Recommendations for someone living outside the US

No, Lester.  I'm in the researching phase now.  I've had nothing done except medications, which I can't stand because of how woozy they make me feel. 

Read the Rezum thread here:

https://patient.info/forums/discuss/rezum-have-you-had-this-done--499675?page=72&utm_source=forum&utm_campaign=comment-notification&utm_medium=email&utm_campaign=Patient%20Access%20EAP&utm_source=sendgrid&utm_medium=email#3185566

It has 3000 replies so may take you longer than the procedure itself We also have a urologist who posts in that thread, JerseyUro, who takes questions from time to time.

Jim

I had Rezum done a little over two years ago and am reasonably happy with the results. IF diagnostics confirm that your prostate is the main reason for your symptoms, I think Rezum is your best bet, sight unseen. There are almost no reports of catastrophic problems (impotence/incontinence) that while rare, can occur with Greenlight and Turp. or even temporary occurrences of them (Holep) with Rezum. It works on most men (if the prostate is a main driver, probably in excess of 90% success rate), and the worst issue is Retro ejaculation which probably happens 5-10% of the time. It can be aimed specifically, so median lobes are no problem and can be treated successfully with it.

Recovery can (but doesn't a;ways) take awhile, but most are functioning well enough to go about their lives within a week or so, less than that if you're comfortable with self cathing (CIC).

Thanks for the great info buzzard.  Do you mind IMing me the doctor you used and the cost?

There is a doctor McVary in Chicago that someone posted about today. The doctor sounded very thorough and he had a good result. If you go to the Rezum website, you can find a Rezum doctor by location. Maybe there's one just over the border.

Jim

Hi Paul5555- I'd recommend your not looking at FLA as you have a very small prostate. The FLA has worked wonders on most with large prostates, but has not done so well with men with smaller prostates, myself being one of them. I had the FLA in July of 2017 and my results were not good. There are, I think 5 of us that have not done well, and we all have a similar profile with prostates smaller than 50 cc. [ A 6th was Mike588, but he has a large prostate. Unfortunately for Mike, he is, I believe, the only guy with a large prostate that has not done very well with the FLA.] Mine was 43cc pre- FLA. Joe and his brother, Jim, Motoman and myself have not had great results and all have a similar profile as far as prostate size.  I have heard that Dr K has done about 25 FLA's for BPH thus far [I could be wrong in that] and the great results were had by those with larger prostates. BUT, in having said that... if the main cause of your problem is a cyst at the bladder neck, there is at least one guy [with a smaller prostate] that had a great result from the FLA. And again, he  had a cyst at his bladder neck causing his main obstruction. So if you wanted to consider the FLA, you'd need to have an MRI done to see what the cause of your obstruction is. Dr K would be happy, I'm sure, to have a look at your MRI.  Dr K is a good man, always there for all of his patients. And of course, jimjames has already give you the best general advice for discovering your problems as well. Cheers- J

 

Jay,

First, thanks for the nice shout out. I understand the current thought that FLA works better on larger than smaller prostates. While the concept is interesting, not quite sure we have enough patient data to draw such a conclusion. Also, there may be other conditions that coexist with smaller prostates that could be the reason. Enough speculation! But what I'm curious about is did Dr. K. make this association, or is it just an idea floating around here? And if he did make the association, it might be instructional to hear why he thinks that's the case. I'd also be curious if he's accepting men with smaller prostates, because for example Urolift docs generally dissuade prospective patients with large median lobes.

Jim

Hi Jay, Thanks for the clarification. And while an interesting speculation, I think it's just that given the very small patient population and lack of access to patient's prior medical records. Dr. K's not saying much also tells a lot. If he really believed that I doubt he would continue to ablate smaller prostates. Hopefully his trial data will shed more light.

What is "apple-coring of some type" ? I would want to know the specifics before somene cored my apple But couldn't you do that after trying Rezum, in other words the least invasive first. You could always follow up with Aquablation assuming Rezum doesn't work, and assuming Aquabltion pans out in the field. I'd give it 6 months to a year before we start hearing more from patients. Did you decide to have urodynamics done? If not, that might be a good first step before choosing a procedure.

