Going with Focal Laser Ablation for BPH

Yeah it's a tough decision. If you have any questions please ask as I've had fla about 4 months ago with Dr. K...Great guy

We give the our E-Mail addresses when we register but filtering out posters is too big a job for the moderator to do. Some posters are probably Trolls. I have reported some at times but few get deleted. Ask some to verify their wild statements and they don't reply.

Google a prostate problems and  questions to this site usually spring up. first . 

I disagree.  Lots of sites take polls and get useful infor.

Regarding your points:  

We don't have to filter out posters.  Just because someone didn't post doesn't mean they didn't have a procedure and maybe have useful infor.

If the forum is archived, as most modern systems are, it shouldn't be too hard to extract unique email addresses.  That capability might already be programmed into the forum software.  We won't know until the moderators respond.

If we ask straight questions ie: did you have PAE?  Did you have FLA?  3 months ago?  6 months? Are you very satisified?  moderately satisfied?  Are you taking meds? etc etc.  Trolls might find the survey too boring to bother with.  Plus they don't have the option to give strange responses.  Maybe they could say they had every procedure.  That would stand out

The moderators should consider that mining their forum for such useful data would be a marketing advantage for them.  I'm sure many new members, doctors, pharm companies would love to see the info.

 

Yeah maybe the insurance company's will take note and cover fla...

Hi JJJ,

I find the site incredibly useful and educational, in spite of, and probably in part because of the anonymity of the contributors. The other side of anonymity, is that allows people to be perfectly candid in a way they might not if their identity was known. If you want to know more about a person, or have doubts, it's really not hard through either a little historical research of the person's postings or PMs, to get more information, or even establish a personal contact if that is what you want. This has been mentioned by some lately in the FLA group, but it's nothing new and goes on all the time in all of this forums. 

The one thing I would like to see, however, is a much larger "profile" allocation. Right now, I think you can only do a short paragraph, which isn't nearly enough room to detail your clinical history. Pretty useless actually, and no wonder most don't even fill it out.  A larger profile allocation -- at least a page -- would allow you to see a member's clinical history in one space, rather than wading through dozens of old posts and asking questions. 

I have made this suggestion to the moderator a couple of times. If anyone agrees, you might want to suggest it as well. Just PM or contact the moderator. 

Jim

Someone a while back tried a thread requesting only what procedure you had and how you rate it. The thread off the rails in short order. It turned into just another discussion thread. Too bad it didn't as the thread started had hoped

I had made a try at it.  The problem was that no one read the original post which stated the idea and goals, they just looked at the latest post and posted their stories as usual.  I tried, for a while, to keep it on track.   One guy said 'Who put you in charge? Are you someone important?'.   I gave up.

Most forums have some kind of polling or survey function.  I wish we had it.  Right now I'm starting to see posts about  FLA failures but I can't get a grasp on how many there are and if there is any commonality.   It would sure be nice to know. 

As to your example, of FLA failures, it will take an hour or so of reading the FLA threads to find that but the information is there. An hour well worth spent btw. And back to my previous post on the subject, going back to the original threads and poster comments will often give you more valuable information than simply a list of people with a check mark if they were happy or unhappy with the procedure. The devil is in the details and the details are in the individual comments. 

Jim

I have the grasp on FLA successes and failures because I am interested. They are here. Just need time to go through the postings. Hank

The other thing is that whether someone is happy (or unhappy) with this procedure or that is so subjective. One person may be happy with certain symptomatic relief while another might be unhappy with the same results. So again, always useful to go back to the source posts.

Take for example, someone who has had say GL. The patient ticks off "very happy" because no more urgency, hesitation and night time bathroom trips. But the patient had retro, which to him was not a deal breaker. But to many of us it might be and we would not get that info from simply a "happy" or "not happy" response. Peer and group pressure can also temper responses as some may be reluctant to criticize a doctor they think tried their best but failed. So again, a careful read of the posts is always the best.

And this btw is one of the drawbacks of medical studies. Very few are privy or have access to the original data. And in fact, one recent report stated that when study conclusions were reviewed by going back to the original data, the outcomes/conclusions were often different. 

Jim

Well Hank, you're a better man than me.   I get emails whenever there's a posting and open the forum for topics I'm interested in, like FLA.  But its way beyond my 75 year old brain to keep track of whether I already read about this persons sucess/failure, how long its been since the procedure, what size was his prostate, what symptoms he had, what meds he is on, was on, etc etc.

The only way I can do that, and I did this before my PAE, is to go back several years, read every post, and manually make a chart following each persons comments.

