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.

 

[James]

Thank you for sharing your expereince. I think the more we can learn form people's expereinces with this (positive and negative) the better for all.

I hope you find some improvement soon.

[Arnon Krongrad, MD]

Chris,

Thank you for being candid. I am sorry to hear of your ongoing pain and wonder what might be done to alleviate it. With your indulgence, I'd be interested to know the following:

1) What did your pathology find?

2) How old are you?

3) When did you first have prostatitis? What caused it? Which treatments had you had?

4) Have you ever had any sexually transmitted infections? Gonorrhea? Chlamydia? Other?

5) How is your overall health? Do you have any other illnesses?

6) What is your social situation? Occupation? Hobbies? Social structure, e.g. married?

[imnotcrazy]

im so sorry to read this chris. my heart is breaking reading your story. i remember well the pain down the legs . just terrible!! i too had a wire left in me by a doctor in chicago after my micro denervation surgey. i kept calling and telling him something was in me. and they told me to see a shrink and haung up on me!!! the crazy part is that they told me to see a shrink and im a therapist myself . i told them its not in my head its south of that!! and another thing . i was hurting so bad one day. i heated up a knife and cut into the scar and there was a wire left in me i pulled out!! pretty long one at that . now its ok. and that wasnt a pretty site that day. i had blood all over the bathroom. but it healed up. this is why i asked the questions im asking . we need to know how each person is doing. i had spoke to a man yesterday that has been suffering for 18 yrs he has had 6 injections so far and is 90% and somedays he is 100% better . we all need to know how each other is doing . good or bad . no man should live the way we have.
GOD BLESS YOU! YOUR IN MY PRAYERS!!!!

[Arnon Krongrad, MD]

As Nik so beautifully explained in this discussion, data censoring, in his case due to drop-out, is one of many factors biasing and potentially invalidating our ability to to assess any proposed therapeutic benefit of any treatment.

What does Chris' story represent? A 1:5 risk of failure? A 1:500 risk of failure? His story raises a question but it permits us no answer.

Notice, for example, that support groups and online forums tend to attract the dissatisfied. As such, these data collection points bias any observation to having us believe a treatment is less effective than it is. Does anybody really believe that if I had not asked him David Radford would have produced a video discussing his normal life? No. The satisfied go back to their lives and rarely busy themselves with the disease they no longer have. The only way to minimize this kind and other forms of bias is to use appropriate scientific method.

Single stories and poor methodology do not yield knowledge, even as they can yield bias. You, as a community, should insist on trials getting done and publicly presented.

[Chris]

Dr Kongrad,

I'll answer your questions in the numerical order you asked them.

1) My prostate showed features of benign nodular hyperplasia with mild and focal chronic prostatitis. A minute focus of invasive acinar adenocarcinoma was present in the left apex measuring 3 x 3 mm. This focus extended up to 1mm from the apical resection margin. The tumour replaced <1% of the entire prostate. The cancer scored 3+ 3 on the Gleeson Scale.

2) I'm 55.

3) As stated in my initial post, I've had the disease for more than 20 years. I don't know what caused it: probably a sexually transmitted disease, but I'm not certain. I've had various treatments from doctors all over the world--from the UK, to China, the Philippines, the US, and back to the UK. Treatments included years of antibiotic treatment, massage therapy combined with antibiotics, and finally, intra-prostatic injections from doctors in the US and China. All treatments failed.

3) Yes.

4) My overall health--considering what I have been through--is holding up. I caught Hepatitis C when receiving intra-prostatic injections from a doctor in China, when reports started to filter through that this doctor was helping/curing a lot of western patients whose urologists had given up on them. The reports were false..

5) My social situation is fine. I'm a published author. I don't smoke or drink. I eat well. I'm highly inteligent, articulate, and believe it or not, I have an interest in medical diseases. I'm not married but have a long-term girlfriend.

Now can I ask you a question, Dr Kongrad? Have you had any of your patients wake up in the recovery room after an LRP in excruciating pain? Because I did.

When I say pain, please remember that I've had chronic and relentless pain between my legs for more than 20 years. But this post-operative pain I experienced was something else. It was off the Richter Scale. In my Patient Records, which I finally extracted from the hospital after issuing legal threats, the nurse in the recovery room states that I was, "screaming and shouting", and in an "emotionally distressed state." She also noted, that the skin on my left hand had "turned pink", and my "buttocks were clenched."

