hello , how is everyone that has had the surgery doing????

[imnotcrazy]

its been a while since i have been on here. my life is pretty much back to normal .THANK GOD!

but i would like to hear from the guys who have had the surgery and give us some updates.

i dont see anything current or detailed . thank you.

i pray for us all every day!     GOD BLESS!!

[Arnon Krongrad, MD]

Yes, but the question is the proper use of collected information. Remember that power does not negate bias: If stories are inherently invalid or misleading then collecting more of them will not eliminate their invalidity or how they mislead. Anecdotes collected retrospectively do not have the scientific structure that a prospective, systematic trial has to inform us.

Use the stories to raise questions to ask your doctor. Don't use them to answer scientific questions.

[imnotcrazy]

sure i understand, but i would still like to hear all good and bad. again if you have this . you will understand where im coming from. all information is needed . i did alot of research before i had my injections by dr. bahn and spoke to many men .most have been helped and a only a few it did not . so it gives you a personal understanding of the suffering men before during and after.
im not asking scientific questions at all . just questions a guy would ask who has been living in this hell. we are not scientist we are men that has been from doctor to doctor. and from one scam to another scam. i know more about this condition that most of the urologists i have been too. sad but true...
again thank you.

[Arnon Krongrad, MD]

The desire for knowledge is obvious. The question is how to get it, amidst all the noise and distraction.

The essential point we've defined is: Knowledge comes only with specific methods. There is absolutely NO substitute for properly designed clinical trials as one step to knowledge. And there is no substitute for seeing that a scientific observation is reproducible as the ultimate step to universal truth. With prostatitis, we are far from knowledge and universal truth.

To this point ...

You did a lot of research before having injections. Implicit is that this research consisted in talking after-the-fact with other men. The finding was that "most have been helped." Men call me routinely from the US and abroad who report severe decline in function after injections. None has produced and I have not found a prospective study of the association of injection with symptom relief. So we have contradictory observations, perhaps partly explained by selection bias. The only remedy, the only way to a valid clarification, is a clinical trial.

Relating to your findings: What proportion of the total treated, i.e. the denominator, do the "helped" represent? How many of the treated were lost to followup and were they accounted for in the summation of the total treated? How much were the men who were helped helped? Was a standard index, such as the CPSI, used to measure their symptomatic improvement: Are we comparing apples to apples? How did those who were not helped fare? Were they worse? If worse, how much worse? Are there any published data on the magnitude, speed, and durability of symptom change after injections? If so, can somebody please post it? As a patient considering injections and wanting knowlege, these are questions I'd want answered.

There are in fact prospective studies of specific treatments for prostatitis. A few are posted on the home page (see left column). These studies illustrate scientifically and convincingly that specific treatments, including antibiotics and alpha-blockers, do not work for prostatitis. One might say we have knowledge about these specific treatments. Is there such knowledge about other specific treatments: Massage, injections, herbs?

You are asking all the questions any man would ask. Understood. The answers you are getting -- "John Doe" got better -- are inadequate. They are perhaps all one has in the absence of knowledge, but one should not confuse them for knowledge. Happily, all my patients seem to understand this point and are thoughtful. All are agreeing to enrolling in the clinical trial, so that today's data can inform tomorrow's decisions.

One reason there is such poor knowledge about prostatitis: The affected community is disorganized and inactive. Compare to breast cancer and HIV activism and you see the point instantly. Enlightened activism would help.

We must raise the level of knowlege about prostatitis treatments. The only road to this knowledge is science.

[Rich Ellenberger]

Hello,

It's been since December 28, 2008 since I had the surgery. Not a day goes by when I thank God I had the courage to take the risk, and thankful that Dr. Krongrad was willing to do the surgery. In terms of how it changed my life, what I wrote in my story/profile is still accurate. I can urinate at a urinal next to someone with no problem, and I'm very fast. I don't have to lock myself in a stall and wait forever to relax The prostate tissue being very "tough" was likely the reason I could hardly relax it. Even Dr. Krograd said my prostate was "sticky", meaning it was tough to remove. The urinary sysmptom relief alone was worth the surgery, when you think of the lifetime benefit. Very rarely if I sneeze hard, or assume an unusual position a drop of urine may leak, but it's very minor. Caffeine still irritates my urethra, so there's a urinary/bladder component to food sensitivities irrespective of the prostate - but with the prostate it was worse. There's also the benefit of almost no perineal pain, or sitting pain. That by itself is also worth the surgery. Then there's the benefit of not having to be on antibiotics anymore, which is good for my intestines. I haven't seen a urologist since the surgery. I claim I'm 80% better, and on a good day, 90% better in terms of prostatitis/testicular/chronic pelvic pain overall symptoms. What remains is occasional right testicular sensitivity and pain, which may be scar tissue from a 2000 bi-lateral epididymectomy. I control that by not being too rough on it during sex. I still have occasional vague pelvic pain, but this is minor compared to before. I don't pay for 3 days after sex with pain, maybe just half a day of vague/minor pain. The resolution of my pain symptoms after surgery was gradual - over a period of 3 months, except there was an almost immediate reduction in sitting pain. Oh, and not to mention the benefit of having no prostate cancer...even if it was very early stage, it's nice to know I'll never have prostate cancer later in life.

