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Nerve sparing surgery and erections

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Posted 7/31/2014 12:21 AM (GMT 0)
1. I read that some of you have had bilateral nerve sparing surgery, yet you still suffer ED. How does one check that the nerves were spared and that the surgeon was true to his word? I guess if it was done on the DAVinci machine, one could always ask for a copy of the video - they do record the whole procedure!

2. I was "told" that some of my nerves were spared (on the left side). Well I went from a reasonable good erection a few weeks post surgery to flat and now almost 9 months later there is "movement" - albeit assisted movement - at the station.

3. Trimix -- it works and then it does NOT work. My first batch expired and I'm now on my second batch. How long do these things last?

4. Although Viagra, Cialis and Levitra did not show effects for almost 6 months, they do show results nowadays, that’s encouraging! So to all of you out there, who have had disappointing results in the beginning, give PDE5 another GO. It might just work.
Posted 7/31/2014 1:21 AM (GMT 0)
Always good to hear "something" is working. I'm 18 months out, no erections, Cialis not doing anything. Surgeon said we'd get more aggressive, but I've elected to give it a few more months.
Posted 7/31/2014 1:32 AM (GMT 0)
waleygator:
At 18 months my situation was the same as yours. I am now at 28 months, and just in the last 2 months I have started getting some erectile function back. Not back to normal, but something useful. So it can take awhile.
Posted 7/31/2014 1:46 AM (GMT 0)
Wally Gator,

I don't know if you've heard the rumors that things shrivel up and fall off if you don't do some sort of penile rehabilitation. I'm here to tell you that they're not true. Nothing falls off.

I don't think you are doing yourself any favors by waiting further at this point. If you are not ready to try injections, get a VED. They're better than nothing...
Posted 7/31/2014 2:14 AM (GMT 0)
PSA3DOT7,

You can ask for a copy of the surgeon's report. The problem is probably not whether the procedure was performed or not, or whether it was performed optimally. The problem is the term "nerve sparing." It seems to imply that everything should function as good as new if they were properly spared. Sadly, not so, and for several reasons:

  • Think of trying to extirpate a tree without breaking any roots - it can't be done.
  • Nerve sparing is also a relative term with RP - the surgeon may be forced to cut wider if he thinks there's some cancer nearby.
  • Even if the nerves are perfectly spared, they may stop working. It's delicate electronic equipment that doesn't like to be tampered with


A big part of the problem is that surgeons and/or patients inflate expectations. See:
Reasonable expectations for erectile recovery after surgery

- Allen
Posted 7/31/2014 2:53 AM (GMT 0)
First of all, "nerve sparing" doesn't mean there isn't nerve damage just from the act of getting the prostate out through surgery. If you've ever seen a video of the surgery, and I have, you have to think of the prostate as an orange and the nerves that allow for erection as being taped on to the orange. So the robot basically teases or lifts off the nerves from the prostate and then removes it. The act of teasing or lifting off the nerves from the orange damages the nerves. For how long, that is the $64,000 question (reference to game show in the 50's). For some guys who are young and have super robotic doctors like Dr. Samadi in NYC you can have full recovery. For some of us out here in the hinterland with middle of the road robotic doctors we may never get back full recovery. Oh well, you throw the dice and take your chances. There is a guy on here, John T, who states permanent ED from surgery versus radiation is 50% versus 35%. All the research I've seen seems to support his conclusions dead on. That doesn't mean you can't get full recovery after surgery but the odds are 50/50 with a run of the mill urological surgeon. Anyway, I had severe BPH before surgery and now I can sleep much better with only getting up one time/night instead of every 2 hours. Radiation treatments do not improve BPH symptoms. Trimix ain't a whole lot of fun but life is full of compromises.......
Posted 7/31/2014 6:14 AM (GMT 0)
Sorry to hear that some of you are still fighting the ED demon. I boasted 6 week post surgery that I could still have good erections. A few “conservatives” on this forum said “just wait”; My ED nurse echoed similar sentiments. Could have been one of those self fulfilling prophesies touted as "you gotta be realistic", so lo and behold, a few months later I was as flat as a blade. I then tried every PDE5i, for which I paid exorbitant prices, to no avail.

I also had very LOW testosterone. Most Oncologists don't LIKE testosterone, many men are chemically castrated by denying them access to the hormone. Well since I went onto HRT with Testosterone gel things improved slightly, but my free testosterone was still well below the average. I have since gone onto Nibido (3 monthly testosterone andecanoate) and there is movement at the station. I can understand the reluctance of doctors to prescribe HRT; but I attribute some of my “return” to normalcy (not there yet) to this hormone.

Another key factor is, you have to get/be HORNY for the PDE5i or TRIMIX to work. There is just no way that you'll get an erection if the signals never leave the brain; and this is the most difficult part. Feeling horny whilst you have a catheter in or you're still on pads is not the easiest thing. As someone on this forum once said --” the operation robbed me of having fantasies” and that's true. Let me encourage you to persevere ….don't give up!
Posted 7/31/2014 11:16 AM (GMT 0)
I agree with Peter, nothing falls off, but to maintain size and function you should do penile rehab with a VED. I'm almost 5 years out and have never had an erection without the VED and cock ring. I've been taking T for almost 3 years and my levels stay over 1000,and that is great for mood,energy and libido but alas does not help in the erection department. I had "nerve sparing" robotic…so it goes.Regards Inkhorn
Posted 7/31/2014 11:19 AM (GMT 0)
PSA,

Concerning your question on how long Trimix lasts .... I've used Trimix that is more than a year past it's expiration date and it worked well. I did keep it refrigerated. When I started on Trimix, over five years ago, the same question was asked on the USTOO Wiki and there were long discussions on the safety of using expired Trimix. The bottom line I came away with is that it was safe. I think there has been similar discussions, in the past, on this forum. You may want to try a search.

