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Posted 3/20/2013 9:44 PM (GMT 0)
Hello,

I'm looking for info from any of you that have gone through robotic surgery that started with ED post surgery and have "come back to life". NOTE: I had a complete veil nerve sparing procedure but still am aware there's no guarantees out there.

I'm on a rehab program and am told that this could take up to a year or 2 for the nerves to "wake up".

Have any of you gone from ED to functional again? What's been your experience from a timeline perspective?

I know there's no "norm" for this but looking to see if there's any hope out there.

FYI, no incontinence here. 5 weeks out and only 1 pad per day and that's for minor leakage. Pad is not noticeably wet at the end of the day so I'm optimistic.

Thanks.
Posted 3/20/2013 10:54 PM (GMT 0)
Hello: I hope no to upset anyone with the graphic nature of my comments, but this is what I was looking for after my surgery.  

For me, at age 58 and no prior ED problems, it was a longer road than I expected or my Dr. explained.  I had immediate urinary control so I was feeling confident that ED wouldn't be an issue.  In my case: total ED until Bimix injections started at 6 months post surgery.  I did use 5 mg. of overseas Cialis from the start and also used a VED everyday.  From 6 months to about 13 months, I was only able to have intercouse with Bimix injections. No natural erections except those while sleeping (they disappear once you wake up). From 13 to about 19 months, was able to make love with decreasing amounts of Cialis.  Now at 20 months, I can make love with no problem and no aides, but I just take a small (5 mg.) bite of Cialis to make things even better.  This was a long road for me and I was quite depressed, which may have made this a catch 22.  In my case: Orgasms are the same as before, size is the same, no urine lea

Posted 3/20/2013 11:13 PM (GMT 0)
Thanks for the honest response. I never ask a question I don't want to hear the answer to.

I suppose the good news is that the doctor and rehab nurse both explained that your cycle is what to hope for so that's not a surprise.
Posted 3/20/2013 11:16 PM (GMT 0)
Sorry- my reply was cut short for some reason, so let me continue:

Now, no urine leakage. Erections stronger while standing or kneeling, less on my back. No visual type erections yet, but things are starting to tingle when I see pretty girls. Bottom line: don't give up; don't get depressed.

Bill K. fro NJ
Posted 3/20/2013 11:23 PM (GMT 0)
Bill K, thanks again. I'm not giving up yet. It's very early and I'm trying to keep my head in the game. Will be happy when the leaking is at zero. I'm doing really well controlling that so far.

Injections are taking a bit to get used to. Still not at the point where I can just do it without thinking about it but I've only done 3 so far. Haven't found the optimal dose yet. Still upping slowly per instructions from caregiver.
Posted 3/20/2013 11:24 PM (GMT 0)
I was fortunate in that a month out with the help of ED pills I was functioning fully and well on my way to rehabing. But of more interest to you is what happened over the next two years, with every passing month, I needed the pills less and less. I haven't marked the milestones, but I'd say that that I was fully functional without any pills a long time ago. I have a draw full of the pills now and can't even remember when the last time I took them. And my previous batch expired so I threw a lot of them out.

I definitely noticed a significant steady improvement over the course of the two years.

I was diligent about taking the pills a month out of surgery for blood flow purposes and really practiced on a daily basis alone and with my wife as this is what my nurse said to do for rehab purposes.

Good luck.
Posted 3/20/2013 11:28 PM (GMT 0)
davidg, what kind of pills were you taking a month out and what dosage that showed you results? Also, what type of surgery?
Posted 3/20/2013 11:37 PM (GMT 0)
cialis. 30 days out. Had robotic. Viagra and Levitra also worked but gave me funkier side effects so I gave them all to a friend who's wife has posted here. The second Viagra turned my eyesight to neon night time vision I decided to stay on cialis alone. At first Cialis gave me muscle aches like growing pains and some headaches. that went away as son as I started taking it regularly. When I would stop using it and only use it recreationally the side effects came back. I did the 36 hour course, think it was 20 mg. Got them from India (literally, not by mail).
Posted 3/20/2013 11:45 PM (GMT 0)
They put me on a daily dose of 5mg cialis for blood flow starting a week after surgery. I did get headaches at first but no muscle aches. Also no results either from such a low dose. How frequent were you taking the 20mg version? I was told that the doctor didn't endorse the brands from outside the U.S. as he wasn't certain what its makeup exactly was. The U.S. made is very expensive however and insurance will only cover 4 pills a month so I'll be paying out of pocket but worth it if it works.
Posted 3/20/2013 11:48 PM (GMT 0)
at first I was taking them every 36-48 hours. As time went on after a few months I would take them maybe twice a week as a) I was improving without the meds and b) seemed to me th eeffect slasted longer than 36 hours.

