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Posted 7/22/2013 2:42 PM (GMT 0)
OK, continence is improving in week 6 (DaVinci, removed prostate, seminals, 19 nodes, both nerves), and I have noticed that I have lost 2 inches in flaccid length. It is nearly inside my body. I thought that was just a post surgical anomaly, but what I have read here seems to say that it is only logical: if you remove a 2 inch long prostate, then take the urethra from below the prostate and re-attach it to the bladder, you have to get those 2 inches from somewhere. It pulls the external end (the penis) 2 inches closer to the body). Is that right?

Next, some guys are saying that they have been told by their doctor to take half a viagra, (or cialis, or levitra) to increase the blood supply to help grow it back out, but one guy said it is simply to keep it alive. Keep it alive? It's going to die? Is that right?

Third, some guys were told to use the suction devices to have sex again, and to practice with it before, but not now. At six weeks, I might rip something off. They are saying 6 months and then start pumping.
I'm making it through the night with a seemingly dry diaper, so things are improving, but my doctor told me nothing about viagra, and nothing about pumping. He doesn't want to see me again until September 13 (surgery on June 5).

Any thoughts on any of this?
Posted 7/22/2013 2:49 PM (GMT 0)
Your prostate was one of two "mounting" points for your bladder. Now you only have one, and the angle of the bladder is usually different after surgery. So the weight of the bladder, but the re-connection of your urethra to your bladder neck, is definitely making you wee one pull inward. Very normal, some surgeons are better than others, about informing their patients about that ahead of time.

So most men report much small ones in the flaccid state.

As far as post surgery sex therapy, again, depends on your doctor. My doctor was of the school that you don't address the subject until you were 90 days out. Others here, have been told to start with ED drugs immediately.

I don't think I would advise anyone using a pump device, without their doctor's giving them clearance to do so. You still underwent a serious and major operations, with a lot of complex stitching and suturing internally.

Sounds like you are doing well so far.

david
Posted 7/22/2013 3:00 PM (GMT 0)
Thanks, I hope some other people chime in too.

But man, Purgatory, in your signature you sure seem to have gone through the wringer! I admire you sticking with the program and fighting the good fight! This has been so "un-fun" that I can't imagine finding out it didn't work. Thanks for being on here to help other people.
Posted 7/22/2013 3:05 PM (GMT 0)
To MHMeyers ...

   about the first paragraph, what I just read by "Purgatory" makes sense. I had nothing to add to that, but then my Prostate was not removed. It was treated nearly 10-years ago with radiation and brachytherapy. I can understand your concern and would (myself) want a medical explanation from a doctor.

   about the second paragraph, I cannot imagine any of the ED meds would be a satisfactory means of "getting back to normal" - if you see it that way!For the past 13-months, I find it most comfortable peeing while sitting down ... and while it is prostate cancer related, it is due to one kidney routing the urine thru a nefrostomy tube - out my back - down my leg - and then into a vinyl bag that I empty 6 to 8 times a day. The other kidney is tied to my bladder by way of an internal stent, so "Uncle willy" is darn near useless these days. Just a little humor ... sometimes needed!!!!

   And about the third paragraph, I did a couple of years ago try an approved pump because of weak erections. I could not get used to the idea of that substantial rubber ring going on tight - if you know what I mean! I was in a long-term relationship at the time. That has since vanished - and the Lupron has helped (not the right word really) me to forget about the reason for the pump.

   While, it's good to get opinions ... please talk to a doctor before making any major decisions about any of the above.

Best wishes to you .... and a near zero PSA!!!!!

Posted 7/22/2013 3:08 PM (GMT 0)
I believe this is a known, not often discussed, side effect of surgery.
Posted 7/22/2013 3:24 PM (GMT 0)
MHM,

It is typical to lose an inch or so for the first couple of months but most of that will gradually come back. Your urethra will stretch a bit but most of the gap (where you prostate used to be) is made up by your bladder gradually repositioning downwards to fill the space.

When penile rehab starts depends on the surgeon. Three months is fairly typical for pumps and/or injections but there are very well respected doctors who say it should start much earlier (at about where you are, actually). It's certainly something to ask your doctor about. Make sure he knows you want to start as soon as he thinks it is appropriate. There are atrophic changes that can happen if you wait too long that can be hard to reverse.

You can ask about PDE5i drugs (Viagra and competitors) which some doctors like to start pretty soon after surgery on the theory that it improves blood flow. With your nerves gone it is not likely that pills will be much help with sex (although it has been known to happen). If you doctor does want you to use the pills you may need to get him to fax a note to your insurance company stating that you need the drugs for rehabilitation after surgery (insurance companies don't like to pay for boner drugs.) Ask you insurance company if pre-authorization is needed.

