Options: Wait, PAE or FLA or Gat Goren procedure or perhaps PEMF
Posted , 18 users are following.
Hello all, I'm 54 years old and I've had BPH for 12 years. Up until the last 6 months, things were annoying but not so bad. Recently, I've been peeing very slowly and retaining fluid etc... I can't say things aren't horrible but now I'm getting up more often at night. Mostly once but twice a lot... I'm not complaining after reading about guys on this site who get up 6 to 8 times a night. my change has been mostly with the stream... I had a flow test and the qmax was an 8. My Uro said im peeing like an 80 yr old man...I also had a ultrsound recently and I have a large median lobe and the prostate was about 55 grams. He said my median lobe was like a ball pushing up into my bladder and bladder neck... Anyway, I've looked at all the procedures that I could find not wanting to take any of the drugs. My Uro was pushing rappaflow and finisteride. I want to do something now before it gets a lot worse because I know it's headed there. I'm interested in what everyone has to say. I've looked at the Gat Goren procedure and to be honest, it seems to have solved the underlying cause of BPH. The backflow from spermatic veins into the prostate makes a lot of sense as the cause for the enlargement. The problem is it doesn't look like anybody besides Gat Goren is doing it and it's very expensive. I've been reading about since 2009 and the treatment hasn't taken off around the world. I have no idea why. If I had the 20 to 25k. I think I would do that but given my not so horrible codition right now and my lack of funds for the operation, I can wait until it's more widespread(which may never happen)or consider something else. I checked with Dr Bagla's office recently and the PAE operation will be covered 100 percent by my insurance, so I'm leaning in that direction. FLA looks fantastic. No blocking anything off, no beads just precision ablation with minimum side effects...But it's 20k... Now there's another treatment on the horizon..PEMF.. It looks promising but years away. So, I'm leaning toward PAE and I figure I can still do one of these other treatments in the future if it doesn't work out or lasts only a few years... I'm pretty sure doing PAE doesn't preclude any other type of treatment in the future...like the Gat Goren procedure or FLA...My gut feeling is I should get the PAE done now even though I'm not as bad as other guys... But, I'm obviously not sure.
1 like, 40 replies
j12080 tgt111
Posted
You should no matter what you decide, call and discuss with Dr. Karamanian. You can tell him that you are deciding all the options and he will discuss all of them with you. He will talk as much as you can and you will get educated on a lot for no cost as he will not charge you. The large median lobe can become an issue if you start retaining and you tribeculate in your bladder. You need to find this out as time is your alley with regard to the bladder.
Good Luck
John, I will now pm you.
stebrunner tgt111
Posted
Hi, TGT,
Like you I have a large median lobe pressing into the base of my bladder. Last June I had a PAE done with the hope that it would stop the growth of my prostate and make it easier for me to self cath (CIC). The doctor who did the procedure told me that my median lobe shouldn't be an issue, but I suspected it would after reading other posts on this forum. My results weren't stellar, but PAE did help make CIC easier.
Several uros suggested going the drug route, but I'm not a fan of medications. One of the drugs they recommend can cause floppy iris, which will make cataract surgery, if you ever need it, difficult. By going with CIC, I don't need to use drugs.
You mention having a slow flow rate, and again I would make sure you are not retaining urine. If you are, learn and start CIC now. In 2015 I had a slow flow rate, but I didn't worry because I thought as long as urine was coming out there wasn't a problem. I thought I had prostatitis, but a CT scan revealed I had an extremely distended bladder--and they drained out 7,000 mls! I had been retaining urine for some time, but it happened so slowly I didn't feel any pain. And I always felt like I had emptied my bladder--I was so wrong!
Before deciding on a procedure, I had to make sure my bladder tone was strong--and it wasn't. All the uros I talked to said their procedure would allow me to urinate like I used to do--but when I pressed them on the odds of that happening for me, they back peddled big time.
I don't regret going with PAE--and my insurance wouldn't cover it. Right now I'm good with CIC. It's allowing me to live a normal life. In the future I might go with FLA, as you said it's pricey right now. Since your insurance will pay for PAE, I'd really check it out. Just know that your large median lobe might affect your results.