Good luck moving forward.

Jim

The other problem with saying that the poor results are because of smaller prostates is  the extrapolation that the procedure always works with men with larger prostates. This is selective Monday morning analysis with a bitt of confirmation thrown in. Unless men with smaller and larger prostates were trialed against one another, with other factors being equal, you just can't make these assumptions and men relying on them can end up making bad decisions. I think it's great Stan is collecting data, but his lay manipulation of the data troubles me. I have counted four poor results so far and someone else counted five. Stan counts only one. Something very off here. Now one can argue that one man's "poor" result is another man's "marginal", but I still can't see where he only comes up with one poor result. Best men use Stan's powerpoint file only as a starting point and then read the actual posts in their own words from FLA patients.

Jim

Jim

Jim

Hi jimjames- I recall you saying something similar to my comment in a different comment string.... about the possiblity/probability of the FLA being less efficacious on smaller prostates. If asked to, I'm sure I could find your comment.

Also, Joe's brother was part of the Dr. K study... so there is at least one failure there. His prostate size was similar to mine.

Here's how I see it, on a very simplistic level. About 25 men have had the FLA for BPH with Dr. K as the surgeon. 5 of those that have had the surgery had a less than positive outcome, and need further treatment/surgery of some type. In one case, Jim, has had 2 FLA surgeries with the same outcome as the first, except now Jim also has retro... What is the common denominator in these 5 men..? A prostate size of about 45cc. Also, Joe and his brother both have retro as well. So, of the 5 failures of men with a small prostate, 3 have retro... Jim, Joe and his brother.

Just using common sense as a guide, if I were new to the BPH Twilight Zone, and I had a prostate smaller than 50cc, I would be quite reluctant to have an FLA with a failure rate that is very high in the smaller prostate arena, no matter what the ACTUAL reason might be. A failure is a failure.  Until results are released on many FLA surgeries [in the hundreds], my advice as an FLA surgical failure would be to look elsewhere if your prostate is less  than 50cc's....  My tendency is to err on the side of caution and look at the stats we have, no matter how minimal. Prostate surgery is expensive and painful.

Of all the men that have posted here that have larger prostates, only one has had a marginal outcome that I'm aware of, Mike588. Bad, marginal... whatever. It's bad if you have to take drugs after a surgery, or must still self-cath, even if only once a day, or twice a week. Any amount of self-cathing after a surgery is a sign that the surgery is a failure. Especially if a year has passed since the surgery and you are still on Flomax, Cialis for BPH, self-cathing, or whatever. That is not a BPH surgical success. 

I did not say that  ALL FLA surgeries on larger prostates will be successful. What I will say though is the odds are MUCH better if the prostate is a larger one. 

ALL we have to go on at the moment is the results men post in this forum. And based on that, I will stick to my conclusions, until more data is available.

Any surgery has a probable outcome for success and failure. 

Jay, well said. But if you err on the side of caution then you have to look at a poor outcome rate of 25% (5 out of 25) which isn't as good as some of the other procedures. The retro rates aren't great either. So my thinking is you have to look at that ratio (5 out of 25) regardless of prostate size until there is real trial data stating otherwise. That is the side of caution. Don't remember what I said in the past on this issue, but for discussions sake, if I said something like "that makes sense", well it make sense in the way we often talk here but it does not make scientific sense. I think we have to be careful here when we switch from sharing experiences and giving advice to analyzing patient outcome data in a way that no trial doctor ever would. There is a reason for double blinded peer reviewed trials. Observation information is interesting, and indeed may be proven true later, but it also can be way off and unreliable. The solution as I see it is to wait for more patient data.

