HealingWell
Search Close Search
☰

Eight months post radical Prostatectomy...no changes...YET!

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/9/2009 4:43 PM (GMT 0)
DaVinci robotic radical prostatectomy January 12, 2009 -
OK, it's been eight months now, since my nerve-sparing RADICAL prostatectomy and nothing has changed concerning my ability to achieve an erection. This so-called nerve sparing robotic surgery.....Do doctors give their patients false hope,telling them they preserved nerve bundles on one side of the prostate and will someday come back? Who's to know exactly how this leftover preservation of nerve bundles after removing the prostate will have on my future erectile success? Easy for the doc to tell me , "you'll be fine", but when? I am anxious that I may never get this back. Now I am hearing stories and reports that there are needless prostate surgeries performed nowadays,even though the slow growing cancer will probably not kill you at all, but something else could.
So, at 55 years of age, I sacrificed my ability to have erections,wearing diapers,and basically being very frustrated as a man, for what?

I guess what I'm asking is, has anyone out there who has had a radical prostatectomy about eight months ago,has gained any erections without the use of Viagra,Muse,or a vacuum Pump? eyes
Posted 9/9/2009 4:55 PM (GMT 0)
Me thinks it matters not what others have or have not done.

Maybe it'll make you feel better to know that after 14 months I'm in the No Can Do catagory...Unless I inject myself with Tri-Mix and then I'm one with the universe.

Posted 9/9/2009 6:12 PM (GMT 0)

Unhappycramper:

I had my DaVinci on 1/26/09; 2 weeks after yours. I've been taking 100mg of Viagra (alldaychemist) every day for at least 4 months with MD's blessing (started taking 50 mg every other day shortly after catheter was removed). In the last several weeks I've achieved a "semi" with manual stimulation every attempt. While I can't yet boast of a usable erection, I do see the light at the end of the tunnel. If I take the long view, I can see where this has been gradual, so I'm optimistic that trend will continue. I use the pump, but get better results from the above...........I'm not at the point where I want to try injections, preferring to give time a chance to do it's thing. So hang in there, because for the zillionth time on this site,.......... "we're all different" :-)

                                                Arnie

Posted 9/9/2009 6:19 PM (GMT 0)
Unhappy Camper, I am sorry for your frustration, the side effects of Ed and/or incontinence have no rhyme or reason. Please never give up hope, some say it takes up to 2 years or more.

To answer your question directly, I am in another rare club, only right nerve side spared, left side removed, and no ED from day one. Never used a pump, any pills, or injections. Even my own doctor is still baffled nearly 10 months later. It doesn't make sense, but its the truth. There's a handful of other men here that had little or no ED problems afterward. These exceptions, myself included, don't seem to be the norm.

Definitely can't compare one person to another, every body is different, every healing is different too. Hope things start to improve for you in those areas. Never lose sight of the main goal, to rid you of cancer.

David in SC
Posted 9/9/2009 6:49 PM (GMT 0)
Throw me in the camp at 11 months, 50% of the time I need Viagra to become usable...but as others have said...everyone is different.
Posted 9/9/2009 8:26 PM (GMT 0)
I understand your frustration, I am at almost 2.5 years I have sever leaking and ED as well, the ED however is secondary for me at this point. Incontinence is my major heartburn had any AUS implant done a couple weeks ago that is when I heard about the implant for erections also, I personally didn't go that route I want to clear the leaking up and then I will worry about the ED.

I think Doctors have to be positive since again we are all different healing take longer in some than others, doesn't seem fair but it is the way it is. I am not sure I buy into these reports of unnecessary PC treatments, I wonder how much of that is driven by insurance companies, I really don't think I would sleep good if I knew I had cancer slow growing or not and there are aggressive PC cells that could escape the capsule and get into lymph nodes or other parts

Give it some time, you may need to use a pump or drugs for the short term.

One thing I am sure of I'm glad that we can be here to put our thoughts out on this forum since there will be (globally) 250,000 men that will not be able to this year!!!
Posted 9/9/2009 11:55 PM (GMT 0)
Greetings, unhappycamper.  Sorry you continue to have difficulties.  Everybody is different. What works for one guy doesn't work for another.  I haven't used the pump or injections but regularly use levitra or cialis.  Both seem to work fine for me.  My doc did tell me it could take up to 2 years for both incontinence and ED issues to be taken care of.  I know it is frustrating but hang in there and keep looking for the right solutions that work for you.  David

Posted 9/10/2009 2:47 AM (GMT 0)
I didn't have DaVinci, but will share for the record of results from us post-surgery guys. open surgery, nerves spared, no response at all, 2 years after surgery. Bimix enables me to get along in the lovemaking department. The main thing I suppose we are saying with our reporting of our histories is we all are different and we cannot be compared to the next guy as to results, from whatever surgery we had.
Posted 9/10/2009 3:02 AM (GMT 0)
I am nine months out now, no problems with water works at all, and just starting to gain erections, with use of Meds, have not tried yet without meds.  Never favoured injections, and the pump did not work for me at all.  But If I can get an erection on demand with the use of meds, I recon thats pretty good, and I can live with that.

