G8 GT's Page

Mike,

Everything is going well. I have all sorts of energy. The bladder is still not 100% but continuing to improve all be it slowly. On many days I have no problem. However, if I get involved in a lot of exercise it can leak slightly. It does not slow me down at all. I was in Texas on Monday, Colorado on Tuesday, Utah-Wednesday and Memphis yesterday. I got home at 12.00 am and am up and headed to the golf course. This is not an unusual week for me and remember I am 62. I could not have made a one way trip to Texas before I had the operation.

The erectile situation is not 100% but also improving. Be careful not to compare yourself to me as I had 2 operations-Turp and Bladder Neck before I had the Krongrad surgery so my bladder etc. had been traumatized twice before I went to Florida.

Good Luck,

Bob

Hey Mike.... Well, the big problem ended up being my heart.. Strange anomaly, it took every kind of MD you can think of, and Mayo Clinic to finally figure it out. After prostatectomy, I continued to decline, eventually dropping to 112lbs and being bedridden for nearly 4 months. Heart repaired in January, and although I still have some residual heart damage, some has healed, and I am now back up to 138lbs and gaining strength. I was 152 when I got sick. Now whether or not the heart problem was related to the prostate, i.e., perfusion or lack thereof of the prostate, is something only Dr. Krongrad could probably answer. But my prostate was benign in all ways when pathology came back.. My urination problem has most definitely improved, I pee like a teenager now, and so I know that something was wrong with it, but coming up on a year and still no erections.... Not even slightly.. I really hope that that changes, as I was VERY sexually active prior to the surgery and illness... I am just now 50..
It has been a long road, many doctors thought I had mental problems, depression (duh?!), and "fibromyalgia"... Finally took the best Cardiologist Mayo had to TAKE THE TIME to figure out the problem and repair it.. Thank God for Dr. Kusumoto...
Hope all is well with you, and that you are getting everything back!

Christof

Hi Christof,

It's so nice to "see" you again. :-)

Some related points:

1) A substantial proportion of the prostates are pathologically benign. The pathology findings shed no particular light on your case.

2) This is kind of like the guy with a kidney stone who goes to the urologist and is diagnosed with prostate cancer. In this case a guy with prostatitis goes to the urologist, winds up with a workup for pheochromocytoma and is diagnosed with heart disease. Some days I just sit back and think God works in mysterious ways, using one illness to help the patient identify the second. I can't think of any reason to believe the cardiac dysfunction had anything to do with your prostate. They seem like two completely unrelated, albeit coincidental, diseases.

3) Erectile function is multifactorial. Among the variables that matter are fatigue, aerobic capacity, depression, cardiovascular illness, medications, and prostate surgery. You are describing several directly relevant variables that have been at play in your case and that are on the road to recovery. Obviously the extreme weight loss, depression, exhaustion, prostatitis, prostate surgery, heart disease, and heart surgery are extremely relevant and any one alone can cause erectile dysfunction; obviously together they are a major source of problem for the erections. Nobody would be "Casanova" after going through what you went through. Still, given your good sexual activity before illness, your motivation, the reduction in pelvic pains, the recovery from both surgeries, the gradual weight gain, the increased strength, and corrected heart function, there is solid reason for optimism.

Welcome back.

4) A colleague once remarked that every time he says he's seen it all, the next patient walks through the door to prove him wrong. I have never seen a case like Christof's. The implication is that as interesting as it may be to other patients, its implications for any other specific individual are even more limited than usual. This is important for other patients to understand.

5) Having said that there is no apparent basis for suggesting that the heart disease could have caused prostatitis, is the opposite possible? Did prostatitis cause heart disease? Without a report on the exact nature of the heart disease diagnosed and repaired, this speculation is obviously disabled. However, certain kinds of heart disease (endocarditis, pericarditis, cardiac myositis) can result from the kinds of infectious agents that can be hosted in prostates (bacteria, viruses). These cardiac diseases can theoretically then progress to various other cardiac failures, including valve failure. So if you are like, Christof, tell us more about the cardiac findings. It won't help too many other patients just because this is just such a rare scenario. It might just be interesting to see if we can tie everything together into one coherent pathological sequence.

Hey Dr. K!
I will try not to write a novel here... After your surgery, my abdominal pain centered around my umbilicus, and the terrible rectal and scrotal pain, improved remarkably... I still have occasional left testicle pain, but that is probably due to the benign nodule I had removed in 1996, since the pain never completely went away after having it removed.. The Cardiologist here, and the first one at Mayo, wrote me off as a nut (in my opinion).. My PMD actually quit on me after telling me to "quit chasing zebra's).. He thought I was a drug seeker I believe.. All I wanted was something for the incessant nausea..
The Mayo Cardiologist told me that my valve disease was "minor", and the Arrhythmia I had was in 30% of the population, and that "you need to get on with your life, you are fine"... Even wrote me a note to go back to ER work full time..
I got angry and demanded "the best you have"... Thus Dr. Kusumoto... He actually took the time to listen to me, then took all my studies home, including 2 weeks worth of tracings, and "stayed up until midnight, there was just something really odd going on"..

