Decision time: Trying to choose among PAE providers
Posted , 13 users are following.
In my time on this board I've received invaluable insights, advice and information, and I'm turning to the men here for more help.
I'm 60, and having suffered with BPH for a decade - with things getting worse since 2015 - I believe I've reached a point where I must act.
My plan is to rule out/confirm if I have a bacterial infection via DNA sequencing with MicroGenDx. If I have an infection I will ask my GP to send me to a top infectious disease specialist. If no infection, I think my next step is PAE. I would want to rule out or treat any infection before any surgical option, and I think this is only prudent for every man.
I spoke with Dr K about FLA. I spoke with men who've undergone FLA. That would be on the table for me but for prohibitive costs associated with it. I have no allusions that the US insurance companies are going to approve FLA any time soon.
I spoke with Dr Bagla, who has probably the most PAE experience in the States. I have no reservations concerning his technical skills. Yet, I got the impression on the phone that he was multi-tasking as he spoke with me, and the conversation was both brief and hurried. I read reviews of his patients that commend him for his skills but critique him unfavorably for his lack of post-surgery follow-up.
I am thinking, should I proceed with PAE in the next few months (assuming I have no bacterial infection to first treat) of going with either Dr. Isaacson or Dr. Bhatia.
I think both would be fine choices, and am wondering if men out there have had PAE with either of these doctors (or, for that matter, with Dr. Bagla).
The reviews for Dr. Bhatia do impress, as patients laud him for his surgical skills and compassion - these are the two reasons patients of Dr. K who've undergone FLA have encouraged me to seek help from him.
PAE is must less expensive than FLA: $6000-$7000 vs $22,000-$30,000 OOP.
My prostate is large (150 cc, perhaps more than that). Pelvic floor exercises and PT have helped quiet down some LUT symptoms but I still am dependent on Flomax twice a day.
I don't like the thoughts of blocking arteries with microspheres, but none of the intra-urethral options appeal to me, even though HoLEP probably offers the fastest response time of anything out there. If I did go with HoLEP I'd probably pick among doctors from Indiana University or Vanderbilt.
I've been praying over this and researching options. My urologist (I won't mention his name) is one of the world's most foremost surgeons, and he can perform a partial open prostatectomy. I have complete confidence in his skills. However, he is conservative and cautious, and advises me to pursue major surgery only as a last resort. That he isn't pressing me to schedule surgery is one reason I like him so much.
I did get the sense that Dr. Bagla was pushing me to schedule the procedure right away. Again, I believe Dr. Bagla is a first rate technician, but I do think bedside manner and accessibility post-surgery are key variables in making a selection.
I welcome any comments, suggestions and advice.
Thank you all,
Michael
0 likes, 58 replies
lrp1 MichaelVM7
Posted
Hi Michael,
My suggestiom is: enter in contact with Dr. Martins Pisco in Portugal. He has a lot of knowledge in PAE and unfortunately I couldn´t do my PAE with him. But if I have to make a second PAE I will for sure.
MichaelVM7 lrp1
Posted
Irp,
I know of Dr. Pisco from this board. He is the founder of PAE. But I have to find a doc in the States. $$ limitations.
Michael
gene97713 MichaelVM7
Posted
Go for PAE. It has practically no side effects and improvements are great, particularly with you size of the prostate, when all other methods are risky, except total open or robotic resection. I had mine PAE in March 2018 with Dr. Picel from UCSD (trained by Dr. Isaacson) and current results are beyond my wildest expectations.
If you can pay $6000-7000 go for it. You can repeat it in . afew years or use anything else later.
Good luck.
P.S. All doctors you have mentioned are good. No need to travel to Portugal. I have chosen Dr. Picel because he runs a small clinical study and I live in San Diego. Being at home after PAE won't hurt. First two weeks can be unpleasant but no comparison to TURP or else. No bleeding, no catheters.
MichaelVM7 gene97713
Posted
Thanks Gene. I was hoping to find a pt of Dr Bhatia here. I like his reviews. Ideally, I would meet with the doc first and ask a lot of questions. I felt very rushed on phone w/ Dr Bagla. I've read of a couple of men who flew all across the country to meet with top urologists and top interventional radiologists, and then made their decisions. I can't do that, so I am trying to narrow it down to Bagla or Bhatia if I go w. PAE.
I need to act soon, but the thought of tissue dying inside of my body is a difficult idea to overcome. If I were wealthy, I'd already have had FLA by Dr Karamanian. So, I'm left w/ PAE or HoLEP.
Michael
gene97713 MichaelVM7
Posted
derek76 gene97713
Posted
MichaelVM7 gene97713
Posted
How can infection disappear after PAE? Antibiotics can't even reach all of the prostate after PAE is done. I'm sorry Gene, but intuitively this does not make sense to me.
I read of one guy how had FLA, and afterward, his infection got much worse. And FLA leaves a fully intact vascular network to deliver antibiotics to the prostate to fight the infection. PAE does not. Parts of the prostate die from no blood delivery.
Dr Bagla told me it would be a few weeks and there would be great improvement. Yet, I read a study that showed PAE benefits don't match TURP benefits for 9-12 months post-op. HoLEP has immediate benefit. Maybe I need to study PAE more.