The ones I buy in India are exactly the same as the ones sold in Europe and Canada.

Buying them mailorder form a less than reputable source might be an issue. I purchased them directly in the drug store. Less than $1 per pill as I recall.

5mg did work for me initially (that's what I went with) but was getting annoyed with splitting them so i moved to the 36 hour course.
Posted 3/21/2013 12:09 AM (GMT 0)
Bill, I am having my surgery there on April 8th, thanks for posting your experience. Sounds like things are going well so far for you. My insurance wont cover the cialis so I will have to pay out of pocket too. Injections werent discussed yet, when will that happen ? I hope my insurance covers that at least.

Don
Posted 3/21/2013 12:23 AM (GMT 0)
Injections started at 3 weeks out but I stopped for a week because I had a minor setback and didn't want to chance it. I've paid out of pocket for the injections and haven't even checked with my insurance company on that yet. Cost was $190 for a 3 to 6 month supply. Insurance company basically sucks and is there to throw roadblocks up which pisses me off since these are doctor prescribed for rehab and not just "for fun".

I'm appealing the insurance company's ruling but will pay out of pocket if I have to as it's important to me to follow the recommended rehab.

Every doctor is different in when they recommend starting rehab.

Best wishes on your surgery Don.
Posted 3/21/2013 12:38 AM (GMT 0)
Hi Bill,

Did your doctor prescribe a vacuum pump to use? You may have mentioned this already & I might have missed it. But it is something that I used for a while to help the sexual healing process. I didn't really like using it, though, so I stopped. darn thing cost me $600 also. LOL

The general rule of thumb is that it can take anywhere from a couple months to 3 years for sexual function to recover. Another general rule is that the post-op erections will NOT quite match the level of pre-op erections. So whatever an individual's personal performance level was before surgery is the baseline that will not quite be reached after surgery.

In most cases, that is probably still plenty good enough for performance.

We recently had someone report (either here on Healing Well or on cancerforums.net) that he had given up on future erections even after nerve sparing surgery. Well, he posted that one recent morning he woke up with a hard erection -- first one in years. He wrote it off as just a fluke.

Then, later that same day, another hard erection formed & suddenly he was "back." His nerves FINALLY recovered & awakened after 3 years, 9 months.

Amazing, isn't it? After almost FOUR years! So it can take different times for different patients.

In my case, I'm 16 months out and have been getting semi-hard erections for the past couple months. My girlfriend keeps saying that she can tell that my recovery is going to be very soon & very good. I hope so because I had bad ED problems for the immediate years prior to my surgery because of very significant BPH. I'm also feeling a bit of "stirring" down there when seeing a sexy woman in a store, etc.

So, even beyond 2 years out, you should have a lot to look forward to. It's difficult to be patient, but there's not much that any of us can do. When it's ready to wake up, it will.

Hopefully both of us will have some good reports to make to the forum in the not too distant future.

Good luck!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.
Posted 3/21/2013 12:47 AM (GMT 0)
Thanks Chuck, appreciate the info. Very encouraging even though it's a long term commitment.

I talked with someone that had theirs done 3 years ago and he's given up. He also had significant nerves removed from what I understand so I'm trying to look on the bright side that all my nerves were spared.

Trying to remain optimistic and focus first on getting the leaking problem completely solved. Working both in parallel but have expectations set for long term on ED.
Posted 3/21/2013 6:36 AM (GMT 0)
Chuck, how long did it take for you to start to have any reaction without injections or pills?

My doctor did prescribe a VED and I don't like it. I find it difficult to believe that people could use that as solution good enough for sex.

I think one of the most disturbing things for me is that I had no ED problems whatsoever going into this. It didn't take much for me to get things moving from just a visual or a thought. Now the disconnect from that and a physical reaction is very unsettling. It's one of the dirty little secrets they don't tell you about prior to surgery.

