UCPPS - Prostatitis, Interstitial Cystitis Forum

webslave wrote:

mikey33 wrote:Eden did not do Chris' surgery. It was a first-time surgeon. That is HUGE.

Email me as to why you think that is true.

Chris was a patient of Eden's, from what I have read.

Let me see if I can find the email he sent me. The inexperienced surgeon left a clip in his bladder causing bloody urine, and severe pain, for quite some time. The blood-filled urine ceased after a corrective surgery which included removing the hardware left behind.

I cannot find the email, but this is off of Dr. K's site:

At 5:18am on October 8, 2008, Chris said…

Dr Eden,

Thank you for seeing me yesterday. Just a couple of points which I would like to clarify.

1) You said yesterday that you would "oversee" my surgery. I take it from this that you will be inside the theatre, watching and directing whoever will be doing the surgery. I understand the need for training urologists in this new field of surgery, but I felt slightly uncomfortable on the train ride home yesterday. I need to be reassured that the outcome from my surgery will be exactly the same if you were the surgeon carrying it out. After all, that's the reason I travelled to Surrey in the first place, to be treated by you. Dr Krongrad tells me the skill of the surgeon is paramount in LRP procedure for a successful outcome.

2) You mentioned that you had removed the prostate from a sixth c.p. patient. You said it was too early to tell how the patient was progressing. May I ask how long ago the patient's prostate was removed? Was it days, weeks, or months?

Once again, thank you for all your kind assistance, and good luck with your marathon.

Chris

So Eden either did the surgery or was present for the surgery, in charge.

Eden did not do the surgery. I will see if I can find the email. Eden being "in charge" means squat. His hands were not controlling the equipment, and in a surgery as delicate as a prostatectomy, that is CRITICAL. I just know I would not do the surgery unless someone like Dr. Krongrad was performing it!!!

I hope I never have to find out, though. I will be starting PT this week, and will give it at least a year to work (at least somewhat.) If I do not see any results I will probably go the surgical route. I am praying that my PT finds me as a patient on Tuesday!!

I am a bit late to respond, but I stand by my earlier comments. There is no scientific evidence to support prostate removal as a cure for the typical chronic prostatitis / chronic pelvic pain syndrome patient. To the contrary, there's much evidence - anecdotal and in studies - that it does nothing at all, assuming it doesn't make you worse. A few anonymous people claiming the contrary does not make for good statistics, and it's hardly peer-reviewed data.

I would strongly encourage you to exhaust all possible, safe options before going the route of the knife. Medicine is strongly trending toward prostate pain being a symptom, rather than a cause. Just my opinion. Take it for what you will.

Jay, you make a good point. I do not want to go the surgical option unless I absolutely have to. That is why I will be giving PT a chance, for at least a year, to see improvement (along with altering my lifestyle to reduce stress.) If, in a year from now, I am in the same point I am today, I will probably risk the surgery. Then again, I have yet to have any EPS taken from my prostate. I have only had semen cultures taken which showed staph (that doesnt say anything because staph is so common in semen.) I wish I could find a urologist that would at least take a culture to rule out bacteria.....

The only other thing is that I was on Bactrim, Amoxicillin and Doxycycline, but none of those helped. Maybe it isn't bacterial.....

If you've been through three rounds of antibiotics, and urine / semen cultures have been clean, my layman's guess is that you probably don't have a bacterial infection. It really isn't that hard to detect. If it were an acute infection, that's a medical emergency, and you'd be on your way to the ER with crippling pain.

I am seriously thinking to go ahead for prostate removal, I spoked today with Dr. Krongrad and Dr. Eden too.
BTW Dr. Eden wrote me back an email

I have done just over 1, 500 laparoscopic radical prostatectomies during the past 10 years, 11 of which were for chronic pain. Nine patients are pain free and 8 were found to have incidental prostate cancer. My overall continence and potency rates at a year following surgery are 97.6% and 82.3%.

Also Mr. Krongrad was very realistic, he told me about side effects. I will think about that again. I have CP for 10 months, I am driving my taxi in horrible pain and depression, so I cannot go like this for ever, I have done allot of research my self, I know the risks but this seems to be the only way out available at the moment.

PS. Two weeks ago I've been seen in Matter Hospital Dublin by a jungest Dr. who put me on Vesitrim and Ofloxacin for 4 weeks, after I told him I was on ofloxacin for 6 weeks before with no results. He didn't even perform me an DRE, just did absolutely nothing, and scheduled me in 2 months again. That's ridiculous.

adyxon wrote:"I have done just over 1,500 laparoscopic radical prostatectomies during the past 10 years, 11 of which were for chronic pain. Nine patients are pain free and 8 were found to have incidental prostate cancer.

So he has only done 11 prostatectomies for pain, and 8 of those had cancer. Note that another study that looked at prostate biopsies of chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) patients (368 biopsies from 97 patients) found no cancer cells, and the authors commented that this was unusual:

"A final observation deserves comment. In our relatively large patient cohort we expected to find some incidental cancers of the prostate but none was noted ...".

So I put it to you that Eden's sample is highly unusual.

I am driving my taxi in horrible pain and depression, so I cannot go like this for ever, I have done allot of research my self, I know the risks but this seems to be the only way out available at the moment.