Michael
dl0808 MichaelVM7
Posted
80cc is consider a large prostate and is beyond the reach of TURP. 150cc is a VERY LARGE prostate, which in the old days would require open prostatectomy.
Just wondering if u are positive that PAE and FLA are effective for such a large prostate. Also the probability of success and long term re-operation rate.
also wondering if u are definitely can not live with RE. If u could, there are a lot of success stories for patients with very large prostate treated by HoLEP.
If interested, See for example:
[url=steadyhealth.com/topics/experiences-with-holmium-laser-enucleation-of-the-prostate-holep-laser-surgery?p=1991901#1991901]steadyhealth.com/topics/experiences-with-holmium-laser-enucleation-of-the-prostate-holep-laser-surgery?p=1991901#1991901[/url]
dl0808 MichaelVM7
Posted
Just wondering if u are positive that PAE and FLA are effective for such a large prostate. Also the probability of success and long term re-operation rate.
also wondering if u are definitely can not live with RE. If u could, there are a lot of success stories for patients with very large prostate treated by HoLEP.
curious if ur decision is based on short or long term relief, subjective or objective.
If interested in HoLEP for large prostates, Google
experiences-with-holmium-laser-enucleation-of-the-prostate-holep-laser-surgery
dl0808
Posted
I read that a normal size of prostate without BPH is 20-25cc.
MichaelVM7 dl0808
Posted
Yes, TURP upper bound is 80 cc. A 21 year old man has a 20 cc to 25 cc prostate. Most 60 year olds have some enlargement. My case is probably 2-3 standard deviations to the right of the mean for men my age.
I'm considering HoLEP. Not too concerned over RE. I am married but am celibate and have been for years. Not likely to ever change so RE is not a deal breaker.
PAE is not thru the urethra, HoLEP is. Don't want to risk strictures or damage to urethra.
FLA also does not enter thru the urethra. My insurance won't pay a dime for FLA. It will pay for partial RP (major open surgery) that will cost my insurance company more $$ than FLA.
My wife wants me to have major surgery because it's in network. I told her RP has greater risks than FLA but $$ is more important to her. And what little we have is ours, not mine.
Michael
TKM MichaelVM7
Posted
Michael, I think PAE would be good in your case. It works well for large prostates, and it is the most minimally invasive of all procedures for the prostate. Any other procedure can be done after it, including another PAE. You did not mention if you have a large median lobe. You should try to find that out from your Urologist. A large median lobe was something PAE did not work well for in the past, but I read in a few places that there are new PAE procedures for it. They plug a certain artery that supplies the median lobe. If you have enlarged median lobe you should look up information about the procedure and find a doctor who has done it. btw I have done PAE in 2013 and it did not help me, but I have the enlarged median lobe, and I was the second patient done in the clinic where I had it done, so don't know if everything was done in the best possible way. You need to find a doctor who has done may PAE and has a good track record.
Thomas
owen35669 MichaelVM7
Posted
You mention your sense of a possible prostate "infection". For my own almost-20 years with BPH, the going gets really rough (pelvic pain, up at night 4 or 5 times, etc.) when I dip into prostatitis. I have actually forgotten my past history of this condition over the years -- until the light goes on and *I* have to tell/ask my uro: "Could this be recurring prostatitis -- like I had a year or so ago?"
Right now, I am 2+ weeks into la 4-week regiment of sulfa meth -- for prostatitis. The relief from pain/discomfort came on the very first night and has continued these 2+ weeks. No more pelvic pain (for now). I take the twice daily sulfa-meth with 2 advil before bed for inflammation + flomax. Of couse, I try to restrict fluids after 7 pm.
The big question, of course: will my symptoms continue to have subsided once the meds stop.
I guess my point here is the prostatitis -- possibly your prostatitis? It is a nasty, 24/7 affliction. I have tried to read up on the subject and have "learned" that prostatitis can be aggravated by, among other things, too-frequent orgasm. That is for every man to decide, but my own path is to continue the meds while cutting back
on the manly workout of my prostate gland.
That...and the meds.
Hope this helps and I wish you well.
owen35669
Posted
P.S. I am an otherwise healthy 72...so you're a youngun' to me
ed70868 MichaelVM7
Posted
I had my PAE procedure done at University of North Carolina medical center 'Oct 28, 1915. I was about Dr. Isaacson's 40th client and self pay which was 6500 back then. My insurance paid for the CT scan but not for the procedure. I had a 3T-MRI done with contrast Oct last year and a biopsy done the last week in Dec. It was negative. I sent the MRI to Dr. Isaacson and he indicated he are more aggressive with the process now and he stated my prostate would be a good candidate for further reduction. I will be scheduling one for Dec. or Jan. The cost is now 10,500 for self pay. I sent them all my insurance information and their staff who handles the medical centers insurance issues contract Florida Blue and my cost will be about 3000. i live in Florida. The size of my prostate in Oct was 97 g. Was on two a day flomax before the procedure and have not taken any since middle of Dec. 2015. Hopefully this will solve the urination issues for 5 years or more this time.
I understand if you have medicare it will cover 80 percent of the cost.