I would like to mention one very important thing thou, your mind and thoughts need to be in the mood for an erection, it wont just happen on its own. 

A very good sign of things changing for me was when I started getting nocturnal erections, particularly early in the mornings, this generally happens two to three times a week.

I know its easy to say, but good old anxiety can really get in the way here.  Just try and forget about the erection thing, and one day it will happen for you, when you are least expecting it.  It worked for me !....................Kev

 

Posted 9/10/2009 3:12 AM (GMT 0)
Unhappy: I am jusst shy of one year. Dr supposed to have seved the nerve spared on both sides. Nothing useable in the wood department. Not super happy with my dr dealing with ED. He seems unconcerend and always in a hurry. No problem with water works and at this point I think he got the Cancer out. I guess I should be very happy but my school teacher thoughts is 2 out of 3 is only 66%. He is very evasive about Ed. My next appointment will be interesting. I am going to ask for a referrel to a Dr that deals well with ED.

Very frustrated in cajun country.
\
Jeff T
Posted 9/10/2009 2:25 PM (GMT 0)
Hey Unhappy, Looks like we have entries all over the map. I am now about 7 months out and still nothing usable (except via Pump or MUSE) even though I have been doggedly cycling thru C, V and L regularly. Cannot say that any good nocturnals have started yet, unless they come and go unnoticed. HAVE been having very detailed and intricate dreams lately though -- much more than in the past -- so the REM sleep is certainly there (that is also when nocturnals are supposed to happen). Maybe it's just because I am getting up less often to urinate or something -- hah.
I do empathize with you on the worry scale though. Early on before 6 months you just figure, well, it's still way early. Now that I've gone past 6 months my concern is a little higher. I guess the big 12 month level will be even more of a concern. BUT as long as the PSA Zeroes keep coming on the later dates I guess I will be not too concerned about the zero in the ED department.
Keep on, keepin on ....
Posted 9/11/2009 2:57 AM (GMT 0)
I am 18 months out from non-nerve sparing surgery. From about 14 months I have been having occasional nocturnals, averaging about once every three weeks -- those are the ones I know about.

I am seeing other signs of life too. The "hinge effect" that I used to see with the pump is no longer there, I find that I don't need as much constriction as before, and a lot of extra manual stimulation enhances any erection. With only some constriction and a *lot* of massage, I can get it up to stuffable.

Promising signs, but coming slowly. And still no hint of a normal erection from thought or visual.

As my present supply of injections are nearly done, I am planning to retry the pump together with some samples of Cialis (will be my first time for those). If I can toss the injections for good, I will feel like I have graduated!
Posted 9/11/2009 3:00 PM (GMT 0)
Thanks to all the replies!
I do realize we are all individually different in the healing process.You can't blame me for being just a little curious on other's post-op results,or even being frustrated...did I mention we are human? This may be a little (TMI) too much Information,but we are guys,and we are all human. I will respond to what the Dr. told me about orgasms being more intense, and he was not kidding at all there, for me anyway. Thank my lucky stars, there's always that as a bonus. They do seem to last longer and they are indeed more intense than before the surgery. You're all right in the cancer-free department,tis much better NOT to have the cancer,even though there are the obvious side effects to deal with. Just a bump in the road,and hopefully this bump will be flattened. Thanks again for your honesty and response. Have a GREAT day!
Posted 9/11/2009 10:21 PM (GMT 0)
My doctor started me on Levitra as soon as the cath came out. I needed it 100% of the time to get a usable erection for the first 6 to 8 months post op. After that time I began to see improvement. I'm 13 months post op now and never need the Levitra.
Posted 9/11/2009 11:37 PM (GMT 0)
I feel your pain. In a few weeks I'll have my 1 year anniv since surgery. Altho I'm about 99% continent (still get an occasional stress leak when lifting something heavy), I have yet to achieve anything "usable" down below. A vac pump is unsatisfactory, up to .5 cc of trimix does nothing, and the only hope so far is a slight thickening after taking 20mg of Cialis and lots of manual stimulation.

To say I'm frustrated doesn't begin to describe how I feel. In spite of this, I still feel lucky to have a better change of living longer than I had a year ago, so I guess it all balances out in the long run.

I know it's tough, but I guess you have to stick it out and let things run their course, at least that's the philosophy I try to adhere to.

At 8 months, you are pretty much just getting into the first stages of ED recovery from what I read here, so there is a light at the end of the tunnel, just some of our tunnels are longer than others.