This is probably not the best way to be making the decision, but it is what it is and many have been there. There are men now just as determined to have their testicle removed, multiple prostate injections, this ectomy, that ectomy, PNE surgery, etc. And just as convinced its their only hope. At the very least it would be better to be fixated on the injections (by a qualified western dr.) if one is going to be fixated on an invasive option, as while not risk free (or seemingly that effective) it is less invasive than the route you are considering.

There are tons of women in pelvic pain with the same symptoms as the men. Urinary urgency, urinary pain, golf ball feeling in the rear (where their prostate would be if they were male) , radiating leg pain, thigh pain, adductor pain, unable to wear underwear, unable to sit, etc. The same as men. There are more women than men with pelvic pain problems, experiencing symptoms of CPPS, and they do not have prostates.

Except for hysterectomies many if not most have the same mo as many men:

1) Job sitting many hrs/week usually in IT/law/accounting etc
2) Great interest with a 1) bike 2) weights 3) running with soccer, dance, karate, swimming (kicking stuff) as a runner up
2b) possible history of back fusion - usually l5-S1

You''re much too early into this (8mo) to be considering the route you're going.

To find that many cancers (8 out of 11) in men in the late 20's to early 40's (where most chronic prostatitis / chronic pelvic pain syndrome patients are) by coincidence is pretty strange. Many uros don't even consider it that early. It is probable only a minuscule percentage of the 30-50 million men and women in the western world experiencing chronic prostatitis / chronic pelvic pain syndrome symptoms have prostate cancer.

Unusual and tiny study.

Get well
-jim

And don't trust the glowing reports Krongrad likes to feature at his site. I bet if I offered treatment that consisted of a punch in the mouth, I'd find a few people who, months later, would swear it cured them. You must rely on peer reviewed studies, and there are none for this extreme surgery.

As if to confirm what I said in my last post, Krongrad is now doing something highly unethical, namely emailing anyone who ever joined his forum with anecdotal stories about people who are supposedly cured by the surgery he performs.

Gentlemen, this is not the way medicine, or indeed science, works.

You do not start a trial (or an experiment) and before the trial is over, begin pre-empting the findings and contacting people with information cherry-picked from selected case histories in order to canvass for more business. He should first publish his results and, if the results show a high success rate, have other doctors replicate them.

The way he is doing it makes me think he knows he will either never get the results published, or never get them replicated, or the results are so poor he never intends publishing them, and maybe never did.

Here's the email:

Arnon Krongrad wrote:
Can the effect of prostatitis surgery endure?

Three years ago, we observed that a patient with 8 years of severe, treatment-resistant chronic prostatitis had immediate and complete relief of symptoms with laparoscopic prostatectomy. In more than 3 years of followup, his response has been fully durable.

Given that no two patients recover exactly the same from treatment, we initiated an IRB-approved, prospective clinical trial. Its purpose is to characterize symptomatic response to laparoscopic prostatectomy. The trial captures data in quantitative ways and is in its early stage. However, we are in association with the trial getting narrative reports from individual patients.

Here are recently submitted long-term reports that provide insight regarding the potential durability of the symptomatic relief with prostatitis surgery:

* Click here for a 2 ½-year report from the first, pre-trial patient (upper right video)
* Click here for a 2-year followup with detailed narrative and CPSI scores
* Click here for an 18-month followup from another patient

As we gain more insights, we will be pleased to share more reports and what we know.

In the meantime, you can get information on the Prostatitis Surgery site.

Hi,
I'm new in the club. I've been suffering these symptoms for 6 months. I consulted with Dr. K and he seems pretty convinced of his remedy for extreme cases of prostatitis. I'm pretty positive he is also interested in confirming his theory that CP in many cases could be cured with LRP. Not sure his main motivation is financial gains, although I wouldn't discard that from anyone living in a country in which its health system is mostly driven by profit. I've spoken with him on the phone three times and he seems to have a clear understanding of the suffering and frustration connected to this condition. I doubt someone who operated Pat Robertson and other celebrities will jeopardize his career trying to sell LRP. I should add, that the perception I get from this group is that the Standford boys are "the miracle" healers of this condition. I've done the PT, do yoga every week; hot yoga, meditation, etc. and none of that seems to work.
sincerely
mauricio chenlo

If you want to remove your prostate despite what you have learned here, go right ahead. Let us know how it went.

We have few updates from Krongrad's forum: "German", a patient who had a LRP 2 years ago for CPPS, done by Dr. Eden in UK, feels bad again after 2 years

Reply by theodor kochansky on February 8, 2011 at 6:34am wrote: I am member of a polish prostatitis forum, I had a private discussion with a member. He told me that German is not very well ( but is better than he was before). Hes symptoms came back about 60% . I sent him a new PM last night I hope will give us some details. I hope German will come back again to give us updates. I think the best way is to wait until 2015 when this study will be finished and published.

Reply by Marcin 1 day ago wrote:Unfortunately I have to confirm the information it gave about the German Theodor Kochansky. I spoke with German personally. The first year, according to him was fantastic. I spoke with him, and he told me that he started too early to enjoy life, riding a bike, practicing sports, which caused back pain. The doctors found him Myofascial pelvic pain. He told me that He still feel better than before the LRP, but the back pain does not inspire optimism. He told me also that as soon as you gather more information, share them with us on this forum.