Post Edited (BillD) : 3/21/2013 12:41:51 AM (GMT-6)

Posted 3/21/2013 7:24 AM (GMT 0)
Actually, I've never had any injection for ED. I have taken Cialis a couple of times with no result -- but that was probably 7-8 months ago. Haven't taken them very much because they are so expensive.

However, my girlfriend is planning on coming over in a couple days & I'm gonna pop 4 of them (5 mg each) about an hour before we try any "extracurricular" activity. We're both anxious to see if it might bring it around the rest of the way since I'm now having semi-erections.

Yeah, I never did enjoy using that VED even right after surgery to get the blood flow going again. And even beyond just "exercising," I never liked using those very tight rubber bands to try & maintain the erection. It always seemed to hurt when one snapped onto the base of the penis -- and I always wondered what would happen if the little handles ever broke when trying to remove it. LOL

I did ask my surgeon about erections after the surgery. He bluntly told me that they would NOT be as efficient as however they were before the operation -- and I was having severe ED problems because of my BPH. However, even at that, I still feel the stirring feeling returning (first time in years) and the erections getting closer to being firm.

So that should give you a lot of hope for the future. Everyone is different, of course. But, if I am feeling some hints that a comeback (no pun intended) is in the future, you should also expect to be very pleased at some point down the road.

Hopefully, not too much farther down that road.
Chuck
Posted 3/21/2013 8:10 AM (GMT 0)
I hope you're right Chuck. I didn't realize this is what I was signing up for. They explained percentages of men that have ED post surgery but they don't tell you that means AFTER a long recovery. They never quite tell you that, without almost 100% certainty, things won't work after your initial healing. I sort of thought it meant that once everything healed that life would return.

Learning that this is not so. I had very firm erections (can't even believe I'm having this discussion online with someone I don't know or anyone for that matter) up to the day before surgery. Look at a hot girl, close to my wife, thinking about it and it was up and saluting and ready to go. Trying not to let this get me depressed but it's not easy. I have to put faith into the fact that they did the nerve sparing procedure correctly and that "things will eventually wake up". I'm not a religious person so there's no blind faith (though I do like the group) and being a scientist the whole "wait and see if it works" uncertainty is unsettling.

Second guessing this doesn't do me any good. However, if I knew then what I know now I don't think I'd have gone for surgery. I may feel different if things begin to recover but this is not what I signed up for.

Hoping you're right and trying to stay optimistic. My younger brother (50 at the time of surgery and symptom free prior) is 4 months out and he's got nothing and seems to be losing hope.
Posted 3/21/2013 12:55 PM (GMT 0)
BillD,

A couple of things to bear in mind:

We here on this forum are not necessarily a representative sample of men who have had our particular treatments. The guys who recover full potency after a month or two tend to have other things to do in the middle of the night than to check in with HealingWell and those who struggle are disproportionately represented here. The fact that the experiences of the guys here don't always line up with the statistics you were quoted can often be explained as bias due to self-selection of participants in your online survey here. Most guys who are potent before surgery are good enough after four to six months.

I am a big fan of penile rehab -- the pills, the pumps, the injections, whatever it takes to make it happen. There is some debate among researchers as to how necessary it all is -- some doctors make the claim that men recover when, and if, the nerves heal and that in the end the rehab doesn't make that much difference. Maybe. But it gives a guy something to do while he waits. It is empowering. The nerves are relaying signals from the brain (... ok, the brain and the spinal cord...) and if the brain is depressed then there just aren't going to be many messages for those nerves to send. Part of what delays the recovery after surgery is that the temporary impotence does a number on a man's head and by the time the nerves start to heal there is that problem to deal with, too. A vacuum erection device is an uncomfortable machine you use to pump up your confidence. Trimix also works on the head by working on the other end.

One commenter mentioned that he finds the rings uncomfortable with his VED. I use a Vacurect device that uses a different kind of ring that many men find more comfortable.
Posted 3/21/2013 1:35 PM (GMT 0)
Thanks much guys. Can't tell you how much I appreciate it.

I was doing fine regarding having patience till yesterday after talking with a friend about his experience and then the mind decided to start playing the "what if" game. It woke me up last night as you can tell from the time on my post.

One of the reasons I said "no" to a support group is that I'm trying to remain positive and optimistic. The last thing I want to do is be around people worse off than I am or even like me and have that work on my mind. Worse, I didn't want to bring the group down as a result.

This forum has been great and it's more than once talked me "off the ledge" so to speak. Today is 5 weeks post surgery and I'm grateful I feel as good as I do.