Extra doses of morphine were needed to put me back to sleep.

[Arnon Krongrad, MD]

Yes. One of my patients woke up with pain and in distress at a level not seen in either other prostatitis patients or prostate cancer patients who had had LRP. This patient had been on narcotics for 25 years and had been on large doses in the months before surgery. Functionally, he was a drug addict, although not in the classic street sense of the word. His pain represented withdrawal and it responded as predicted to more narcotics.

Have you ever had conjunctivitis? Arthritis? Bone pain? Have any of your sexual partners ever had those?

[Chris]

I caught conjunctivitus more than 30 years ago while on a working holiday in Greece. I had to return to the UK, where I was given eye drops and my left eye was covered with a patch. After a few days the condition cleared.

I've had lower back pain for years, which I'm sure you already know is closely linked to chronic prostatiitis.

As for your other two questions.....no, and I don't know.

[Chris]

Dr Kongrad,

For your consideration:

When you tell imnotcrazy, "that support groups and online forums tend to attract the dissatisfied"---you conveniently forget that up to today, all the stories on this forum were success stories. So the assertion you make is false.

Please also remember that I've been a member of this forum since it's inception. I am not some crank who goes around posting spurious stories on internet forums. What happened to me happened; and I'm still living with the consequences.

[imnotcrazy]

you are so right chris . i have been here from the begining as well. like all of us men we just want the pain to stop. lets be FRANK here . when your in pain . your ass is on fire. and your pissing flames. you dont give a crap about science and some collected data. you want to find men that are pain free and how they got cured . period !!!!!
GOD BLESS US ALL!

[Chris]

Hi imnotcrazy, we haven't spoken for a long while. It's good to hear from you again.

I'm so pleased that the intra-prostatic injections worked for you, and you are still feeling relief from symptoms. I don't know whether you are aware, but I also flew out to see Dr Bahn in Ventura, but unfortunately his injections didn't work for me..

Such is life.

[imnotcrazy]

im sorry to hear that . i have been doing great . havent been on the boards much. so i figured i would ask how guys have been doing after the surgery. your in my prayers chris your a good guy i hope you are pain free soon.

[Arnon Krongrad, MD]

The concept of tendency is that it allows for lack of uniformity. In other words, this forum’s characteristics in no way denote that others are the same. So the relative concentration of happy stories here in no way means that one is likely to find the same elsewhere. This forum may be the exception, perhaps in more ways than one.

Perhaps the only reason that this forum has happy stories is that I have specifically asked my patients to share their views here (my action has biased this forum in a positive light relative to what surely would have been). This is because my patients represent one of very few, if any, organized and accessible collections of prostatitis patients who have had surgery and it seemed to all of us that others should hear from them and have a chance to ask questions. Until we find a few forums in which the participants are mostly rid of their illness and are satisfied, it seems the assertion – online forums tent to attract men whose need for relief is not satisfied – is plausible.

To illustrate the variations of patient behavior: A while back I got hold of the cancer registry records of the county in which I live. Upon survey, we discovered that 2% of prostate cancer patients attended support group meetings. In other words, the support groups are a tiny fringe minority. Attending those meetings, one found a collection of men whose medical needs most clearly not been satisfied. Such is almost surely true for prostatitis and online forums.

Let’s not personalize generic insights. Or delegitimize in any way a man whose need for relief has yet to be satisfied. The fact remains that the need of many men to be rid of prostatitis has not been satisfied; that is the basis for the public health problem. The dissatisfied and unsatisfied are the reason we labor to find better ways.

We seem to be conflating personal need with the rational mechanisms by which actual knowlege -- versus hints, clues, and teases -- will come. Sure, a man in pain is searching for knowledge. But no matter the desperation, anecdotes are not knowledge. There is simply no way around this. Yes, in the absence of scientific data the only thing left is the anecdote and the hope. But as we’ve seen in this thread and others, men who have followed anecdote and had treatments that seemed promising, e.g. injections, have not always found solutions. They did not know that they would get better and, as evidenced, they did not get better.

We owe ourselves and our children the gift of science.