In terms of erections, they're pretty good without medication (Viagra, Cialis, etc.). About 70% normal stength. With medication it's pretty normal. I'm hoping for them to get back to normal without meds - but even if they don't, I'm happy with where I am at. I'm happy that I have good orgasms still. The stonger the erection, the better the orgasm. That's about it I think in terms of follow up.

Anyhow, I'm very happy with the long term results. The benefits far outweighed the risks for me.

[imnotcrazy]

glad to hear it... i hope you get even better in the future.

[imnotcrazy]

also there is more profit in breast cancer and HIV than prostatitis .lets not be foolish and think that its not. science does get blurred by profit, thats the way this world is in these times. $$$ has blurred this worlds vision .
you make some good points . as well as i do. lets just hope we get good outcomes so us men dont have to live like this.
GOD BLESS US ALL!!

Arnon Krongrad, MD said:

The desire for knowledge is obvious. The question is how to get it, amidst all the noise and distraction.

The essential point we've defined is: Knowledge comes only with specific methods. There is absolutely NO substitute for properly designed clinical trials as one step to knowledge. And there is no substitute for seeing that a scientific observation is reproducible as the ultimate step to universal truth. With prostatitis, we are far from knowledge and universal truth.

To this point ...

You did a lot of research before having injections. Implicit is that this research consisted in talking after-the-fact with other men. The finding was that "most have been helped." Men call me routinely from the US and abroad who report severe decline in function after injections. None has produced and I have not found a prospective study of the association of injection with symptom relief. So we have contradictory observations, perhaps partly explained by selection bias. The only remedy, the only way to a valid clarification, is a clinical trial.

Relating to your findings: What proportion of the total treated, i.e. the denominator, do the "helped" represent? How many of the treated were lost to followup and were they accounted for in the summation of the total treated? How much were the men who were helped helped? Was a standard index, such as the CPSI, used to measure their symptomatic improvement: Are we comparing apples to apples? How did those who were not helped fare? Were they worse? If worse, how much worse? Are there any published data on the magnitude, speed, and durability of symptom change after injections? If so, can somebody please post it? As a patient considering injections and wanting knowlege, these are questions I'd want answered.

There are in fact prospective studies of specific treatments for prostatitis. A few are posted on the home page (see left column). These studies illustrate scientifically and convincingly that specific treatments, including antibiotics and alpha-blockers, do not work for prostatitis. One might say we have knowledge about these specific treatments. Is there such knowledge about other specific treatments: Massage, injections, herbs?

You are asking all the questions any man would ask. Understood. The answers you are getting -- "John Doe" got better -- are inadequate. They are perhaps all one has in the absence of knowledge, but one should not confuse them for knowledge. Happily, all my patients seem to understand this point and are thoughtful. All are agreeing to enrolling in the clinical trial, so that today's data can inform tomorrow's decisions.

One reason there is such poor knowledge about prostatitis: The affected community is disorganized and inactive. Compare to breast cancer and HIV activism and you see the point instantly. Enlightened activism would help.

We must raise the level of knowlege about prostatitis treatments. The only road to this knowledge is science.

[Nik]

Dr K, you are totally correct when you say "how many are lost to follow up?"

I was told verbally before receiving injections that 75% of men have 75% relief. I was also told that this treatment had never made anybody worse (Was I the first-I doubt it???). That along with some other patient testimonials was enough to get me on an 11 hour flight (a brave thing to do considering my sitting pain) to California from the UK to do the injections. I was only able to do 1 of a course of 3 injections before the pain was too severe to continue. I filled out the pain score questionnaire before the first injection but was not able to return to fill out the post treatment questionnaire. I am one of the guys who was made worse that went unrecorded. If all guys like me had filled out the questionnaire afterwards, I wonder what that 75% would become, 50,40,30%-we will never know. It definitely has really helped some guys no doubt, but I think that 75% is highly skewed and inaccurate.
Perhaps it should be changed to "75% of guys who manage to COMPLETE the treatment" are made 75% better.

