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ED and potency recovery after surgery - we all heal differently - what are the stats?

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Posted 10/9/2009 11:23 AM (GMT -8)
Everything I read about ED post-surgery is very general, with recovery timelines averaging 6-24 months. There must be something more to it. 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." How is everyone else handling this (no pun intended), and in your responses, please indicate any information you can share regarding whether your surgeon thought your surgery was more or less difficult, and also indicate extent of nerve sparing. It would be great if there could be some way to associate individual experiences with some common data set.


Greg
Posted 10/9/2009 2:17 PM (GMT -8)
Hi Greg,

I had both bundles spared, no margins and the surgery wasn't difficult I'm told.

It took me a full year to obtain something hard enough for penetration.  It was a slow recovery which many times I felt wouldn't happen.  Terribly frustrating.  At 4 1/2 months, I wasn't getting much of anything.  Very slowly I noticed a little "chubbiness".  I didn't have anything that was even worthy of trying to use for penetration until around 11 months. I think the scariest part for me was when it was finally getting pretty good, but not good enough.  I always feared things had leveled off.  It sounds like you're ahead of where I was.

I know this isn't much of an answer to your question.  I can't really answer your question.  Just wanted to say hang in there and be patient.  It's an extremely frustrating and depressing part of this whole experience.  It seems you're on track to reach full recovery.

Dave 

 

Posted 10/9/2009 2:20 PM (GMT -8)
We have some guys on here with no nerves getting erections, Go figure !

Have you considered injections or Muse ? Many guys on here are finding them to be satisfactory.
Posted 10/9/2009 3:41 PM (GMT -8)
Dave, Shoot me an e-mail.
Posted 10/9/2009 3:49 PM (GMT -8)
Whoever said that nerves grow back at 2cm a month was a supreme optimist!. The figure I have seen is 1/8 inch per month, and that seems consistent with the also quoted 18 month to 2 years time for recovery. That would make the nerve path 3 inches long.

I was non-nerve-spared 19 months ago and have seen some signs of recovery: Occasional nocturnal erections -- about every 3 weeks for the ones I know about. The hinge effect I used to see with the pump is now mostly gone, I need less constriction and lots of manual stimulation now helps erections. I have had a very slight response to Cialis (10mg) in the form of slightly firmer erections, but it's not enough to justify popping the pills regularly.

After about 100 injections, I am taking a break from them. I started to notice a little sideways curvature, and am not a fan of injections anywhere, let alone "down there". For those reasons, and the fact that the pump is working better for me now, injections may be no more.

So for now, I will rely on the pump. I am still completely unable to think up an erection, not even a little chubbiness, so I still have a ways to go. But when I look back, I have seen progress.

So that's me with no nerves, but otherwise fit and healthy. Let's hope that those with various degrees of nerve sparing can travel this path more quickly.
Posted 10/9/2009 6:18 PM (GMT -8)
Greg -

I am just 3 wks postop, and not even thinking of ED recovery yet. I understand your frustration, though, and desire to project where you stand on the spectrum of full recovery. But please don't think like an engineer on this issue. The "technical specifications" of the autonomic nervous system in the male urogenital tract is INCREDIBLY complex! (See http://books.google.com/books?id=wGei9b9ZyUkC&pg=PA178&lpg=PA178&dq=rate+of+autonomic+nerve+regeneration&source=bl&ots=lsSLjBlfXy&sig=BioB8rgNZe_JwYylqlPJxFjujUU&hl=en&ei=-N_PSobBGoHj8QaWw82BBA&sa=X&oi=book_result&ct=result&resnum=5&ved=0CCQQ6AEwBA#v=onepage&q=&f=false )

Moreover, the rate of healing of a particular nerve is a function of how badly it was damaged, whether the "downstream" nerve sheath (think wire insulation) is intact, and whether the distal end of the nerve has died back or not. The experimental observation of 1mm growth per day for a cleanly severed nerve axon regrowing down it's own native nerve sheath has little bearing on regaining function, since that growing nerve has to actually connect to something to do its job. And many of the connections are made to other nerves inside a whole network of nerves, not directly from the prostic nerve plexus to the penis. So, just as your telephone call from point A to point B may be routed through Cleveland one day and Denver the next, the distance from point A to point B may have little relation to the network path taken.

