Erection without the nerve bundles

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Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2358
   Posted 8/5/2009 4:39 PM (GMT -6)   
As you can see from my signature, I had both nerve bundles removed. Lately, I've noticed a slight enlargement at night. Last night, I tried stimulating my self without the use of medication or injection and was able to get to almost a usable erection. How is this possible? Do the nerves regenerate? Has anyone on this forum who had their nerves removed recovered from ED?
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 657
   Posted 8/5/2009 4:56 PM (GMT -6)   

Ed, IMO that's very good news for you. Hope it continues. I supposedly had both nerve bundles spared and you are doing a lot better than me if you got to "almost" without meds or VED. There are guys that have had both nerves spared and have nothing. There are others with maybe one or nothing that can do better. I haven't found anything conclusive statistically and not sure it's even been studied properly...that I have found. Everyone is different. Good for you.

 

Mike 


Lower left groin hernia: mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3..... PSA June of 2008: 7.3
14 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
Barium enema X-ray (March 09 due to several days of blood in stool)
MRI with endorectal coil (April 09 as part of a study)
3D advanced TRUS (April 09 as part of a study)
CT (April 09 as part of a study)
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24283
   Posted 8/5/2009 8:17 PM (GMT -6)   
ED,

THat is good news, why it is happening, I doubt even your dr. could tell you. Hopes its the start of good things to come. After my surgery, I was told no nerve saving either side, later it was changed to left side gone, right side damaged, and yet, I have had zero ED problem right out of the box. Even my own heavily experienced dr/surgeon is happy for me but baffled, because there is no logical reason for my good fortune. That's why us men should never give up hope or patience, we all know that PC plays its own rules and follows no pattern.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2358
   Posted 8/5/2009 8:23 PM (GMT -6)   
Thank you Mike and David, I hope this is good sign for the future rather than a one time occurrence.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24283
   Posted 8/5/2009 8:28 PM (GMT -6)   
Ed, I am quite sure that you and your winky go back a long time together, sure the two of you will work out things, lol.
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2621
   Posted 8/5/2009 10:55 PM (GMT -6)   
If many more of you guys come forward with these stories, I may go in and have my nerves cut !

I thought I was so smart having DaVinci nerve sparing, and Willie lies dead in pants.

Whatever, congrats ! Hopefully I'll get mine doing something without artificial respiration soon !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 845
   Posted 8/6/2009 12:38 AM (GMT -6)   
Nerves do regenerate -- in some better than others. I have seen a figure quoted of about 1/8 inch per month, which squares nicely with the 18 months to two years figure I've also seen quoted for nerve sparing recovery.

The usual medical advice is that if you are non-nerve-spared, you are unlikely to recover normal function. Some sources say bluntly that you won't recover, period. Others say about a 5% chance of recovery -- I prefer to believe that! For two members who did recover something, see this thread: ED -- Maybe time is the best medicine?

I had non-nerve sparing surgery 17 months ago. From about 14 months, I have been having occasional nocturnal erections. If I wasn't dreaming, the first one was really solid. Not used or even attempted shakehead -- I have a feeling they won't last very long. Hint: Kegels seem to help.

At other times, I also see the occasional thickening and I have been able to musterbate up to a stuffable erection without any aids other than a rubber band. This is something I wasn't able to do at about two weeks. However I find it needs a lot of stimulation, so much so, that I still see injections in my immediate future. However, Cialis is at hand....
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.
14 months: Occasional nocturnal erections.

Post Edited (Piano) : 8/5/2009 11:41:07 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24283
   Posted 8/6/2009 8:49 AM (GMT -6)   
We should take a poll here, no names needed, and divide it up: non-nerve sparing, left side saved, right side save, both sides spared, and see who has ED at 6 months out and 12 months out, and 24 months out if applicable. I would also be curious too if there would be room to log whether it was open or robotic surgery. I have some theories going on in my head, but no numbers to prove even what I am thinking. More of a gut feeling thing.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2358
   Posted 8/6/2009 1:37 PM (GMT -6)   
David,
That is a good idea. Would you care to get it going?
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24283
   Posted 8/6/2009 2:50 PM (GMT -6)   
ED, I have the time, but not sure I would know how to set it up. The results would probably be all over the place, we have guys here 2 years out from nerve sparing robotic surgery with total ED and guys with open surgery non-sparing without ED. Just more of the cruel nature of PC.

David
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 657
   Posted 8/6/2009 3:48 PM (GMT -6)   
I believe one of posters here is an engineer and also taught statistics at college level.
 
Mike
Lower left groin hernia: mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3..... PSA June of 2008: 7.3
14 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
Barium enema X-ray (March 09 due to several days of blood in stool)
MRI with endorectal coil (April 09 as part of a study)
3D advanced TRUS (April 09 as part of a study)
CT (April 09 as part of a study)
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/7/2009 11:29 AM (GMT -6)   
Woops, that sounds a lot like I'm being called. I'll try to put something together in the next couple of days. I'm not sure that we will get enough data to be meaningful, but at least we can look at the trends.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24283
   Posted 8/7/2009 12:03 PM (GMT -6)   
i get the big bucks for being my idea, geezer gets bucks too for putting it together
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 657
   Posted 8/8/2009 1:43 PM (GMT -6)   

I'll wave any agent's fees for getting you two together...seriously though, I think it's a good idea. I did a few courses in stats and probability my last time in college. Haven't applied enough of it over the years to be of much use. Didn't want to put geezer on the spot mentioning names, and glad he stepped up.

Mike 

 


-Hernia, mesh and large scar, surgery early 2006
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Bone scan Dec 08: Negative
-Barium enema X-ray March 09: Small diverticulosis
-MRI with endorectal coil (April 09 as part of a study)
-3D advanced TRUS (April 09 as part of a study)
-CT (April 09 as part of a study)
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.


jimmyd51
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/9/2009 10:45 AM (GMT -6)   
i had my da vinci surgery 4/20/09.  they removed one nerve bundle and left the other.  said it was too dangerous to leave both.  have been continent since 2 weeks after my cather removal on 4/29/09.  been taking Cialis daily since 5/21/09 when the doctor released me.  have many questions but one that bothers me is i have penile pain periodically is this normal?  also have been using a VED periodically but still see a lot of shrinkage.  plus even with a VED there is no erection firm enough for penetration.  How long does this go on?  will post my facts on the biopsy and all when i get them.  was not really interested when the doctor asked me if i wanted a copy.  surgery was done by Dr. Koch at the Indiana University Cancer Center.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2358
   Posted 8/9/2009 12:10 PM (GMT -6)   
Jimmyd,
Recovering from ED id different for everyone. There is no standard time for recovery from it. I use the VED for rehab which is not sufficient for intercourse. I now use .3 ml of trimix along with the pump and it works every time. In my case, both nerve bundles were removed but for the first time I started noticing some enlargement at night (semi erection) and I can get close to 75% erection with a lot of visual and physical stimulation. I don't know if I'll ever reach a natural erection but at least I see improvement. My doctor didn't prescribe ED meds and thought it would be pointless but I'm going to try anyway. As far as the pain you are having, I recommend that you talk to your doctor about it.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


jimmyd51
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/9/2009 2:23 PM (GMT -6)   
i intend to do that.  my next appointment is not until Novemver but i will try to schedule one earlier.  its not a constant pain just every now and then, and does not last but a few minutes.  thought it might just be part of the healing process. 
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