It's possible that your doctor will want to skip the pills altogether and go straight to a vacuum device and, probably, injections too. Some doctors (as I said) say you can start pumping and injecting at six weeks. Others like to wait three months. That'll be up to your doctor. Just tell him you are ready when he is.
Posted 7/22/2013 4:01 PM (GMT 0)
You may want to look at, "Saving your Sex Life, A Guide for Men With Prostate Cancer", by Dr. John Mulhall. Dr. Mulhall is an expert in Penile Rehab and I found his book very helpful in addressing the subject. You can also google his name and subject matter and find several excellent videos on the subject.
Posted 7/22/2013 4:27 PM (GMT 0)
Yes, there is a loss of flacid length and most of us look like we went swimming in cold water. The effect, I believe (in my case) was due to "trauma", although there is much debate about whether it is due to the shortening the urethra or positioning of where the prostate used to be. The good thing is that (again, as in my case) as things "calmed down", the flacid length has comes back. And you are correct, very few doctors explain that to us.

Bill K.
Posted 7/22/2013 4:28 PM (GMT 0)
Here is a nice lecture by Dr Mulhall from a number of years ago.

youtu.be/OQlGVT7HiF8 part 1 18:33
youtu.be/o7GmTZITJ5s part 2 15:20
youtu.be/ie8NkOu2VNA part 3 31:20
Posted 7/22/2013 4:35 PM (GMT 0)
MHM,

Some of the loss is mechanical, but there will be permanent loss of penis cells from tissue atrophy unless nerve innervation and blood-flow are re-established quickly. I agree with Peter that now is not too soon because atrophy and fibrosis set in quickly and may be irreversible once established. The worst case is when "venous leak" sets in and the penis can no longer hold its engorged blood supply for any length of time.

I'm always frustrated when doctors don't disclose common side effects like this.

- Allen
Posted 7/22/2013 4:51 PM (GMT 0)
MHMeyers,
All I can tell you is what my surgeon recommends for ED rehab for his patients. He has performed more Da Vinci surgeries than any one in the world, over 6,000.

I was put on Viagra 100mg 3 days after the cath was removed. I broke one 100mg pill in half which made it 50mg now. I took 1/2 on Mondays, the other 1/2 on Wednesdays and one full 100mg pill of Fridays as a "Boost pill" and told to attempt stimulation after taking the pill. At 4 weeks after the cath was removed, I was to use a vacuum pump once a day, every day. All of this was mainly to get blood flowing and to help wake up the nerves.

Your doctor should have had some kind of ED therapy plan for you. If he doesn't, he hasn't completed his job.

Bill from Florida
Posted 7/22/2013 5:01 PM (GMT 0)
Big Mac, Thanks. My doc sent me home peeing in my diapers and said the incontinence would get better and he wanted to see me in 3 months (Sept. 13). That was all he said. I knew he had removed both nerves. There was no mention of pills, or vacuum devices, much less when I should do either one. Maybe losing both nerves means the pills are a waste of time. But I already had a vacuum Osbon device (I had venous leakage before) and he didn't mention when or if I should ever use it. I'd try it now if I wasn't afraid I might rip something loose. It would be nice to see the head of the weenie again...The turtle is still in his shell.
Posted 7/22/2013 5:15 PM (GMT 0)
With both nerves taken, it will be extremely difficult to ever achieve a natural erection.You will need help from injections or the pump. To my knowledge pd5 inhibitors, may help with blood flow, not sure about erections , as they work with damaged nerves as they heal. With no nerves, its bleak from that angle. This view is held by Walsh and others. The injection process will work however as they bypass the nerves and do the job of the nerves,,. I am by no means an expert in this field. Mainly smatterings of reading and anecdotal information. So if some one here could add or take away,knowledgeably, from what I have just posted, please do so. There is also penile implants , again, my info is ltd in this area, but there are members, no pun intended, that have them. Ok thats the dicey news on that front. Now on the cancer front, I would say with a lots,lots confidence,you will probably never have to fear Pca again. Your gleason was downgraded to one o the least aggressive variants out there. The surgical team did a very thorough job, very thorough, imo. Your surgeon pulled no stops in an attempt to cure you. My edumacated guess is the he/she did. Both the positions I have taken here, on ED and cure, are particularly mine and am not an expert in either field, but I do see dots and can connect them pretty good. Good Luck. PS Ask your surgeon about lymphocels, they could be a side effect, that will show up in a few weeks, based on 19 nodes removed . They are very treatable in the vast majority of cases. Also was your jackson pratt drain in for more than a week? I had 2 golf ball sized lymphocels that showed up 2mos postop, that self resolved in 3 weeks, accompanied by a low grade fever and slight malaise for that period of time also. Pratt drain was in for 5 weeks, more a nuisance, as the tube kept coming apart, spilling lymph fluid on me during my walks, ech!
Posted 7/22/2013 5:33 PM (GMT 0)
Tall One,

My reading of his information is that both nerves were taken in his surgery. Wouldn't that mean that nerve innervation will be problematic and he will probably need to talk to his doctor about injections? VEDs help some with the mechanical issues but generally do a so-so job of oxygenation.

MHM,

Let us know what your doctor says. If he writes you a scrip for a vacuum erection device come back here and start a new thread so guys can describe the brand and model they use, what they like about it and what they hate. And if he writes you a scrip for injections come back and we will try to convince you that sticking needles in your willie can be fun.