Stebrunner
oldbuzzard tgt111
Posted
kenneth1955 tgt111
Posted
Good morning TGT. Sorry I'm so late getting back to you I had to look up The Gat Goren procedure which looks good but it is not done in the US. If the median lobe is the problem try a Urolift first they can pin it away from the bladder and open you up. There is no side effects for it and if it don't work go for the PAE or FLA REZUM is good to but there have been alot of men on here that has had it done and they ended up with Retro Ejaculation. I don't know at 54 do you what to deal with that side effects Take care and good luck Ken
oldbuzzard kenneth1955
Posted
Not much RE from PAE or FLA from what I've read.
tgt111
Posted
I spoke with Dr. Bagla. He said the large median lobe wasnt an issue. There's a lot of guys with large median lobes and I'm sure they're a high percentage of PAE patients. So I assume it still works on most of them. I'm also thinking the Dr has probably gotten better at the operation...I hope lol. I know there's still failures.. I'm going to check into the FLA procedure also. I like the science behind it and it seems to be very accurate. I think it might edge out PAE as the best procedure but the cost is high right now. Adding to my original post, I have moderate retention at this point with a thickened bladder wall.
anthony2858 tgt111
Posted
I am in the same situation as you, been considering PAE as well as FLA. Had a nice conversation with Dr. K and he totally believes this is the for BPH.
I got all of the ins codes from his office and called my ins company, they cover 80% of the actual procedure which is the lions share of the whole thing. All in all my ins covers about 50% of the total of a bill that is around 28K when then bill to ins. (20K if paying cash). So probly worth a shot at getting those codes and run them by your ins co.
Good luck with your decision, personally i feel the PAE is not enough for guys like you and i, cheaper but dont throw away money.
One last thing is, I feel that our problem is 2 part, BPH and a bladder that wont push. Gonna have to work on both to get any kind of decent results. And from what i am hearing on this site is the only way to give your badder a chance to kind of recondition is by CIC. (Self cath.)
Anthony
Howard31850 tgt111
Posted
Hi tgt111. I would like to relate my experience with Gat Goren (GG), PAE, FLA and waiting to you. I followed GG for several years and decided a year ago to do it. Dr. Gat requested several tests to qualify me. The ultrasounds showed that my prostate had grown from 150 gm in 2011 to 280gm last year. This disqualified me as he would not treat prostates over 150 gm because he said it takes too long for the GG mechanism to shrink the prostate and by then there could be kidney damage. I also had a cystoscopy which showed no median lobe - just really large side lobes. Dr. Gat also will not treat prostates with large median lobes as he says his method does not reduce median lobes.
Priot to this time I have been on alpha blockers (uroxatral) and Avodart for many years and watchful waiting as well as lots of biopsies due to high PSA because of the large prostate - all negative.
Last August I had PAE at UNC. Dr. Isaacson said I was the ideal candidate due to large arteries. Indeed the PAE was a great technical success but a clinical failure in that my IPSS score has remained around 26. But it did reduce my size to 180gm.
After that as my symptoms worsened I learned to do intermittent cathing (CIC) with the help of jimjames and others on this forum. This has been a real lifesaver because it has given me time to explore other options and avoid my uro's knife. I highly recommend it to you.
Recently I met with Dr K in Houston who performed an in-bore MRI on me to check a lesion which showed up on my MRI last Fall and was described as "likely cancer". It turned out ok (whew!) but it gave me a chance to discuss FLA with him for my severe BPH. I learned about Dr. K from John who had great success with his FLA in Dec. It does seem a viable alternative to the tranurethral medieval procedures offered by the uros and I may do it in the future.
But for now I have been looking again at GG which treats the cause of the BPH. All the other methods just treat the symptoms and may not last long. GG charge a small fortune for heir procedure which is now done in Cyprus after the urologist lobby drove them out of Israel (they are IRs). But I did find a VIR in New York (Dr. Goldstein ) who performs the same procedure. Also there is another one in South Florida and I currently plan to visit still another VIR in Detroit regarding GG. I do know one fellow who had his BPH "cured" after 13 months.