Jim

Correction, that is a poor outcome rate of 20%, not 25%. I guess CIC affects numerical calculations

Jim

@Jay: Of all the men that have posted here that have larger prostates, only one has had a marginal outcome that I'm aware of,

--------------------------------

What if the men with larger prostates also had another condition and it was that other condition that precipitated the poor outcomes. I don't know what that other condition is because I don't have all the patient data, nor does Stan. Or what if it's unrelated to prostate size totally, and you're just retrospectively analyzing a small sample base? I don't have the answers, and I don't think Dr. K. has the answers or he wouldn't have said nothing when asked. Again, great to put the theory out there, but it's just a theory and I would hate men with larger prostates going into a procedure thinking that they have a 96% chance of success (24 of 25) when the only hard numbers are 80% chance of success (20 out of 25). Now 80% isn't bad but arguably no better than Rezum or Urolift, for example. And then there are the retro figures. Just not enough data to make conclusions yet.

Jim

Hate being in that group of 5 plus. Plus I'm in the group of 3..lol...

Ok jimjames... I totally agree with you, mostly. [Is that still 'totally"..?]

The reason I had the FLA originally was because of this forum. I just think this forum has a lot of power and anyone that's considering the FLA because of this forum should hear the latest 'innuendo', whether postive or negative, or conjecture, to help them make their decision. All of the limiting factors cannot be known for any procedure. If all was known, there would be a 100% success rate. No surgery that I'm aware of has a 100% success rate...

And again, you're right, no conclusions can be made yet. The only 'conclusion' that can be made is 'Should I have the FLA, or something else'..? Since MANY make their decision on this relatively new procedure based on this forum, it's better to have as much information as possible. 

If I had known that 5 guys with a prostate profile like mine had not succeeded [in a pool of about 25 guys total], I probably would not have had the FLA. It's expensive, there was quite a bit of pain afterwards, and I had to fly all the way around to the other side of the earth.  

Cheers- J

Well said Jay. It's good of you to warn others, even with limited data available. Hank

Jay,

Yes, knowledge is power and it's also a responsibility. Forums like this work by airing all points of view, Shared experiences like yours will help others make better decisions. Like you say, nothing is 100% guaranteed except maybe that we're all getting older   "Mostly" is close enough to "Totally". Anyway, I'll take it Like Hank said, "Well said".

Jim

One more little note... If I had a large prostate that caused BPH... based on the limited data available, [personally] I would still consider the FLA as a 'first go' surgery... With larger prostates the limited data shows huge promise... so far. Not a 100% 'guarantee' at all... but very hopeful. Cheers- J

I would agree but qualify with "if money is no object" because it's a hell of a lot of money to fork out. With Rezum and other procedures having similar success rates - maybe higher rate of Retro with guys with large prostates but overall more likely the obstruction is removed - being covered by insurance makes me lean towards one of those rather than do another FLA ... on the other hand I don't have retro so am happy for that.

Re my relatively poor result, we'll not know until I try something else, could be I have so much damage already that this is as good as it's going to get with whatever procedure.  On the other hand if I don't take Flomax I start to feel blocked up so logic says the obstruction was not removed.

Me too Jay

Jim

Mike I believe my obstruction was removed the second time around. But I still have to take 1 flomax a day. Hoping my new uro can help me out.

Jim

Jim did you have a second FLA ? How long ago, and if obstruction was removed why do you need Flomax ? What symptoms do you have with no Flomax ?

Would you still feel that way if the next 4 or 5 men with large prostates had poor FLA results? Because remember, the first 4 or 5 men with FLA had great results, but then came some poor results. Someone may have thought then (and I think some did) "Hey, 4 out of 4 is pretty good, I think I'll do it". This is the problem with such a small sample size. Chance plays too much of a role. The other point is that this is all observational as opposed to RCT (random control trials) science. There's a reason they have RCTs and peer review. More patient data. More apples to apples. Less bias.

Jim

Hi jimjames... nope... I would not feel the same at all if the next 4 or 5 men with large prostates had poor FLA results [for BPH]... With the limited data we have, that would sorta be the end of 'belief' in the FLA procedure for BPH, at least for me anyway. Personally, if I had a large prostate causing BPH  at that point I would go with a procedure that has been documented over a period of time.

Cheers- J

Good point Mike... about the "if money is no object"...

Cheers Sir....

