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Posted 8/16/2009 8:07 PM (GMT 0)
Here is a link to my first report on the ED questionnaire based on the responses of 55 members.

129.25.64.85/snew002.pdf

This just reports the raw numbers for each question -- I will work on a comparative report that compares answers to different questions.

By the way, the survey is still active and you can still take it at

129.25.64.85/new002.htm
Posted 8/16/2009 8:23 PM (GMT 0)
This is consistent with doctors who say that 80% are restored to sexual activity, and advocacy groups saying yes but to what degree? By that I mean advocacy groups advertise that sexual function does return but many with aids and many not to the same level of performance. But the majority are doing quite well..

Tony
Posted 8/16/2009 8:28 PM (GMT 0)
geezer, one thing that surprises me, i thought there were way more robotics than open surgeries here ,but based on the raw numbers, not the case, perhaps I just hear about more. Good raw numbers thought, I appreciate all your effort on this.

David in sC
Posted 8/16/2009 8:36 PM (GMT 0)
It surprised me too, on the other hand, 20% or the respondents were more than 88 weeks post surgery
Posted 8/16/2009 9:16 PM (GMT 0)
Surgery for PCa is about 50/50 open versus robotic. Many areas don't have a nearby DaVinci system. Until two years ago Las Vegas had one system in town and three doctors using it. We now have 5 systems but still in Las Vegas you are more likely to have an open procedure if you have it locally. I went to SoCal for mine...

Tony
Posted 8/16/2009 9:37 PM (GMT 0)
Last November, only 15 Prostate Surgeries had been done in the greater Greenville area, by one of the partners of my own surgeon, even he suggested that more practice was needed. I agreed in a heart beat. Didn't wish to be the learning curve. Now all 4 major hospital systems in my region do them on a regular basis.

David in SC
Posted 8/17/2009 1:10 AM (GMT 0)

Thanks for gathering this information.  One thing that was not clear to me was the relationship between pills, pumps, shots and the actual sexual performance.  As an example, I am Not able to get any erection with or without pills, but I always get a full erection with a bi-mix shot.  So I answered that I was ready to go everytime.   Without the shot I get NO erection at all. 

I am not entirely sure how my doctor scores that one, but to me it is 100% failure.  The only way I reverse that failure is with shots.  I don't think your survey related that information correctly.  Maybe you should have first asked if an erection was possible without shots, pills or pump.  That would be my definition of success.  What do you think?

Posted 8/17/2009 4:22 PM (GMT 0)
From what I have read, doctors score it as a success if you can get it done with pills while if you have to use shots you are still in the ED category. Of course there are always those who inflate their statistics by ignoring how their patients get "inflated"

I'll try some more analysis about what is used. One thing that I missed was not asking about the use of pills etc before treatment. I suspect that there is some bias in the medical community that by the time you are old enough to be treated for PC you are also old enough to be having ED issues before treatment
Posted 8/17/2009 4:52 PM (GMT 0)

geezer99 said...
From what I have read, doctors score it as a success if you can get it done with pills while if you have to use shots you are still in the ED category. Of course there are always those who inflate their statistics by ignoring how their patients get "inflated"

I'll try some more analysis about what is used. One thing that I missed was not asking about the use of pills etc before treatment. I suspect that there is some bias in the medical community that by the time you are old enough to be treated for PC you are also old enough to be having ED issues before treatment

I think you are right that many urologists assume that ED existed before surgery.  However your raw results seem to indicate that (at least with this group) it is not the case.  In fact it seems a majority of your responders indicated no erectile problems before surgery. They also seemed to indicate that their post surgery success was due to pills and shots.  Another thing that might help understand what is happening is to relate the age at surgery to the erectile success.

As I pointed out, it is also important to know the number of patients who had complete erectile success without pills or shots or pumps.   That is my definition of success.

thanks...

Posted 8/17/2009 6:37 PM (GMT 0)
This is such good data. So much can be learned. I'm still on the short end of recovery and don't know if I am a member of the ED team. In general, how many weeks after surgery does it take before you know where you stand (or not)? One partial nerve sparing. One gone.
Plotting and correlating these data (open vs. robot) and vs. time will really help future guys make decisions. Thanks for your efforts.
Jeff
Posted 8/17/2009 10:37 PM (GMT 0)
I found the information useful but it would have been good to see a correlation between say.

1) one side spared + levitra+ erection %+ penetration= success rate %

2) one side spared + muse + erection % + penetration = success rate %

3)  one side spared + injection + erection % + penetration = success rate %

That type of thing.  I do have a question?  Do any of you guys with one side spared have a good erection taking levitra or one of the other pills consistently?