(EDIT) I was interrupted before I submitted and the thread had moved on... I see you already have a VED. You should talk to you doctor about when you can start using it and about injections.
Posted 7/22/2013 5:42 PM (GMT 0)
MHMEYERS-

I have heard of guy's on this forum that also were told that both nerve bundles were no spared but yet, after some time....things started happening again...and one of them just reported that he is back to normal.... :-)

I would certainly do everything I could, just in case......!!!! You still need ED Rehab whether it is pills or trimix...whatever works.

The idea of the trimix is to get the blood flowing so the tissues stays healthy.....

You need to push your Dr on this subject...don't take no for an answer and I would certainly not wait 3 months before you have a plan in place.

Sometimes....the guy's on this forum know more about the reality of all this than the Dr's....they deal with the surgery, but we have to deal with everything after that !!!

Get educated...watch out for yourself, and heed the words of those that have already been there, done that...

Just my thoughts....

Good luck to you and keep us informed on what is going on with you :-)

Cheers,

Curt

Posted 7/22/2013 5:47 PM (GMT 0)
PeterDA,

You're quite right - I didn't read his profile where it says both nerves were sacrificed. I think the average potency preservation is only 13% when nerves are not spared. Sadly, probably only injections or a prosthesis can help create erections at this point. If he can stand the constriction ring, VEDs can do it mechanically. Even without the restriction ring, it might prevent permanent size loss. Penile traction, though tedious, might prevent permanent size loss too. They both have been used to fix Peyronie's, which can result from the injections.

Shows the importance of a second biopsy opinion and of getting full information before a decision.
Posted 7/22/2013 6:16 PM (GMT 0)
Regarding it getting shorter. I knew that was going to happen, but the reality is, once the surgery is over and you see the results, THAT'S when the shock and aww hits, let alone the ED issue.

I chose surgery (because every freaking doctor I went to, said "have surgery") and no matter how hard I convince myself that was the right choice, I would do it differently today if I could.
Doctors only mentioned possible ED and possible incontinence.

Three strikes and you're out rule.
Shortening.
Impotence.
Likelihood of recurrence.

<--- Looking for his meds again...
*sigh
Posted 7/22/2013 7:12 PM (GMT 0)
James,

The bad news is none of us gets to go back. There are no do-overs with prostate surgery.

The good news is there are ways for us all to go forward.

In your case, with both nerves spared and being a young guy, it's pills and pumps and patience (and maybe injections while you wait for the nerves to come back online). Your prognosis is probably pretty good. For me, with some pre-op ED, only one nerve spared, radiation on top of surgery, and two years of ADT on top of that, my odds of a natural are not so good so it's injections and pumping and possibly an implant someday, depending. MHM is probably in about the same boat.

None of us are done yet.
Posted 7/22/2013 7:17 PM (GMT 0)
I didn't have radical surgery but it seems to me only a minority of men who have had doctors ever telling them about "shrinkage". Many here are totally surprised. Although one thought it was an anti surgery guys conspiracy of lies.
Posted 7/22/2013 7:33 PM (GMT 0)
I was using the Osbon pump before the surgery because pills didn't work any more, and Caverject didn't either, and I couldn't find anybody to compound the Trimix for me. So the pump worked well, right up to the point of ejaculation. Then it hurt when the fluid "bounced off" the ring and went backward. Now, with no fluid, it should be fine. I just need the doc to tell me when I can try it without messing up the surgery.

Logo, I only had the drain in for one day. And I have been periodically nauseated, weak, and had a fever of 99.3 or so come and go. I called the doctor's office and the nurse or PA said "don't worry about anything below 100.5 degrees". So it sounds like I could have had a lymphocele or two. Thanks for the tip.
Posted 7/22/2013 7:41 PM (GMT 0)
Any news on the prostate transplant front?
Posted 7/22/2013 10:09 PM (GMT 0)
Ispark , do not give up on the ED front or its over. You should be pumping, and taking the pills. I swear at 2 years, I went fro a 2 week trip to new york and when I retuned I took a levitra and it turned on like a water faucet. For some reason I went to cialis/ viagra and it works. I just don't like ordering the pills . silly, I know. But at my age I do need the help.

MHM, if you had ED prior to surgery, as you indicated, Im thinking , game over, and would look into penile implants. Heck We,re all gonna be bionic in a hundred years or so.
Posted 7/22/2013 11:00 PM (GMT 0)
Perhaps I'm just lucky or my surgeon has a different technique, but I didn't lose any size due to the surgery.

-Gedman
Posted 7/22/2013 11:15 PM (GMT 0)
Gedman,

Your surgeon definitely does have a different technique. Dr Tewari avoids torsion of the nerves and blood vessels during surgery, maintaining blood supply - he monitors penile tissue oxygenation- and nerve innervation of the penis throughout the surgery. Imagine if someone had brain or heart surgery and the blood supply were cut off for as long as a DaVinci surgery -- the patient would be dead. It's no wonder that there is usually massive penile tissue destruction during the surgery. Unfortunately, I don't think anyone other than his team practices that yet.

- Allen
Posted 7/23/2013 2:14 AM (GMT 0)
I also had no penile shrinkage.
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