in general often offer discounts to self-payers.
Are you on Medicare yet? There are a few wrinkles when using Medicare for coverage.
Rich
richp21
Posted
I can't seem to get this formatting bug corrected with this site. Sorry guys for the garbagey posts.
Chuck, I will send you my reply in a PM.
Rich
alanatcroydon richp21
Posted
Rich. I see your suggestion about using tamulosin and Cialis. How would that work? I ceased tamulosin when it diminished my sex drive while cialis was helping my ED. Alan
richp21 alanatcroydon
Posted
Hi Alan,
My suggestion was tamsulosin or Daily Cialis. Not sure if that answers your question.
Rich
richp21
Posted
Hi again,
Not sure if that answers your question.
Rich
alanatcroydon richp21
Posted
Rich. Thanks. I would not touch tamulosin again (for the reason I cited; and because other guys on this board cite the same disadvantage).
I was prescribed 20mg Cialis (now available in the UK as its generic tadalafil) to counter ED. Until I read comments on this board I had not heard of using smaller doses to help cope with BPH. Frankly I feel that the BPH problem which I suspect we all have (but, maybe, don't acknowledge) is best tackled not by drugs but by a procedure (like PAE which I had last year) or intervention surgery (of which prostate removal in whole or part is the most dramatic). I dislike the idea of regular catheters. Alan
richp21 alanatcroydon
Posted
I'll try shorter posts to see if that fixes the formatting problem I'm having.
richp21 alanatcroydon
Posted
Hi Alan,
I had a PAE two years ago and it has allowed my so far to stay off any meds.
richp21 alanatcroydon
Posted
Daily Cialis is the only form of Cialis that is marketed for BPH as well as ED.