Posted 8/17/2009 11:56 PM (GMT 0)
romeo, i have one side spared, and have had natural errections from day one. an extreme rarity
Posted 8/18/2009 12:45 AM (GMT 0)

Purgatory said...
romeo, i have one side spared, and have had natural errections from day one. an extreme rarity

That is the point I'm trying to make.  You are a success because post surgery (or seeds) you do not require pills or shots to get an erectiion.  Anyone who requires pills or shots to get an erection should be chalked up as a failure by the surgeon unless they had pre surgery problems.  Anyone who can't get and erection even with pills or shots should get a refund.

I don't mean to sound harsh, I am glad that shots work for me.  However, I think the post surgery statistics from doctors regarding erections are totally inaccurate.

Posted 8/18/2009 2:34 AM (GMT 0)
David I think that I am the same as you only had one side spared (not sure which side) I am now getting good strong erections which should be plenty good enough for penetration (cannot try yet only 3 weeks after operation) and had open surgery like you
Posted 8/18/2009 2:47 AM (GMT 0)
Colin - don't dare try anything this soon, know you won't, there's a lot of delicate suturing and stiching inside you, resist the temptation at all costs. My own surgeon and my new Radiation Oncologist are equally amazed that I have had no ED, never even used a pump. They both agree that it makes no medical sense, but if I work, I work.

lifegud - I fully understand your anger and frustration on the subject, it effects most men after surgery, and I agree, I think all the overly positive stats on post surgery ED is grossly overstated at the least. When you read in detail, the nuances of our operations, its a miracle than anybody ever has an errection on their own. RP is considered one of the more complex surgeries out there. And like I tell others, its not like the surgeon is following dotted lines or little lights showing the cancer cells or the intracies of the nerve bundles.

David in SC
Posted 8/18/2009 3:02 AM (GMT 0)
Thanks for the concern but I will not try anything to soon (how long after should I wait) if you remember when I was choosing my doctor the ED side did not concern me I was more worried about the continence side so I can be patient and any joy I get will be a bonus Good luck for today
Posted 8/18/2009 3:10 AM (GMT 0)
Colin, your thinking is in the right and normal order for us surgery guys. It's get the cancer first, then work on the incontinence if any, then see where you stand ED. Just follow your doctors instructions on the healing part and the healing schedule, and you should continue to do fine.
Posted 8/18/2009 3:33 AM (GMT 0)
Thanks David but I think the doctor attitude in Thailand is different I have been given no advice about incontinence or ED I even had to ask how long before I could pick up baby I do not have an appointment to see the doctor till 3 months time for a PSA test so I have had no instructions about how long to wait before having sex (maybe he did not think that I was going to be able to have sex)
Posted 8/18/2009 4:35 PM (GMT 0)
So when the doctors as discussing their success rate they are listing the rate of success with no drugs or injections and after what period of time....2 years?  Or are they listing the rate of success utilizing anytype of means necessary.  Pills, injections, muse etc. at the end of the 2 year period?  Just listening to everyone it seems the injections work 100% or close to it but as in my case come with side effects or potential side effects like a 6 hour erection.  It is interesting in a way when you think about how things change in importance.  First your big concern is living and once you work through that initial issue you just want to make it through the day dry and then after that you want to be secretariat again!  Well I guess that is part of life and what we should strive for.
Posted 8/19/2009 12:16 AM (GMT 0)
We're probably veering slightly OT here, but this is a very interesting thread. My own personal experience is nerves spared on both sides BUT my surgeon went on to indicate percentage of each nerve spared (> 50% each side, he couldn't/wouldn't specify further). Prior to surgery I never considered percentage of nerve spared, just a binary saved or not saved. I'm not sure what to make of this regarding my potential to achieve penetrable erections. Right now (2.5 months post surgery) I can achieve only about 50% of previous excellent function - unfortunately not enough for penetration. This is with or without ED Meds. I've tried VED and neither I or my wife like the erection quality at all (feels artifical, like wearing 3 condoms and I can't wait to get the ring off).

Personally, I would consider success to be useable erections with ED meds. The ED meds still allow the spontaneity that I (we) desire and are only a minor inconvenience, imo. Regarding the expense, I use All Day Chemist which is a very reasonable alternative, as discussed periodically on this forum.

Has anyone else had their docs indicate percentage of nerves spared and whether we should consider anything greater than a certain percentage to be the binary 1, "nerve spared".
Posted 8/19/2009 1:50 AM (GMT 0)

Steph,

my doctor just told me the left side was not touched and the right side was cut into so he called is disturbed one time and then then next time told me that "well let's just say you had one side spared". So I am not sure but can tell you that I am getting better but not sure how good it will get but then again I am not 9 months into this thing yet so I am hopeful.

Posted 10/4/2009 11:47 AM (GMT 0)
This is the kind of survey I'd like to see published with each Uro.
And one for incontinence too.
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