My Failed LRP

[Chris]

 

 On January 2009, I underwent LRP surgery for chronic and intractable prostate pain. Like most long-term sufferers, I can’t remember the exact number of years the pain had lived inside me. But if somebody put a gun to my head, I would say at least 20 years.

Making the decision to have my prostate removed wasn’t easy. I thought long and hard. If I could pinpoint the one deciding factor in the decision-making process, it was this, “If the LRP leaves me impotent, at least I won’t be in any pain. Or if the LRP leaves me in some way incontinent, at least I won’t be in any pain.”

So I made a deal with myself: I’ll get rid of the prostate, in exchange for a pain free life.

Wrong. Sixteen months on, I still suffer chronic pain between my legs. What’s striking is the pain seems to originate from the site of the prostate, before radiating down each leg—sometimes as far as the knee. Also, I have been experiencing intermittent blood loss from the end of my penis, as well as poor urine flow.

Last month, my urologist—who strongly advised against prostate removal—ordered a cystoscopy. A metal clip was found lying inside my bladder, close to the urethral join. My urologist also observed that the urethral join was “too tight”. I have since undergone corrective surgery, to remove the metal clip—a leftover from the original LRP. At the same time, the urologist dilated my urethra, which has improved urine flow markedly 

Unfortunately, the pain continues unabated. I now take more pain-killers than pre-surgery.

So for the men out there considering LRP, think very carefully before deciding on surgery.

I should add, that Dr Kongrad didn’t carry out my LRP. It was done in the UK.

 

[imnotcrazy]

i think it does fit into the bad doctor.. again dr. k you have not traveled the road us men have.
from one so called specialist to the next . that have great website . that dont even know the information on their own site. i could write a book on bad doctors ! im sure others could as well. i had a wire left in me that i had to remove myself . pathetic!
your trying to polish a turd here. the surgery didnt work for chris and the doctor screwed up .
you can polish a turd all day long.. at the end of the day its still a turd.

[Arnon Krongrad, MD]

The generic fact

Sure, you have traveled a lengthy road as have most of the men on this forum. Of course you have brushed up against varying qualities of doctors. However, it is a disservice to everyone involved to conflate "bad illness," "bad outcomes," and "bad doctors." They are separable concepts. Surely one can have terrible illness with terrible outcomes under the care of wonderful doctors.

The individual case

In a setting such as this, in which none of us has examined a specific member or reviewed his medical records or discussed his case with his doctors, it is reckless to reach any kind of judgment based solely on the input of a single member. Moreover, it is not our purpose here to judge anybody: Not doctors and not patients. Rather, our purpose would seem to be to broadly explore ideas and bring as much scientific input as possible into the equation. Our members benefit from this. As importantly, so do our silent readers.

[imnotcrazy]

well after reading that. this reader is gonna start taking prozac. i will start with 20mgs a day.

[Chris]

Arnon, were you Bill Clinton's spin doctor in another life? You seem determined to lessen the impact of anything negative concerning LRP surgery, or regarding your medical colleagues for that matter.

Here's an example (I don't have the time to list them all). You write, "Of course, you have brushed up againt varying qualities of doctors."

Brushed up? That means a "momentary incident". A "passing glance", " a graze" or "something that doesn't last."

None of these phrases are correct in the context imnotcrazy and myself are talking--and thousands of other prostatitis sufferers for that matter. Many of these men with c.p. have been literally tortured in their endless quest to find some relief from their symptoms. Others have been abused on a lesser scale, by careless and incorrect treatment methods put in place by incompetent and uncaring urologists. These have lasting effects on the patient, both physically and pyschologically. They are not passing glances.

I know a patient who has recently returned from the US, whose condition has been made significantly worse after treatment. I know another patient who had an LRP 15 months ago, and is now suffering significant pain--this is after being pain-free for 12 months post LRP. He may need to have a second operation, like I did.

So there is no need to dress every case up with a pink ribbon. If mistakes are made, surgeons should have the courage to admit their mistakes, so the next generation can benefit. The problem is doctors and surgeons have egos--some as big as the Grand Canyon, and they are unwilling to admit their mistakes. This is something I myself have found out.

