Discussion of BPH Treatment Results
Posted , 7 users are following.
Lets put the discussion here and leave the thread BPH Treatment Results free of discussion so we can easily spot the results.
Does anyone want to volunteer to anaylze the results?
The other discussion is here https://patient.info/forums/discuss/bph-treatment-results-564488
We understand that everyone is different and probably the majority of people on this website are unhappy with their results but I'm hoping that we can learn something from a scoreboard.
0 likes, 19 replies
jimjames jjjj57989
Posted
Thanks for opening the new thread.
It would also be great if those that posted their results on the other thread could come back and elaborate a little more, especially on their prior history. For example, what was your PVR? Did you try drugs like Tamsuloin first and what were the results? Did you have a cystoscopy or urodynamics? Ever had acute retention and needed a catheter?
And per the other thread, it might be useful to quantify the “before” the same way you did with your procedure using “a, b,c,d”. Before and after IPSS scores would be even better.
https://patient.info/forums/discuss/what-is-your-international-prostate-sympton-score--453484
Jim
jimjames jjjj57989
Posted
Following is a quick tally/summary to date. Keep in mind that the results are very subjective. For example, TURP does very well -- A+,A, B -- however assuming the men had retro which is usually the case, other men might have rated the same procedure, with the same results, much lower because of the retro.
For someone(s) with more ambition, I think an analysis of the specific threads dealing with PAE, Urolift, REZUM, etc, might bring us a broader data base to look at.
My overall observation is that most of the procedures seem to be around 50/50. Half reporting very good results. Half reporting failures. I think a lot of this has less to do with the procedure itself, and more to do with how well the physcian screens the patients for the procedure. For example, someone with a flaccid (stretched) bladder and a large median lobe cannot expect the same results as someone with an elastic bladder and no median lobe. Doctor's should be screening more for these things but it seems that many of them just want to operate first and deal with the failures later.
PAE
A+
B
F
(D to F) then B+ after taking Cranberry extract
GL
B+ (e)
A
F
F
F
D
Urolift
F
A-
A
F
TURP
A
A+
B
Itind
D
CIC
A-
A+
REZUM
B-
Tamsulosin (Flomax)
C+
D-
C+ (with Fernasteride)
jjjj57989 jimjames
Posted
Turp, Itind and Urolift had at least half A's. So it seems like there are alot of people with good outcomes active on this forum.
Yet PAE, which is the most discussed on this forum had 1 F and 1 D out of 4 reports.
Thats 50% of this limited sample.
I think that says something about PAE.
richp21 jjjj57989
Posted
Hi jj,
I would be careful about generalizing about PAE from 4 reports. I recall some months ago one poster had analyzed the posts in the very active (over 1600 posts) discussion that Chuck P had started, https://patient.info/forums/discuss/has-anyone-out-there-had-a-prostate-artery-embolization--301859
and had arrived at a very different conclusion. I will try to track down that post and will copy it here if I am able to locate it.
Rich
jjjj57989 richp21
Posted
You might be thinking of a similar post that I did about a year ago. I went over all the PAE posts and concluded that most people liked the results.
That led me to have a PAE which did nothing for me.
It seems like there are more negative PAE posts recently.
richp21 jjjj57989
Posted
Thanks for saving me for looking for the post! (I did some preliminary searching and came across multiple posts reporting the PAE success rate in studies at 80%.) I agree that recent posts seem somewhat more negative, but it's a relatively small data sample.
Do you have a way of locating your post from a year ago? I believe you quoted numbers, and that would give us an idea of how much data you looked at at that time.
jimjames jjjj57989
Posted
As they say, "beauty is in the eye of the beholder", and so it seems with outcomes.
Personally, I wouldn't term any outcome "good" if I was left with permanent dry orgasms, but it appears that our sample of three who had TURP did.
Given that none of these procedures can be reversed -- even Urolift has a permanent fixture -- I think we all should give ample thought as to whether or not we are ready to take the plunge. I guess that's why I chose self catherization (CIC) as it not only produces results as well as the best of surgeries, but is also totally reversible any time you want. Of course, while overrated by those who haven't done it, there is the inconvenience factor proving again there is no free lunch.
As I mentioned in I think another thread, now is the best of times and the worst of times for those looking for solutions to LUTS/BPH.
It's the best of times as a new generation of less invasive procedures are coming onto the horizon. But it's also the worst of times because there seems to be an irresponsiblity on the part of both equiptment manufacturers and doctors to rush these procedures onto the market without adequate patient screening and informed consent.
Until things are more refined, or we get more data, watch n' Wait, if you can afford to, has never looked better.