As has been mentioned I only get info on the posts that were made, not the people who don't like to post, not the people who were happy and stopped following the forum, etc

And as JimJames pointed out I had no info on anything that wasn't in the post but might be useful info for me to make a decision like if the post says they are 'happy' what does that mean exactly.

This is an internet forum, we shouldn't have to process raw data (individual posts).  

 

I completely agree.  As long as we are dealing with raw data, that is posts that are made sporadically, have no consistency of format or definitions, it's hard to come to benificial conclusions.

What I would like to see (but am rapidly getting tired of discussing) is that we take a baby step ahead, structure the questions, broaden the population included in the survey, zero in on what info is useful, define terms like 'happy'.

Jim you in particular always try to understand the specifics of a posters situation, everything from prostate size to test results. 

We wont reach perfection but we might learn something.

jjj: The only way I can do that, and I did this before my PAE, is to go back several years, read every post, and manually make a chart following each persons comments.

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That's how I do it when I'm interested in a topic. Time worth spent. We can't expect this forum to be too many things. The biggest improvement IMO would be an expanded patient profile section that people could fill out before asking questions or posting experiences. That way, you could tell at a glance what the context of the post is. Until then, you just have to ask a lot of questions and/or back read.

Jim

jjj: Jim you in particular always try to understand the specifics of a posters situation, everything from prostate size to test results. 

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I touched upon this in my last post. That's the only way to put things in a meaningful context. Just because so and so had great results with a certain procedure doesn't mean someone else will. Hard enough to predict results even if we know all the variables, but foolish to predict if we don't even ask.

Jim

Satisfied or not? I was happy with all of my 2004 GL PVP procedure apart from not getting the teenage flow I had expected.  However that was because it was a bladder neck sparing procedure that did not cause RE.

When I had the Thulium/Holmium procedure in 2013 after my prostate regrew the flow was not any better and I had RE (Tamsulosin had already started that)  Neither are really a problem particularly RE at my advanced years.

In 2004 two friends had PVP at different hospitals and each was very satisfied. One had RE but not the other. One needed a second PVP before me and the other is having tests after diminished flow passing a blood clot after all those years.

"The only way I can do that, and I did this before my PAE, is to go back several years, read every post, and manually make a chart following each persons comments."

jjjj, I did exactly what you did, except for FLA. So you are the better man, for thinking about it first. 😁 Hank

Good morning Jim and all the men on this forum.  Most day's when I'm not doing anything I re-read some of the post and I think this one is true to form.  Are you happy or not.  I sent a e-mail to a doctor in the UK which it took me 4 email to get him but he never answered my question.  I just wanted a yes or a no answer.  I asked him if the GL procedure can be done only on one side and can they leave the ejaculatory duct alone.  This is for a man that does not want to have retro.  Well out of the jest of it I got was a man should not be worried about ejaculating but his quality of life at a older age.  Now I know that the main goal on any procedure is to pee better but why should we have to give up anything for that.  He sent me a link to read that him and his partners put out.  I did read it a few times and it does make some cents but he never answered my question.  What I got out of it is that you need a good surgeon to do anything.  He does talk about the Urolift that there is no cutting just clips the prostate open and it save everything.  No side effects. He also told me what was the difference between retro ejaculation and antegrade ejaculation.  I'm sorry but I have know what each one was before.  One go in and one comes out.  Then he talk about Ejaculatory Preserving Green Light surgery.  He suggests that the ejaculatory duct angulation and duct obstruction are critical factors in maintaining ejaculation after surgery.  By preserving the verumontanum and surrounding tissue even men in retention of urine may have excellent functional outcome while preserving antegrade ejaculation.  He also said the same can be done in a Turp surgery also.  But the main thing it said MAY preserve your ejaculation.  They said that they have had good results and only 10% ended up with retro.  To me I think 10% is still to high and I would not take that chance.  I think a lot of doctor and trying to better there procedures but I do feel that in the back of there minds they really don't care if we keep our ejaculation or not.  There main goal is for us to pee better and nothing else matters.  He also went on about all the meds that cause retro and we have to deal with that.  but I think any man that has a procedure is trying to stop taking pills all together.  As you know I was in the hospital and they gave me Flomax for 10 days.  I hated it.  It took 2 weeks but it is finely out of my system and I'm back to normal thank god.  Well that is all I have to say.  We are all different and we all deal with different things.  When you pick a procedure you have to think for yourself.  Will I be happy or not.  Also remember doctors can suggest a procedure.  They will say it may help you but they don't know if it will until it's done but that will be to late.  Once they take anything out they can't put it back. Research is the key.  Have a good sunday all.  Ken