I agree with you on the PDE5s. For me, it took a long time before they started working. If I use them (even Levitra) after eating, the results are poor. Also, poor results if I am not really in the mood or stressed. Like to use them on vacation ... easier than Trimix when traveling.
Posted 7/31/2014 12:27 PM (GMT 0)
PSA3.7,

You said...
Another key factor is, you have to get/be HORNY for the PDE5i or TRIMIX to work.

Just for the record, you are mistaken about trimix. It acts in the same fashion as the nitric oxide released in response to the nerve signals. Trimix will work while doing your taxes.

You are right about PDE5i drugs. They won't work with severe damage to the erectile nerves or really bad psychogenic ED.

Oh, and as for trimix working sometimes but not others, have you noticed a tendency for it to work better if you stand up, and to fail more often if you lay down? That is a fairly common problem for men with a venous leak.
Posted 7/31/2014 2:53 PM (GMT 0)
Just my take on "Nerve Sparing" surgery. I asked Dr. Timothy Boone at Methodist Hospital, Houston, also the Professor of Urology at Baylor College of Med. about Nerve Sparing surgery.

He said there were no conclusive evidence that requesting the surgery did any difference to maintain your ability to have an erection. In fact he mentioned, "do not all surgeons want to spare nerves? Why should you request it when he should be doing it?"

It sounded logical to me anyway..

I believe that surgery down there has lots of complications. I also have total ED (Boone was not my surgeon and I had total removal of the bladder and prostate) but he did not believe my surgeon did anything wrong. Suggested Trimix.. Have yet to go there but want to.

NEO
Posted 7/31/2014 8:08 PM (GMT 0)

inkhorn said...
I agree with Peter, nothing falls off, but to maintain size and function you should do penile rehab with a VED. I'm almost 5 years out and have never had an erection without the VED and cock ring. I've been taking T for almost 3 years and my levels stay over 1000,and that is great for mood,energy and libido but alas does not help in the erection department. I had "nerve sparing" robotic…so it goes.Regards Inkhorn

Hopefully this won't be too far OT, if so mods feel free to move it somewhere or edit/delete: Some (a lot of?)folks here have expressed at least suspicion that injections can cause Peyronie's(PD), though Mulhall denies it. Or at least says there is no evidence of that. One thing many experts seem to think raises your risk for PD is trauma, such as might happen when trying to get er done with inadequate inflation.

But what about rings used with pumps? They sometimes slip off the pump with a pretty good snap, though I must say it usually does not hurt(much). And I think it might be gripping down below the part that is well pumped up. Is that correct, not pumped up below the cylinder(not sure)? If so, I just started wondering if that could do some damage? The severity of the snap varies from time to time and according to what ring is used. This morning with an Osbon Erecaid single pink medium size high tension, I thought it had cut it off for a second or 2. SNAP! (sure did maintain things though!) I've decided I either ordered too small or to much tension, but that and the ones that came with my pump is what I have for now.

I know about being careful with a pump either for rehab or fun, and I am, but it has just been occurring to me that snap could be traumatic, and trauma is to be avoided. Any opinions? Inkhorn, I notice you have PD, and you are a 5 year pump/ring user. Have you ever injected?
Posted 7/31/2014 9:22 PM (GMT 0)
There a couple of different techniques of nerve sparing surgery, one is more invasive than the other. One technique can lead to a larger chance of positive surgical margin than the other. Also electro-cauterization within a couple of millimeters can damage the nerve. Some nerves are gently removed easier than other nerves. No two people are alike and when it comes to physiology of a person there are no guarantees. As for trusting your doctor, you should have determined that during you screening. If you not comfortable with your physician, then you should keep looking.

I had both nerves spared and even before I had the catheter removed I was experiencing erections.
Posted 8/3/2014 2:51 PM (GMT 0)
PSA:

I highly recommend that you read Dr. Mulhall's book (link below). It will answer many of your questions above.

A few points from me:
1) I also used to have mixed results with injections. Sometimes great, sometimes nothing. Dr. Mulhall explained to me that when a guy feels stressed/anxious, his body produces adrenaline which kills erections. So, try to relax (a lot) and not worry about whether you'll get an erection, because the worrying itself will prevent the trimix from working.

2) The pattern of ED after surgery is usually that the worst ED is at the 3-month point. So, you might have gotten erections shortly after surgery, then later had total ED, and you are now recovering. Very normal, per Dr. Mulhall.

Hope this helps,

Gedman
Posted 8/3/2014 7:42 PM (GMT 0)

Tall Allen said...
PSA3DOT7,

You can ask for a copy of the surgeon's report. The problem is probably not whether the procedure was performed or not, or whether it was performed optimally. The problem is the term "nerve sparing." It seems to imply that everything should function as good as new if they were properly spared. Sadly, not so, and for several reasons:


  • Think of trying to extirpate a tree without breaking any roots - it can't be done.
  • Nerve sparing is also a relative term with RP - the surgeon may be forced to cut wider if he thinks there's some cancer nearby.
  • Even if the nerves are perfectly spared, they may stop working. It's delicate electronic equipment that doesn't like to be tampered with


A big part of the problem is that surgeons and/or patients inflate expectations. See:
Reasonable expectations for erectile recovery after surgery
- Allen

+1

I had both nerves spared, but lost the capability of erection without injectable drug assistance.
Even that is problematic, because I get painful erections with tri-mix, and bi-mix is less potent.
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