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Decision time: Trying to choose among PAE providers

Posted , 13 users are following.

MichaelVM7
MichaelVM7

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

58 Replies

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  • richp21
    richp21 MichaelVM7

    Posted

    I am on the road traveling so only have time for a short reply. I had a PAE with Dr Bagla and have only the best things to say about him and his staff. Truly wonderful. I was in the phone with him 3 times before the procedure, and have had 3 post procedure follow up calls. Happy to answer any questions when I return home at the end of this coming week.

    Rich

  • Howard31850
    Howard31850 MichaelVM7

    Posted

    I had PAE 2 years for my 240gm prostate and while it reduced my prostate size to 180gm it provide no symptom relief. An MRI showed there was no tissue removal around the urethra where the constriction occurs. Within a year I was back at 240gm. FLA is good because it removes tissue around the urethra directly but the procedure is costly ($20,000. +).

    I learned to do self-cathing (CIC) rather than take a risk with other procedures like Holep and GLL which can have bad side effects. You might want to try it as it is quite benign. I am hoping in the next few years some new procedures will become available for BPH that are not so dramatic or expensive. Good luck. Howard

  • joseph34828
    joseph34828 MichaelVM7

    Posted

    If PAE is for stopping the growth, does it remove  the obstruction thats already there?
  • gene97713
    gene97713 MichaelVM7

    Posted

    Yes it does. It did in my case. My prostate was 135 g. with strong obstruction of the bladder neck. Perfected (targeted) PAE in March 2018 removed the obstruction 100 % and my stream is now 14 cc/sec. With large prostate it's the safest way to go but nobody know how long it will last. It's very individual, depends how fast the vessels will grow back, etc.

    • TKM
      TKM gene97713

      Posted

      Gene,

      When you say "Perfected (targeted ) PAE" do you mean, the new PAE procedure that blocks arteries that feed the median lobe, to shrink an enlarged median lobe ? If so, you are the first person on this forum that I know of who had the new procedure.

      Can you talk more about it. Who did it and where ?

      In the past PAE did not work well with an enlarged obstucting median lobe. I have an enlarged median lobe and the PAE I had in 2013 did not help me. I would be interested in hearing more about it and where I could have it done.

      Thomas

    • MichaelVM7
      MichaelVM7 gene97713

      Posted

      Gene,

      A flowrate of 14 cc per second is good

      My symptoms are all over the map. Today, for example, I went 5 hrs and then 4.5 hr w/o having to pee. Other times I pee every 30 mins.

      I typically void 250-400 cc, sometimes more.

      I don't know if I have a median lobe. My prostate is between 130-175 cc, depending on the scan and who measured it

      Feels like I sit on a baseball .

      I can't drive > 30 mins w/o pain

      I must do something

      I think FLA or PAE offer best outcomes w least risk

      I will probably send my last MRI to Bagla Bhatia and Isaacson and see who I am most comfortable with.

      Quality of life is suffering. I hope PAE can be the answer

      Michael

    • dl0808
      dl0808 TKM

      Posted

      U made a very good point. an enlarged medium lobe that protrudes into the bladder can act like a ball valve or a bar, both blocks the urine flow from the bladder to the prostatic urethra. unless the blood vessels to the medium lobe could be identified then blocked, it could not be shrink. even if it could be somewhat shrink, the blockage remains.

    • MichaelVM7
      MichaelVM7 dl0808

      Posted

      When I am on schedule w/ Flomax (0.4 mg AM and 0.4 mg PM) I urinate well, especially in the day. Flow is slower at night.

      When I skip Flomax, urine flow is much slower.

      During the day I can go 4-6 hours w/o needing a bathroom. But some days (especially if I have 2 cups of coffee), I have to pee 2x/hour.

      My output has been as high as 500 cc, but usually is around 320 cc. My PVR is between 55 cc - 85 cc.

      So, I am left to wonder: if I had a large protruding median lobe that blocks the bladder neck would I be able to urinate as well as I can because of Flomax? Flomax only relaxes the muscles around the urethra - it doesn't relieve obstruction.

      I suppose I can try to find my MRI report to see if it mentions that.

      I don't know if FLA targets the median lobe. I can ask Dr K that question.

      Michael

    • MichaelVM7
      MichaelVM7 TKM

      Posted

      Thomas,

      After your failed PAE in 2013, did you have another procedure? How are you today?

      Thanks,

      Michael

    • MichaelVM7
      MichaelVM7 gene97713

      Posted

      Gene,

      You just said something that never dawned on me: "depends how fast the vessels will grow back."

      If they do grow back, that would seem to ensure the need to repeat PAE at some point.

      The only procedure that would never need to be repeated is probably radical prostatectomy. But that is a last resort for BPH.

      Michael

    • derek76
      derek76 MichaelVM7

      Posted

      As far back as 1995 a urologist told me that now we would never now do a radical

      prostatectomy for BPH.

    • MichaelVM7
      MichaelVM7 derek76

      Posted

      Derek,

      I don't think insurance would cover RP for BPH. A partial resection (cutting out the inside of the prostate, or a TURP with a scalpel) would be covered based on CPT codes.

      But even that is a last resort as it is major surgery.

      If I had a Gleason 7 or 8 tumor, I'd schedule RP. But there are other options for prostate reduction short of major surgery.

      Michael

    • MichaelVM7
      MichaelVM7 TKM

      Posted

      Thomas,

      Are there only select medical centers that will treat a median lobe with PAE?

      Perhaps over time IRs have figured a way to target the ML that was not known in 2013?

      Michael

    • TKM
      TKM MichaelVM7

      Posted

      Michael,

      I read about a PAE procedure to block arteries to the median lobe in one of the discussions on this Patient web site, but it would be difficult to find it again. I vaguely remember it may have been Dr Bagla, in VA. The best thing to do is call some of the doctors and ask them if they do it. The person named gene97713 posted something in this discussion that sounds like he had the procedure and it worked for him. I asked him about it but he has not replied.

      Thomas

    • dl0808
      dl0808 MichaelVM7

      Posted

      these are good numbers. ur symptoms seem to be mild under the control of flowmax, which seems gives u no side effects. just curious why do surgery.

      From other threads, i noticed that Gene seems to have a lot of experience in PAE, well read and knowledgeable. u may be interested to check out his other posts for more info and also more Q&As in those threads.

      statiscally, there bound to be success and failure of PAE and will be reflected in the replies u receive. papers on clinical trials will give u the statistics as well as complications. if u have identified PAE is what u want, i am wondering why u are hesitating and what type of further info u are looking for.

      according to gene's post above, the durability of PAE seems to be not well established yet. something to think about.

    • TKM
      TKM MichaelVM7

      Posted

      Michael,

      I have not had another procedure. I stayed on .4mg dose of Flomax, and in 2016 I started double dose of Flomax .8 mg. In May 2018 started CIC . August 2018 I stopped Flomax and was OK with just CIC. In October I went on a 3 day trip so started .4mg Flomax again, and was able to dribble out about 100mL of natural void which was helpful while traveling because CICing could be put off.

      I am now looking for another procedure, and considering Urolift for enlarged median lobe, however the metal clips interfere with MRI images, so need to find out more about that. I am also looking into Rezum. Also considering a second PAE for enlarged median lobe.

      Thomas

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