It's bad for business.

[Arnon Krongrad, MD]

We agree. Some patients get care from inferior practitioners.but a bad disease and/or bad outcome do not in themselves mean a bad practitioner.

Moreover, there is a limitation on what an online forum can do. First of all, this particular forum is not aimed at judging individual doctors or individual patients. Secondly, given than nobody here actually examines the patients or hears from others involved in their case, we simply do not have the tools we would need to properly interpret their reports. This requires a discussion that is to a great extent generic, and not specific.

We are trying to help by sharing our insights.Suggesting a rheumatological basis for symptoms is not a personal recrimination. Varying points of view are not personal attacks.Interpreting that blood in the urethra or urine has many explanations is not an effort to delegitimize.

There is no cause to take things personally or to make personal attacks.

[Chris]

Wouldn't you take it personally? If you had opted on radical surgery to remove a critical organ inside your body--a final and life-changing surgery designed to end all pain coming from that organ, only to find yourself in worse pain than pre-surgery? I thnk you would take it very personally. I doubt you'd be sending your surgeon any Christmas cards.

I have not made any personal attacks against you, as you suggest. Why would I? I have made some astute observations on your clever use of language. These are not personal attacks. They are observations. It's not your fault I find myself in the difficult position I am in--although I must admit that reading David Radford's story had some small effect on me, and the four "success stories" from my own surgeon. Interestingly, he said I couldn't speak to any of his patients personally. Hmmm...

But these stories were not the deciding factor in my decision-making.

So let's try and keep the dialogue on this thread crisp and to the point. I derive no pleasure from this thread. I would have been overjoyed to have been another LRP "success story", and living a pain-free life. Unfortunately, I now find myself with another set of problems--both medical and legal.

The deciding factor in putting this thread up was to warn other frightened and vulnerable men considering LRP surgery, that not all patients having surgery end up walking into the sunset, holding their girlfriend's hand. It was to warn them that not all surgeons have the same degree of skill. Not all surgeries are successful. Some are botched. Some patients are made worse. Some are made better.

As a thinking, sentient human being, I would hope a thread like this, warning your fellow man of what might happen post-surgery, is something you would applaud.

[Arnon Krongrad, MD]

Absolutely right. And your candor is exceptionally useful as a basis on which to lay out the conceptual issues confronting any other man who reads it.

This thread, weaving around a clinical case, beautifully illustrates that not all treatments end in the desired result, that there is risk in seeking treatment, including surgical treatment. Among the risks is the risk of therapeutic failure. The risk of therapeutic failure is inherent in virtually all medical treatments: Antibiotics, radiation, chemotherapy, and on and on.

This thread helps to lay out the distinctions among illness, outcomes, and quality of care: These are not one and the same. Likewise, it lays out the limitations of a one-source report and an online discussion forum. Nobody on this kind of thread is sufficiently close to a situation being reported to reach any kind of valid judgments or to give actual medical recommendations. Certainly this kind of thread is inadequate to reach judgments about individual doctors, individual patients, or instances of treatment.

This thread yet again fortifies an essential argument, which you have now forcefully and correctly reinforced: Anecdotes have limited value. Any other individuals success or failure is inadequate to permit one to know what will be with him.

All of which fortifies the essential other observation: To move beyond the hypotheses suggested by anecdotal observation to actual, operationally useful knowledge requires clinical trials. Only with trials can we hope to know the answer to even the most simple and fundamental of questions: What is the likelihood that I will achieve my desired result with the proposed treatment?

[James]

Wow - this thread has some significant implications. I guess all along my assumptions are some things work for some people - some things don't.. We should try all conservtive measures first - then if we choose to try riskier ideas we do it with our eyes open to the risks.

I truely sympathize with Chris' condition and hope him an improved state soon. I do think hearing "failed" stories to counter "success" stories provides a needed balance - but I hate to think of the suffering of the individual.

I - for example - would try anything to get better - but am now more aware of possible poor outcomes - so that I will be that more of an educated patient if I choose a serious treatment option.

[Arnon Krongrad, MD]

If this thread has caused even one person to ask questions before choosing a treatment, then it has been worth the effort.