Back to finding some patience and doing my rehab and going about life.
Posted 3/21/2013 2:15 PM (GMT 0)

Bill,

Like you I was on low dose Cialis right after surgery for blood flow and healing purposes.  At about three months I started getting a minimal response--not an erection per say, but more of what I would call a "chubby".  At that point my wife and I started to try actual penetration with the thought of what our doctor told us--practice makes perfect.  Remember gravity is your friend in these early months and not to be too graphic, but if I put a "death grip" around my manhood I was able to achieve penetration and maintain the erection for a few minutes.  At the 6th month mark after about three months of doing this I started to achieve erections on my own with the help of Cialis and I no longer needed to grip myself to maintain the erection.  I now have fully functional sexual capabilities and use Cialis only as needed.  Bottom line is if you had no issues before surgery you have every reason to be hopeful.  It is tough to not get frustrated at times, but it is not being flip when I say with all honesty--Use it or lose it!!  Keep trying and things will get better.  Good luck and best wishes.

Posted 3/21/2013 6:16 PM (GMT 0)
BillD -

your story seems like mine.  You did not post stats but I assume you are young and had early stage PCa.  We are all thrilled initially that we survived the surgery and our path is OK.  Once we dry up the ED becomes the real battle. Like you I was not prepared for the long haul. I didnt believe that I would "not work" - I thought I would "wake up " in weeks.  I took Cialis and pumped daily initially.    My wife and I "worked out" prior to surgery to ompimize the outcome.

To move forward I am 11 months out and am getting partial erections. This has encouraged me and I now see light at the end of the tunnel.  However, I drove myself crazy waiting form my penis to respond.  It has been on my mind 24-7.  This led to depression and anxiety. It hurt my marriage as my wife thought I was too preoccupied with ED. I use daily Cialis and shots for rehab.  Attempting sex for me has been embarrassing and makes me angry and depressed - I have not had sex in almost a year.

     My advice would be to stick to rehab and be realistic in the time frame.  Don't focus day to day if possible.  The surgeons are not forthcoming - Dr. Mulhall from Sloan talks about 18-24 months in many patients. Watching my penis day to day was unproductive. Even now - my progress is slow.  I had nothing for eight months.  For what its worth I too feel in retrospect I would not do surgery again.  Of course - if I am OK in 6 months then I may change my mind.

Posted 3/21/2013 6:48 PM (GMT 0)
HCV, yes, very similar to you. I turned 53 last week, 4 weeks after surgery. I was on active surveillance initially when initial biopsy showed 1 of 12 cores positive and that only 5% so they were not concerned. I had the MRI with the probe (absolutely the most unpleasant of all tests and even more unpleasant than the surgery) and they were still feeling that they didn't have a complete picture. My PSA when I was first sent for the biopsy was 4.49 in January of 12. In April of 12 my PSA was 1.80. I was thinking I was in the clear.

They wanted me to have a follow-up biopsy with a guy in Boston that is supposed to be the best at this. My initial reaction was "really, there's someone better at shooting needles from a staple like gun where I don't want them than another person?" Well, I went to the other doctor and he did 20 samples in a more precise grid pattern. His results were 10 of 20 cores positive. 5 on each side but non more than 20% and most around 5%. Still, they felt that since there was minor PNI and 10 of the 20 were positive that it was time. They didn't recommend radiation for me due to my age and the complications down the road if they have to do surgery. It scared me enough that I chose surgery. Even the two top radiation guys were telling me to go for surgery.

The prostate came out and it was small. They were not able to save the apex which they were prepared to do but they realized that the tumor was there so they took the apex. They performed a full nerve sparing procedure called "the veil of Aphrodite" and the prognosis from the doctor was extremely positive.

Being 5 weeks out and having all this positive info I was feeling that there'd be some movement on its own but I'm learning that those people are in the minority so I'm learning to settle down and be patient. I'm not depressed yet. I'm a bit pissed off but that's normal I suppose and more due to the fact I was not prepared for this part. As much as they tell you the statistics about the percentage that will have ED they neglect to tell you that you WILL MOST LIKELY have ED for some period of time and have to hope you get it back.

I look at it like someone dumped me in the rain forest and said "OK, go find your way out and home. Hopefully you have enough supplies to make it out but we can't tell you how long it'll take".
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