Nerve bundles both gone ... what are the possibilities if any?

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larryandangieohio
Regular Member


Date Joined Jan 2010
Total Posts : 44
   Posted 2/1/2010 2:08 PM (GMT -6)   
Ok guys .. I've been following the threads for some time now and have yet to see any links or conversations that talk about both nerve bundles being gone. Seems like most of you have been lucky enough to have had one side spared and can try Viagra, pumps, or injections, and TRUST ME HERE ... I am SOOOOOOOOOOOO happy for you guys!
What are the options for those of us that lost both nerve bundles? Are we left with the only option being an implant?
Larry

Age:58  PSA 8/06 8.74,  10/09 7.46,  12/22 6.50 Needle Biopsy  11/10/09: 16/16 cores positive 2 - 85% of tissue,

Gleason score 7 (3+4 with tertiary pattern 5). CT,Bone, and PET scans all negative.

Da Vinci laparoscopic prostatectomy performed on Jan. 07, 2010 at IU Simon Cancer Center…  Indianapolis, IN  Prostate size: 42 g Gleason score (primary + secondary):  4 + 3 = 7

Primary pattern (%):4, 60%  Secondary pattern (%): 3, 35%   Tertiary pattern (if present) (%): 5, 5%

Histologic type: Adenocarcinoma   Variant histology present: No   Multifocality: Yes

Extraprostatic extension: Yes   Seminal vesicle invasion: No   Cancer at surgical margin:No  

Bladder neck involvement: No    Lymph-vascular invasion: No    Perineural invasion: Yes

Catheter removed Jan-19-10  Dry Nights 2 pads/day  Baseline PSA checkup appt 2/3/10

 


Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 2/1/2010 2:14 PM (GMT -6)   
There have definitely been cases of having lost both nerve bundles and still having sexual function, albeit rare.
The injections will almost definitely work for you -- you just may need a higher dose than for someone who has partial function. Don't give up hope yet!
Gleason, 3+4; PSA, 7
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
cancer contained, no penetration, lymph nodes clear
PSA consistently <0.1 since surgery


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 2/1/2010 2:34 PM (GMT -6)   
I'm in that "both gone" category as well. Am 56, at DaVinci +14 weeks, so not much to tell yet. That will be the subject of the next doctor visit.
Post-op Gleason was 4+5, both sides.
Not even close to dry yet.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/1/2010 2:40 PM (GMT -6)   
I think injections will work for you. Let me tell you. Many of us that have nerves saved need the injections also. I am your age and understand you fears.

Hang in there buddy.

Jeff T
Cajun Country
Saints fan.
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 2/1/2010 4:25 PM (GMT -6)   
I am nearly two years out from non-nerve-sparing RRP, and injections and pump work well for me (though not at the same time!).

From about 14-months onwards I have seen some recovery in natural function. Occasional nocturnal erections, and a *lot* of manual stimulation while using a constriction band will produce a good erection -- but not always.

The pump works well enough, and the hinge effect that I used to have when using it is no longer there. If I can get it up with bands in place, it tends to stay up (with stimulation).

Even if I don't have any further natural recovery, I am happy with what I have now -- it's a lot better than it might have been. An implant is not on my radar.

Larry in your case, it is still early days, but you may well find that injections and the pump work for you. The important thing is not to give up on either without a good trial. It took me about 20 injections to get something reliable and about 20 attempts using the pump for intercourse to get something reliable there too.

Using the pump for "exercise" is easier, and is something I think is worth doing at least a few times a week. I don't think the oral ED drugs have any useful effect on the non-nerve-spared, but they are worth trying if you see some natural function returning. I tried Cialis, and that had only a very slight effect which might have been just wishful thinking.
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?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/1/2010 6:13 PM (GMT -6)   
I would agree with Piano that the ED drugs probably won't work. I lost the left side of my nerves and neither Viagra or Cialis would work after surgery. They both worked great prior to the PC Surgery.

However, Levitra works pretty well now. I'm also on Trimix which works fine. I would recommend experimenting with each one.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/2/2010 10:33 AM (GMT -6)   
I'm one of those with no nerve bundles. My doctor told me that medication will not help. I use the pump for rehab and trimix for sex. The trimix works fine for me with no pain. I'm seeing some improvement in willie. I can actually get 60% erection with stimulation and an occasional 50% nocturnal erection at night. I think that the nerves can regenerate themselves over time but it is a slow process and may never be enough. For now I rely on trimix.
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 in circumference.
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
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004

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