All the Best,

Ralph
Posted 9/12/2009 10:13 PM (GMT 0)
Help ! I live in Sydney Australia (very new to this online chat thing- now my first - be gentle !) and am finding it very difficult getting info from men of a similar age group (me 59). I had a radical prostatectomy in early May & my last two (3 monthly) PSA levels have been nil & am trying to deal with the loss of manhood (eg no erections, incontinence & and what appears to be a shorter penis. My main concern is, the past 6 years I was using 50mg testosterone gel as my reading was (& still is) less than lowest score on the normal range for men & am finding it difficult with afternoon energy levels as I have an active job. After much asking, the doc who did my surgery said it was OK to restart a half packet each day but my GP says not to take the chance so I am confused. Has any men out there with low levels of testosterone been through this ? My email address is [email protected] and I am able to check this every day so I would really appreciate any help. Thank You.
W.Ross
Posted 9/12/2009 10:16 PM (GMT 0)
Ralph, sorry to hear of your story on the ED front. It varies so very much. I hope in your case, you are just in a long tunnel with curves, and you just can't seem the light at the end yet, perhaps in another couple of curves. Good luck to you brother.
Posted 9/12/2009 10:19 PM (GMT 0)
W.Ross, hello and welcome to HW, glad you found us. We always look forward to a brother from down under.

Sorry need to be here, good news from your post, you are on the recovery side of things, you said you had some zero psa since your surgery, that is great news, and eradicating the cancer is the primary goal.

There are guys here better experienced in what you are asking directly, so hopefully they will be around soon to answer you fuller.

David in SC
Posted 9/12/2009 10:55 PM (GMT 0)
Hi W.Ross,

I am living on the Gold Coast, Australia, similar age, with very low testosterone, will send you an email................Kev

Posted 9/12/2009 11:24 PM (GMT 0)
Thank you Ralph & Kev for replying. As I see my GP again tomorrow morning, I will check for any to (my account) email now & again Mon morning around 6 am.
Thanks again. W.Ross
Posted 9/13/2009 3:02 AM (GMT 0)
Hey, Gunner, Unhappycamper
I'm two months out and am scared that I too have not seen progress on either front. Did you guys do kegels? Are you still? Is two months too soon to figure that things will not change and I need to do something else? Am I wasting my time kegeling?
Jeff
Posted 9/14/2009 10:33 AM (GMT 0)
So, at 55 years of age, I sacrificed my ability to have erections,wearing diapers,and basically being very frustrated as a man, for what?

To live to see 65.

I'm in the same boat as you and many others here. You are NOT alone! :) I also had the DaVinci procedure January/2009 with 100% nerves spared and no erections since. Zip. Nada. Zero. And I still leak to boot! However, I am alive and most likely will be in five years. That's not something to sneeze at. I lost a sister to breast cancer in March - it helps me when I keep things in perspective.

I try to stay positive and focus on what I can control. I wish I didn't have the problems I have now, but, gambling with cancer in any form seems quite foolish to me. At my age (and yours), removing the cancer is the only real choice we have. Prostate Cancer isn't the common cold - it can kill you. Go visit a cancer ward if you forget why you did this - cancer that gets out of control is devastating.

As it happens, I saw an ED specialist this past Wednesday. I asked about this 100% thing and why I wasn't having any real progress. He explained that while those nerves were saved, it's not a picnic for them during surgery and they go to "sleep" for many months after such a procedure. He told me it's not uncommon for those nerves to stay "asleep" for more than a year after a prostatectomy.


stories and reports that there are needless prostate surgeries performed nowadays

I've seen many of those same reports. Most, if not all, come from organizations that offer alternatives to surgery. Imagine that! Lest we forget: cancer is also big business.
Posted 9/22/2009 3:18 AM (GMT 0)
I am 55 had Radical Prostatectomy open surgery both nerves spared on May 14th 2009 Happily I am am now fine on incontinence.
I take 5 MG Cialis daily so far have had just a little results. (My Blue Cross is not covering any of it)
My Dr recommended me getting a pump.
If any of you have recommendations as to brands and manual vs. electric I would be interested to know. Feel free to email me at [email protected].


Age 55
4th Biopsy (frist 3 showed ASAP)
PSA 14
doubled 2 years in a row.
Pre Op Gleason score (3,3) 6
Post Op Gl;eason score (3,4) 7
Clear margins
PSA is now 0
Posted 10/5/2009 6:30 PM (GMT 0)
At about 4 1/2 months post surgery, the best I can get is an occasional "twinge" and some increased size with manual stimulation, but no stiffness. I'm on 25mg Viagra 3x a week, and when I've tried to penetrate the wife using a 100mg dose I get little or nothing at all. But I thought I heard or read something somewhere that said the spared nerve bundles regenerate at a rate of 2 centimeters a month. If that's true, what's the average length of the bundles? Does the entire length need to recover in order for erections to occur? What is the relation between the recovery time and the degree of trauma to the nerve bundles experienced during the surgery? I think if we had these kinds of technical specifications we could better project how long it will take to regain potency, and it would be a lot better than just saying, "well, we're all different so we all heal differently."


Greg
Posted 10/6/2009 2:53 AM (GMT 0)
Hey Unhappycramper, i had my surgery on 4/23/09 both nerves spared, 6 weeks after surgery i had usable erections without a pump or meds. i don't need viagra to achieve an erection but i do take them sometimes, My surgeon said it could take 18 months but everyone heals differently. As for the incontinence i am still using 1 pad a day 1 at night, started bio feedback on 8/23 /09 i feel it is helping, regards Jake
✚ New Topic ✚ Reply
12