So, I am sure that the collective experience of functional recovery that the men on this forum can provide is worth far more than an understanding of the anatomy and neuropathology. Just as we all grew at different rates during childhood and adolescence, probably all ended up at different heights and weights as adults, and will die at different ages, the "technical specifications" of mankind do not apply to any individual.

Doc
Posted 10/9/2009 7:28 PM (GMT -8)

I stick around this forum for a couple of reasons.  One , so that new guys can see that they might have a chosen treatment and then some cancer free years.  I am at 2 &3/4 now.  Another reason is more cautionary.  Despite liking and supporting my surgeon, I don't think he and his fellow professionals do a very good job of preparing us for post treatment reality. Most do not really want to talk about future erectile problems except in the abstract.  In my case, despite one side nerve sparing, I have lost all erectile reponse.  I am able to have a sex life because I am able to use BiMix injections.  Without that, it would be very different.  I understand that as men age ED becomes a reality for the majority, why do you suppose our prime time TV is overrun with Viagra and Cialis advertising.  However, in my case, even that doesn't work.

Greg, the question you ask is very good.  Doctors really do not know.  Most nerve growth projections that they talk about come either from a petri dish or from patient responses. The rest is statistics and guesses.  In the everyday world, some guys get erections in days, some months and some never.  I have not read any studies that do more than offer hopeful assurance.  It is at best, a crap shoot, and that is what we should all be told going into treatment.

Posted 10/9/2009 7:39 PM (GMT -8)
lifeguyd,

I agree with your sentiments on your post about ED, it is a blind crapshoot at best. Even in our small gathering of men, look at the vast variety of post surgery/treatment ED scenarios we have going. There are men that have been to the best of the best nerve sparing surgeons, had that done, and respond poorly to any ED treatment. Like you say, some for weeks, months, or even years, and for a few unfortunate, never again on their own. Then there are those that respond well with only one nerve bundled left or spared. I agree too, as much as I like my uro/surgeon, we spoke very little about ED implications pre-surgery in our talks. It was a given that more then likely I would lose it for a while or a long time. At my 3 month meeting post surgery, he seemed totally relieved that he didn't have to give his standard talk about "let's now talk about ED", because I was one of the rare fortunate ones, and had absolutely no ED problems post surgery, with only one nerve bundle, in my case, left alone with the surgical notes marked "appears damaged". I felt like I won the lottery on that one, as my wife and I fully reconciled to the fact that I might not work down there either for a long time, or even perhaps never.

The only thing I worry about in this thinking, is if all the facts were fully disclosed and all the data were out there, how many men would forgo treatment of their PC in exchange for not dealing with these major side effects?

David in SC
Posted 10/9/2009 7:57 PM (GMT -8)
David,



A fair question, and the conventional wisdom would be that extension of life is paramount; however, the quality of that life must be part of the individual decision-making process. Perhaps some would forego treatment if there were more advance information available about the possibility of significant ED in a given case. But isn't that the patient's right to know so that he can make an informed decision? The post-treatment quality of life is certainly something that I considered when I deliberated over my treatment options (surgery vs. radiation). I also considered that I want to be around to dance with my daughter on her wedding day (she is 12). Yet we must insist on full disclosure of all potential treatment side effects so that we can make the right personal choices that are in our own best interests as we, the patients, determine them to be.