More important, best moving forward Jay! I would take ample time being comfortable with a diagnosis before trying another procedure. Have you had urodynamic testing yet? It should help tell you what to expect with another surgery. There is also something called ''trial by stent" although unclear how accurate it is and who does it. The stent they use is the Spanner. It's temporary and inserts like a Foley but you void naturally with it. Supposedly it simulates a prostate reduction surgery.

Jim

Jim

"If money is no object" you could just have a portable loo follow you around in your spare Rolls Royce

Yes I did have a second fla. Had a obstruction in the bladder neck. I believed it was removed. Haven't tried to guit flomax all the way. Was taking 2 flomax now one. Not much trouble during day just night. Can barely go in the evening which causes bladder pain. Going to uro hoping to figure it out. Could still have obstruction but flow has been better most of the time. Not sure what the problem is. Been taking cipro thinking it could be prostatitis.

Jim

Been about 4 months.

Jim

Been taking flomax mostly cause of bladder pain.

Jim

Jimjames can you tell what is urodynamic. The procedure.

Jim

Urodynamics is a very general term but the usual application is an in-office procedure where they put a thin catheter into your bladder and an even thinner probe into your rectum. Then then start filling the bladder with sterile water or saline until you feel the urge o void. You then void the fluid and they measure not only the post void residual (PVR) but also the flow rate and pressure exerted by the detrussor muscles. The probe in your rectum measures how well the voiding nerves are working. All this is computer recorded and in general you get one of three basic diagnosis: 1)Low detrusor pressure and high flow rate (unobstructed);  (2) High detrusor pressure and low flow rate (obstructed) and; (3) Low detrusor pressure with low flow rate (poor detrusor contractility). This info is invaluable in helping to determine how well a prostate reduction surgery may or may not work. You cannot get this type of information from imaging be it ultrasound, 2tMRI, 3TMRI, anything. The gold standard of urodynamic testing is called video urodynamics where the whole process is video recorded with even more measurements taken.

I didn't know about video urodynamics at the time so I had the regular procedure. It was painless, not  particularly uncomfortable and I think took around 20 minutes. Probably the most important test to take prior to a surgery IMO.

Jim

Let me correct that a little, as I was doing this mostly from memory. The rectal probe helps with bladder pressure measurments. An additonal patch or patches measures electrical conductivity to see how well your voiding nerves are firing.

Do most uro do it? Is this test commen.

Jim

I would say it's common for qualifying someone for a surgery or procedure.  Video urodynamics is less common and usually found at the major medical centers. But not all urologists do even the basic urodynamics.  Some use something called UroCuff which is non invasive and also collects some bladder pressure data.

Jim

What is UroCuff?

Yep... from what I've read in the past the stent often causes a UTI... And also from what I remember, it's always causes  retro... good for short time use.

Sort of like a blood pressure cuff but fits around your penis. As you void they apply progressively more pressure until your flow stops. This correlates with bladder pressure. Non-invasive so no catheter or anal probe. Useful but not as much info as the more elaborate set up.

Jim

sounds troubling - good luck let us know when you find out what the issue was/is

Michael

Jay: I am one of the 25 that had a very positive result. My prostate size was 50 grams and I am going on 76 years of age. From what I can conclude, ...those that have had a history of prostatitis have a poorer outcome with FLA especially if they were on a catheter for a long time prior to the procedure. I have always had a strong libido and rated the highest on that part of the questionnaire that needed to be filled out by Dr. K. ...After the procedure now going on 5 months, I find my libido even stronger, no retro and a strong flow having urinated a full 12 oz last week while before 4-5 oz was normal. Only side effect was a less ejaculate, an outcome that might be expected when 35% of your prostate is removed. Perhaps my success was a result of never having prostatitis and a PSA that normally measured 0.7.

Sorry to hear you did not have success and appreciate hearing your story for the benefit of others.

 

I agree Jim the group of 3 is not a good spot to be in lol.

Hi Martin... happy to hear of your success.That's a good point that you bring up, about the prostatitis being another symptom to consider. It's possible that the combo of smallish prostate and prostatitis would have deleterious effect on the outcome of the FLA. Thanks for your input. Cheers