He gave me the choice of more studies, or "just go in and find what is going on"... I couldnt wait any longer, I had dropped 10 more pounds since you last saw me..
My AV node had split in two... My heart was beating from the bottom as well as the top, but at the same time. So that is why they could not see what was going on without real close study, as the waves were buried in each other.
He killed 15% of the area involved, and that did it.. The next day, I could feel the difference. I was no longer aware of my heart beating, as I had been for at least the last two years. I no longer got the heaviness in my chest, the pain in my neck, and the shortness of breath was gone.. I could eat without taking anti-emetics, could eat very large portions, and began gaining weight... I have been building my strength back, and although I still do not have the stamina I had pre-illness, I do not get completely worn out after only a couple hours of activity..
Now I am dealing with arthritic changes from such a drastic wasting and being bed-bound for months.. I have had injections in my neck and lumbar, it has made a big difference..
I am hopeful about returning to a somewhat normal sexual function, but as you are probably aware, the mental part is the hardest.. The "manhood" is gone.. Quite a mental thing to deal with. But, it has not even been a year, so I am optimistic..
I did have that really weird, stabbing pain high in my rectum the other night that I havent felt since surgery, I am sure it has to do with healing nerves..
I will keep you posted on how it goes from here. Only released to 4hrs a day "clinic" work now, not much call for that, so still out of work..

What a saga! I've never heard of a split AV node, so obviously I'll skip any effort to try to connect that with the prostatitis.

I can't imagine you losing another 10 pounds. I still have those photos we took with Hope. You were very very thin then.

Let's see what happens when you're 180 pounds. I'm optimistic.

I when't back to the doctor today and an got results from a blood CBC and the doctor said that there in is no infection or inflammation.
But still no more done to find out if i have prostatitis.

mike
I have had three different AB's but only for ten days
the first Doxycilne when i had a sore testicle but all it did was made my blood pressure high.
I was then given bactrim which knocked the infection and got rid off the pain.
3-4 weeks after the bactrim i found that ejaculation was restricted and urine flow was restricted i was then prescribed Keflx it did help but then 3 weeks later symptoms started to come back.
I was then put on bactrim i went back to the doctor after a week and he said that the prostate was probably just a bit inflamed and to just take some ibuprofen to reduce the inflammation so i just tried to put it out of my mind.When i finished the bactrim i felt ok so i just got some herbal supplements that help the immune system like echinacea and olive leaf extract which i have been taking after i finished the bactrim.it seems to help .
I think the short courses of antibiotics weren't long enough to get rid of all the bacteria.
Now the doc has the complete blood count i don't think i will ever get a diagnosis.
My symptoms aren't that bad at the moment hopefully my immune system is taking care of the infection.
If my symptoms get worse i will try a different doctor.
The thing that helps the most in not sitting for more than 20 min without geting up and walking around a bit.




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"At 10:07am on July 29, 2010, MikeS said…
Silent Reader, you and I have seen the same doctor. Funny, he basically said the same things to me about the prospects of prostate surgery. "

MikeS, when did you talk to Dr. A. about surgery? I asked him in Jan 09 when the trial just started and was wondering if he changed his mind with more results available. I don't see him anymore - moved away from the area. I wanted to see him just to ask this specific question before I move, but could not find the time. I've red on some blog that he even presented his patient (the one I was talking about) somewhere, but could not find any additional info about it.

Mike,
Thank you for the response. I saw him last August - got 1st prescription of Lyrica. Never came back - had subsequent prescriptions from my PCP (family doc). Stopped Lyrica 3 month later since it was not helping any. Side effects overweighted little benefits.
As for the symptoms - I feel the same. Some days it's OK - feels like I could take it for another 20-30 years, other days - not so good... On the bad days I take ibuprofen 800mg that was originally prescribed for my back. It helps somewhat.

Thanks, Yes all went well with the surgery and he is getting stronger everyday.

how ya travailing mate
any progress on what's wrong

i have finally seen the urologist
but still don't know what's wrong.
for me the pain comes and goes

Great photo. Between you and Nik we'll soon need to start a Daddy and Me group. :-O

Thanks for sharing.

From what i been told, if your having your prostate removed at a young age, its not a good idea. It affects your sex drive.
Unless you have prostate cancer, thats a different story.
When i mean young, i meant 50 and under.

hey, mike. i understand your frustration about your prostate. but once it goes , it goes.

i would say if you have cancer in the prostate at your age remove it. there is a lot of research being done on prostatitis. i think that finding a doctor that expects the challenge of an inflamed prostate would be a good choice. although i seen at least a dozen or more of doctors, i finally found one that

works with me and my symptoms. he did a urodynamics test on me and was able to figure out, why, i am having pelvic pain. the muscles of my bladder are working against the pelvic muscles.

i am getting therapy for that. and thats just the begining.