The key to getting GG covered by insurance is to complain of varicoceles ( and infertility). I have suffered from these "bags of worms" for many years so that is easy. GG showed over many hundreds of men that BPH was associated with varicoceles 100% of the time so if the varicocele is fixed the BPH will eventually subside since its fule source is cut off.
But since GG takes so long to work it is important to protect your baldder and kidneys in the meantime and that is where CIC comes in.
Hope this helps and good luck.
Neil
tgt111 Howard31850
Posted
Neil, Great information. I really appreciate it. I agree that the GG procedure looks like it fixes the actual cause, not the symptoms. What I don't get is that it's been around a while now and other than the few Dr's you mentioned, it's not around. I thought when I read about it years ago that the world would be doing it by now. I have a little bit different situation from a lot of guys in that my flow is weak but my prostate is about 55grams. I'm thinking maybe give PAE a shot first...all paid by insurance and maybe it'll last a long time before I possibly have to try something else.... If it shrinks down to 40 grams, I should be ok. I hope... I'm not committing to anything right now. I'm going to talk to Dr K.... and maybe look up those GG Dr's you mentioned. Thanks for sharing and if I learn anything new, I'll do the same. What a great resource this is.. My uroligist is a boob. I knew more about the newer procedures than he did... There's no excuse for that in my book...... It's all business for these guys, that's the downside of dealing with doctors. Thanks again Neil, Tom
Howard31850 tgt111
Posted
I too wondered why the GG procedure was not universally accepted given its good results. Then I realized it is in fact already universally performed by most infertility IR doctors.
The GG is the standard procedure for varicoceles with the addition of doing bilateral sclerotization and sealing any collaterals which open during the procedure (already done as a matter of course unilaterally).
So really there is nothing new for GG to offer. Instead we just have to convince the IR to do both sides and that is all.
Again it is up to us do our homework and know what to ask for from the doctor.
Take care
Neil
j12080 Howard31850
Posted
I am not interested in going out of the home land or Canada but if we can get it here in North America, I may be in. I do know that Dr. Karamanian is honest enough and helpful enough to tell me all he knows and feels about this, have you ask him for any comments on the procedrue? I had to have FLA now for relief. I could not make it any longer so this was well worth it but I hope and know this is not the end all. Wish we had some more solid clinicial trial work here in the states on this GG.
Also, glad to hear you are well now.
Jonn
Howard31850 j12080
Posted
Hi John - great to hear from you. I did discuss GG with Dr. K when I saw him and he did not disagree with me that it was worth a try to turn off the source of the fuel inflamming our prostates if GGs theory is correct. But he said he did not have the expertise to perform it otherwise I would have it done by him while in Houston.
I have asked Dr. K if he could recommend some IRs for me but he has not returned my email. I think you were too successful in promoting him and now he is too busy!
I hope to hear from a highly regarded VIR in Detroit early next week. I sent him all my records and what I want done so hopefully we can see him for a consultation.
But if he refuses to do the bilateral procedure I will go to Dr. Goldstein in New York if he hasn't retired yet. He agreed 2 years ago to do the full GG procedure on me. Then there is the vascular clinic in South Florida where I know of a fellow who went there and was cured of BPH after a year. I wrote them last week but have not heard back.
So I'll keep y'all up to date on this. I hope everyone follows your good recovery with their FLA.
Take care.
Neil
Riggs Howard31850
Posted
Hi Neil, any luck finding a US doctor to do the GG procedure? . What was Dr. Goldstein's contact info, as there are several. Dr. Goldstein 's in NY. thank you! . Steve
j12080 Riggs
Posted
I am doing very well since my FLA of last year and I am happy. But I also know that none of the treatments offered are a cure for BPH. NONE. So, the clock is ticking and I am going to hope and pray that Neil find a way for us all. He is a good man and he will keep after it.
I will let you know what I find out. But, I can tell you for symptomatic relief, the FLA was fantastic. I got my life back.
tgt111 j12080
Posted
Neill posts a lot on another forum: Healing well. He just posted more information about a Dr he found in the Toronto area. You should check his posts out on that site. Maybe he'll update on this site.. He is doing us all a great service with his research.