Greg
Posted 10/10/2009 9:31 PM (GMT -8)
If you are twinging at 4 1/2 months you are on your way to recovery and twinging is a very good sign. I used a vacurect pump after surgery for therapy and intercourse not all that comfortable but it worked. I would pump it up while brushing my teeth, or in the shower just to keep blood flowing in that area. It was like excercise totally non sexual. It was 11 months to the day after surgery that one afternoon it stood out there by itself and said HELLO baby! Thanks to  a very co-operative loving wife who encouraged me all along and still is after three years. I can now get an erection suitable for intercourse without any pills or pump. I know it is frustrating but time will help. Just keep doing what you're doing if you are not excercising you're muscle I would encourage you to start excercising it.
Posted 10/11/2009 2:38 PM (GMT -8)

Greg,

My surgery was just 2 weeks after yours and my wife and I are also experiencing ED frustrations.  In my case, my surgeon indicated that he spared more than 50% of both nerve bundles.  He also emphatically stated that nerve bundles do not grow back.  They do heal over time, but do not actually increase in length. 

Since my catheter was removed, I've experienced erections which are about 50% of pre-surgery rigidity.  With ED meds (I've tried full strength of Cialis, Levitra, and Viagara), I get an extra 10-20%.  This is via manual stimulation - the days of just thinking about or seeing my wife naked and having an instant erection are apparently gone. 

On only 2 occasions (of twice weekly attempts) since surgery have I had an erection sufficient for penetration.  Both of those times, I rather quickly lost the erection and was unable to "satisfy" my wife sufficiently.  I do have a pump and have found the rings to be too painful to use for intercourse.  At my 6 month visit I intend on asking my doc for either a Bimix injection or gel.

Again, at this point I'm quite frustrated and (like 56pontiac) worry that I've leveled off and will never achieve a penetrable erection.  I am heartened by his post though. 

Not sure if this helps or not, just thought I'd add my experiences thus far to this thread

-Dave

Posted 10/11/2009 3:48 PM (GMT -8)
Greg,
Removal of the prostate means that ones plumbing has changed dramatically. When you think of how the dynamics of an erection work its amazing that it works at all. In time things will get better, they will never be back to normal as things are fundamentally different now, but you can be better than ever

Take a serious look at one of the available injection options. I myself was very reluctant to even consider that as an option, after one month of use I no longer care that my nerves have a long way to heal. I have erections of between 1.5 and 2 hours every single time I want them (2-3x a week), far far better than before I had surgery.

Think about this, you get erect and nothing interferes with your erection, kids barge in, no problem still up there, dog jumps on the bed again no problem still going, someone at the door, go see who it is, send them away and immediately go back to making love, hungry, make a quick sandwich, wolf it down, go back to bed and bingo no hoping to get firm again, it never went down. And its way cheaper than getting even generic Ed meds, and as we know those take a hit and miss approach, the shots (for me) have a 100% success track record so far
Posted 10/11/2009 4:26 PM (GMT -8)
Greg,
I had a non-sparing surgery and have seen some improvement over time. I can get 50% erection with stimulation. I don't take any ED drugs but I do use the pump several times a week. I don't know how long it takes for the nerves to regenerate but I believe they do. 2 years ago I had surgery for hyper hydrosis (sweaty) in my hands. The neurologist severed the nerves that control the sweating in my right hand. For 3 months my right palm was extremely dry that I had to use a moisturizer. After 3 months I began to notice some dampness and within six months my hand was sweating again. The neurologist was amazed how fast the nerves reconnected. I'm hoping for similar results on the ED front.
Posted 10/13/2009 4:25 AM (GMT -8)
I am 58 and I had my surgery two years ago and both nerves were spared.  I feel very blessed because I was able to get solid erections within a few weeks after the catheter was removed, though it did take a lot of manual stimulation to get and maintain them.  After about a year after my surgery,  I started seeing nocturnal and morning erections, and now I have a rock solid erection every moring when I get up.  The one thing that is different is that I can no longer get an erection from mental or visual stimulation like I use to before surgery.  Before surgery, just the sight of a naked woman , or the thought of sex, was enough to get me a rock solid erection.  Now, after my surgery. I can look at naked women and think about sex 24-7 and nothing happens. Now the only way I can get and maintain an erection is through a lot of manual stimulation.  