That said, the scan I had was excellent and showed a large calcification/stone in the neck of my left seminal vesicle (the largest the Dr had ever seen in that position) where it joined the prostate. I am guessing this is why I am in agony for 2 hours after emptying my bowels every morning and need 2 Tramadols to get under control again.

Of course the LRP would remove that horrible stone.......!!!!!!

Rich, great story and you fill me with hope, for when my time comes.

[Arnon Krongrad, MD]

Have you seen any actual scientific publications looking at symptomatic relief after injections?

[Nik]

The only one I can find is this one attached, by the Dr in Rome.

[Mark]

Hi Nik,

You make me think twice about getting those injections. It seemed like the only treatment that made any sense to me. I was planning on going this July but I certainly don't want my condition to worsen.

Did the pain go away for even a few hours?

[Nik]

Hi Mark

Yes the pain did go away for about 2 hours (No symptoms at all) the morning after the injection. I really thought I was in with a chance. Unfortunately after my first bowel movement the pain was back with a vengeance. It was a frightening experience being in that much pain (lying on floor crying-and I have a high pain tolerance) in a country where healthcare is expensive for the uninsured (No travel insurance covers experimental treatments AFAIK). Thankfully, the Dr prescribed me some powerful painkillers which kept things bearable till I got home.
I do not regret the experience (I knew it was risky), because it did prove the pain was coming from the prostate/SV area, even though relief was short lived. I believe the steroids/pain control had worked temporarily overnight.
Mark, it MIGHT work for you and buy you some time, but its important you weigh up the risks and think carefully about it before going. No matter what you are told about the treatment never making anyone worse-I can assure you that is not true. No doubt this is why the last line on the Dr's web site states "You should not pursue this method of treatment unless all of your other options are exhausted and your situation becomes desperate."....!!!!

[Arnon Krongrad, MD]

I finally got the chance to read the paper linked above. Reflections:

1) The study uses the NIH-CPSI as one of its principal symptom measures. On page 4 it cites the NIH-CPSI in the text and refers to the specifics in Table 4. But no table, including Table 4, provides NIH-CPSI scores.

2) By inference, one might conclude that in Table 4 "NIH-PSS" is the NIH-CPSI. Why must the reader assume anything at all about a measure that is so central to the story?

3) One notes that in Table 4 the 12-month scores are not provided. Why not? Is the table mis-labeled? After all, the methods section provides that the followups were at 6 and 12 months, but Table 4 references 3, 6, and 12 months, where the 12-month column has no results, only statistical analysis output.

This sort of sloppiness erodes somewhat the confidence in the investigators' bookkeeping. If they cannot provide the most rudimentary parameters in an organized fashion, then how cleanly did they organize the far more complicated patient data? It's a question that nags, as do questions on drop-out rates, which are not provided.

Be that as it may, we see an average pre-treatment NIH-CPSI of 25. At 6 months (or is it really 12 months?), the average NIH-CPSI is 17. Better than what is seen in the oral antibiotic and alpha-blocker trials posted on the home page.

The drop from average 25 to average 17 is statistically significant. Statistical significance denotes merely that an observation is not due to chance alone. It tells us nothing about its clinical meaning.

Is a drop from 25 to 17 clinically meaningful? This is subjective and to be defined by the patient individually. A patient with a score of 17 is symptomatic. Is he satisfied? Is this enough? Here everyone can have an opinion.

And what about all the symptoms that many patients report but that the NIH-CPSI does not capture: Fatigue, chills, malaise, back pain?

The average score of 25 has a reported standard deviation of 5. So some patients entered the study with scores of 20 or lower. And the 12-month (or is it 6-month?) average score of 17 has a standard deviation of 3. So some patients left the study with scores of 20 or higher. Did all patients lower their scores? Or was there cross-over such that some individual patients came in with scores of 19 and leave with scores of 21? Without a scatter-plot or other detailing, we don't know. We are left with the averages, not the individual stories. We cannot see patterns of individual response with group average.

Finally, there is no mention of symptomatic worsening in this study. Yet we know from you, Nik, and others that prostatic injection has in some cases been associated with dramatic worsening of symptoms. Why was there no mention of worsening? Did it not occur? Were the investigators blinded to it by data censoring due to drop-out, which is not mentioned? Or did they simply forget to report cases in which patients worsened? One is left to wonder.

The study shows that with prostatic injections there is on average mild and incomplete improvement of some of the symptoms of chronic prostatitis. Future periods may answer some of the questions this report raises.