Jim
jjjj57989 richp21
Posted
I just did a quick look but couldnt find my post recapping PAE results.
Recently there's been alot of discussion of researchers playing around (hacking) with their studies until they get the results they want. There are groups out there now who try to replicate the published results of scientific papers and they're finding many many studies results cannot be duplicated.
I have no information about PAE studies being hacked but I'm skeptical of all published results. Think about it, the study is most likely done and paid for by people who profit from a positive result to the study.
now I'm genrally skeptical of any published results.
There are many instances where results cannot be duplicated by an independent study.
richp21 jjjj57989
Posted
Do you have any info on the groups who are trying to replicate studies and are unable to duplicate the findings, or the instances where this has occurred?
I too am very leery of the possibility of engineered results, but I certainly don't want to throw out the baby with the bath water. I think it all needs to be examined closely, which I'd why I curious to see specific info about this. Thanks!
jimjames richp21
Posted
Hi Rich,
You can start by googling a Stamford Study: "Re-analysis of clinical trial data can change conclusions, say researchers". Or try googling "hard to replicate trial data". Of course, since these studies conclude that so many studies are wrong, they may be wrong as well
Jim
richp21 jjjj57989
Posted
Found your earlier post. Here's part of it:
Just now I reread alot of postings by men who have had PAE and tabulated their experiences.
15 of the men love the results they achieved from PAE.
3 did not see improvement.
4 had negative comments ie: allergic reaction to the beads, serious retention post PAE, UTI, pain at the incision point. I'm not sure how many of these men eventually got good results from the PAE.
This is about what I expected from browsing the forums, about 2/3 highly satisfactory results.
And only raves for the drs. and staffs.
richp21 jimjames
Posted
I'm assuming from the titles that the articles are about this issue in general, which I am very much aware of. Are there any articles about this problem specifically with PAE studies?
jjjj57989 richp21
Posted
So 15/22, thats about 67% positive, 33% not.
On our current thread we're showing 50% positive 50% not. Very small sample size.
What bothers me is that there's no information about why failures occur. I spoke to Dr. B. twice as my symptoms returned, he had no curiosity about what happened to me. No suggestions of any disgnostics, nothing.
And I haven't seen anything published about post-pae care ie: when to resume exercise, how to maximize results.
This makes me skeptical about PAE results.
jimjames jjjj57989
Posted
I'm running 50/50 on a sample size of 15. I put the names next to the results (see end of post) so that if anyone else wants to carry on there won't be duplications. That said, 15/22 even if accurate begs the question, why so many failures.
As I've said before, I think the answer lies in many cases in the the pre-existing condtion of both a patient's prostate and bladder, More thorough testing, including urodynamics, should be able to identify outcomes better in advance, however that does not seem to be the case.
It's disturbing that Dr. B. had no curiosity about your result because curiosity is the first step to coming up with a solution. It shows interest.
FWIW I've run into this with all my urologists. You either fit into their treatment paradigm or you don't. And if you don't, they really don't seem very motivated to help you any more.
When I look around my urologist's office, I see a treadmill. Patients coming in with problems and patients going out being offered the same surgical solutions with not the proper regard for their individual condition.
I guess it's not just urologists but IR's as well.
Jim
BAD
chuck P
bob 120
arlington
fj20848
jjjj57989
kmd46521
GOOD
caringbah
gary1954
les3178 (at 7 DAYS)
OZRURAL
FRANCIS 19873
hungupdown
bil80656
Inconclusive
ed70868
jimjames richp21
Posted
I don't know if PAE studies were part of these groups or not, but I think if you read some of the articles I directed you to, you will see that the underlying principles can apply to almost any study.
Not against PAE per say, and if I needed to have a procedure right now it would be on my short list even with what I consider a high failure rate. However, if I could still reasonably watch n' wait -- which I can -- then that is what I will do until I have more info/confidence in the current crop of procedures.
Jim
jimjames
Posted
Additions to my PAE ratings post from 2 days ago...
Heard from "les3178". Results still GOOD.
joe74831 from a recent post...it would be BAD
jjjj57989 jimjames
Posted
jimjames jjjj57989
Posted
JJJ,
I thought you wanted the "results thread" for first person only reports, but feel free to migrate anything over of mine you think pertinent.
Jim
Motoman jjjj57989
Posted
I don't see any A's for Itind, only my result which was D. The A's were for CIC.
There are two other people on this forum that I know of that had Itind in the study. But they have not returned since the procedure. Maybe that means they had a good result?
I am also of the belief that the results are skewed negatively because of that fact. If you had your problem fixed, you are less likely to hang around this forum. So more negative outcomes on the forum.