Let's expand further...

All treatment options are serious, including conservative ones. Consider some of the other stories told on this thread and others. Many of these patients had "conservative" treatments that were not only inconvenient, costly, and not therapeutic, but also that carried substantial side effects. One, for example, spent his days working under the influence of narcotics. Another had all kinds of bowel dysfunction from chronic antibiotics. Another had terrible pain after having antibiotics and steroids injected directly into his prostate. Most have suffered months and years of diminished quality of life and aborted social interactions because of unrealistic expectations placed in conversative measures. There is simply no road free of risk, including the road of doing nothing at all.

One question is how to reduce risk, especially with a mechanical art such as surgery. In my opinion, one very important element in surgical risk reduction is the surgeon -- his experience, focus, and commitment. While it may be obvious when so stated, many patients forget to actively think about it when they are researching. I see that on a daily basis. So the risk with surgeon A may be quite different from the risk with surgeon B. Any patient trying to assess his risks has to look beyond the treatment type and also must look at the practitioner providing it. Kind of like looking beyond the golf club to ask if it is one's little sister or Tiger Woods wielding it.

Biology, illness, and life itself is a complicated beast. No two people are alike. So one cannot reasonably expect all to react identically to the same treatment, even if surgery and performed by the very same surgeon on the very same day. Therapies vary, doctors vary, and illness and patients vary. There is risk and reward inherent in any proposed therapeutic effort. But how much?

You talk of a critical issue: Balance, by which one might infer that you mean the setting of informed and realistic expectation. In this circumstance, we are deeply lacking in our ability to strike a rational balance between success and failure stories. Why? Because we don't have in hand the trials that would permit this. What does a man's report of success or failure due to our effort to strike a balance? We do not know. We do not know if it represents a 25 percent or 75 percent scenario. When trials are done and then reproduced in various centers we come closer to a balance that is rationally quantifiable.

[James]

Dr. -- you are exactly right at hitting my train of thought.
But then - I must admit - that I am left as "befudled" as to what to do now - as I was before finding this forum etc...

It just really hits home - that those us us needing to sove our problems now - are - to a very large degree- shooting in the dark - as the trials that you refrence (like yours) are nowhere near published.....and I am sure that others like me on this site - are in no mood or condition to wait.....hence "we pay our money and take our chances"....as the saying goes.....

not a great way to approach our medical conditions - but what else can we really do.......

[Arnon Krongrad, MD]

You correctly distinguish the needs of of an individual patient from the needs of a community of patients and science. Today's patient wants relief now and must decide if to pursue it with incomplete knowledge or to wait for science to provide better knowledge. He may be limited to anecdotes, as is the case here, and has to navigate their limitations, not knowing what those limitations might be. This is where a thoughtful doctor can be immensely helpful. It will also be helpful to always remember that anecdotes are hard to relate directly to another patient.

Incomplete clinical knowledge is hardly unique to chronic prostatitis, by the way. We want and need more scientifically validated data for so many diseases. Just think of cancer patients, for example.

Having said that, there are things a person can do to improve the chances for success, whether a treatment is associated with trial data or not. For example, surgery involves a surgeon, a factor independent of surgery per se. So in selecting surgery -- contrasted with taking a Levaquin, which is the same no matter who prescribes it -- a patient selecting surgery needs to also select a surgeon. As for selecting a surgeon, this is an art that follows certain guide lines that can help a patient improve success and minimize risk. For interest, here is a list I would use if I needed a prostate cancer operation. Click here to see it. It's not a formula and it's not a guarantee but it's food for thought. Keep in mind that it was written for cancer patients but many of the points are relevant to prostatitis patients. (Disclosure: I am Medical Director of the not-for-profit Prostate Cancer International, which runs the site on which that piece is posted).

[mauricio chenlo]

great discussion. I haven't visited the forum for a while. I've visited other forums like the CPPS related to the Anderson/Wise theories and the administrator doesn't any questioning or critical comments of this theory. I commend Dr. Krongrad for trying to balance and be as helpful as possible with his expertise. Mauricio Chenlo