Posted 10/13/2009 6:06 AM (GMT -8)

Greetings, everyone.  Good discussion.  I have said many times before how very pleased I have been with my medical team.  Before surgery, my surgeon spent an hour with my wife and I going over every aspect of the surgery.  He asked very pointed questions and gave very specific input regarding post surgery intimacy.  He gave us a form to fill out and return that asked lots of questions.  He told us very specifically that based on his tracking of patients that about 90% of those who could get erections prior to surgery would be able to fully function with the aid of meds at the 2 year point.  He very pointedly said that we should expect issues for up to 2 years. 

At my last appointment about 10 days ago he asked very direct questions about how things were going.  I am about 4 months short of the 2 year mark.  He continues to say that I have done better than nearly all of his patients but he says he believes that is because of 2 things.  I am younger than most of his patients and I had absolutely no issues prior to surgery and was able to function very well.  Some of you may remember that I have posted previously that I did very well almost immediately after the catheter came out.  I got to about 80% of what it was previously just 3 days after catheter removal.  However, it never got any better and in fact regressed.  When I started taking Levitra or Cialis I immediately went to 100% of presurgery in size and firmness.  I had always had an aversion to taking drugs but post surgery I take several.  I've had to learn that meds are your friends.

I realize I am one of the fortunate ones and am very thankful.  Discussions like this and also being able to chime in and try to give input to the new folks are the main reasons I hang around.  I'm grateful to be a part of this group.  I have received more than I can ever give back.  David

Posted 10/13/2009 11:00 AM (GMT -8)
I am almost 4 years post open RP with both nerves supposedly spared. I still have no natural erections and the chances of that ever happening at this point are very slim. My doctor told me before hand that nerve sparing didn't guarrantee a return of erections, but he told me about the big 3 oral meds (which don't do anything for me) as well as Trimix injections. Well, it took me 6 months to get enough nerve to stick a needle into Mr. Happy and when I did he stood at full attention to thank me. It took a few tries to get the dosage right (.12ml works for me) and to find the right needles (31g 1/2cc) but my wife and I enjoyed the learning experience very much. I have an occasional failure but they are few and far between and that used to happen once in awhile before my surgery. I guess my point is this: The reality of ED is that some of us (me included) may never regain natural erections but if you are motivated enough there are ways to return to a active fullfilling love life with your wife. If you are too proud or afraid to stick a little tiny needle into yourself, you and your wife may miss out on years of an important part of life. It may not work for everyone but isn't it worth a few tries?

Best of luck to you all,

Allan
Posted 10/13/2009 1:02 PM (GMT -8)
I think we need to remember to tell ourselves that we 'may' have had the same problem without the PCa. Ed is a natural occurrance in a pretty large amount of the general population with age, so maybe we can't blame it all on our treatments here.?
Posted 10/13/2009 1:04 PM (GMT -8)
Allan, what a great attitude your post presented, my hat is off to you
Posted 10/13/2009 1:06 PM (GMT -8)
Hey NY-Sooner,
I remember those days....
Please tell me you are 22. OK? Yea, that's the ticket, you're 22... Sigh...
Jeff
Just for the record, it's been almost 3 months and I just got my first "twinge" yesterday. Progress?
Posted 10/14/2009 1:46 AM (GMT -8)

Dave7 said...
Hi Greg,
I had both bundles spared, no margins and the surgery wasn't difficult I'm told.



It took me a full year to obtain something hard enough for penetration. It was a slow recovery which many times I felt wouldn't happen. Terribly frustrating. At 4 1/2 months, I wasn't getting much of anything. Very slowly I noticed a little "chubbiness". I didn't have anything that was even worthy of trying to use for penetration until around 11 months. I think the scariest part for me was when it was finally getting pretty good, but not good enough. I always feared things had leveled off. It sounds like you're ahead of where I was.



I know this isn't much of an answer to your question. I can't really answer your question. Just wanted to say hang in there and be patient. It's an extremely frustrating and depressing part of this whole experience. It seems you're on track to reach full recovery.



Dave

Hi Dave you are further along in your recovery i am over 2 years post op now and have sex life with or without oral meds...however as you said it was NOT good enough ... did you continue to improve beyond the 2 year period ? how is it now days ? 3 years after ....


GB
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