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Posted 8/12/2014 4:31 PM (GMT -5)
We spoke to three surgeons (and one RO) before making our decision to go with RP. What struck me is that there were three different approaches to using ED drugs:

--one surgeon would have prescribed Viagra pre- and post-surgery.

--one surgeon would have prescribed Cialis post-surgery only

--one would have prescribed Viagra post-surgery only


I thought I had read somewhere that DH should do a trial run of the three major ED drugs to see what he responds best to, but then I read that Cialis needs to build up in your body for it to work.

Any thoughts on this? Might be too late anyway given that we're a week away from surgery. (Could make for a fun few nights before surgery though!)

Finally, is there anything we should be doing now, pre-surgery, or that we need to get right now so we have it in time? Did anyone use a vacuum pump for ED rehab?

Thanks,
Melaine
Posted 8/12/2014 5:04 PM (GMT -5)
hmmm, my guy said try all three and see which one works best for you.

As for timing of when to start, I think it depends on how potent we are pre-surgery. I've heard of guys starting before surgery. When i asked my surgeon he said there was no need and that I'd be fine starting after surgery when I was ready to start my rehab process a month out of surgery.
Posted 8/12/2014 5:53 PM (GMT -5)
Melanie,

Cialis For Daily Use is a low-dosage, daily pill that has to build up in a man's system for a couple of days to work, but Cialis 20mg works almost right away and for about 36 hours. It would be a good idea to try all of the big three -- Viagra, Cialis, Levitra -- before surgery so you have some idea which ones give him headaches or make the world turn blue (a common visual side-effect of Viagra but I get it with Levitra sometimes, too.)

If you call all the doctors back you might be able to score enough samples but otherwise you can get scrips for a couple of each. If he does OK with Viagra there is a generic drug that is the same stuff only cheaper. It's called Revatio and there are inexpensive generics.

Not sure about your question about a VED. I use one for rehab -- four days a week. The other three I inject. Probably best to ask your DH's surgeon for his opinion but my surgeon says the injections keep the tissues oxygenated and the VED keeps me from shrinking.

If he is going to try all the pills before surgery it might be best to try the Cialis last since it wears off slowly. He shouldn't take anything the day after the Cialis (to avoid double-dosing since the Cialis hasn't worn off) and, all things being equal it would probably be good for him to be on Cialis during the operation. (Ask the surgeon about that last part.)

Oh, and be sure he shows up for surgery with those seminal vesicles nicely emptied. It's like returning a rental car when you've already paid for the gas. He won't get a refund if he turns in his prostate with the tank full.

As for what you should do now. Make sure he can see the television from his recliner. He'll be spending a lot of time there.
Posted 8/12/2014 6:27 PM (GMT -5)
He may want to start doing Kegels pre-surgery. I did them pre-surgery, and had no incontinence. From what I've read Kegels also help with ED.
Posted 8/12/2014 8:19 PM (GMT -5)
Thanks for the quick replies. DH has been doing kegels, so that's good.

I'm not sure I understand how to use the ED drugs. Does DH take a low dose every day to increase blood flow? And, if so, will he get headaches, etc., even at low doses?
Posted 8/12/2014 8:25 PM (GMT -5)
side effects aren't uniform and it's best you ask your doctor what to take and when.

In my case, I was told to either take 5mg daily or the 20mg Cialis every 39 hours. The purpose was to ensure blood flow and to counter possible atrophy.

I got headaches and muscle pains initially which kind of subsided as the drugs became regular. Then when I stopped the routine and only took them occasionally I'd have the side effects each time. Cialis side effects were just annoying, nothing more. Viagra was scary and I never tried another after the first attempt.
Posted 8/12/2014 10:12 PM (GMT -5)
Melanie,

When and what and how much how often vary from surgeon to surgeon. We can't really tell you except that there is a general consensus that phospho-diesterase 5 inhibitors do help prevent penile atrophy during rehabilitation.
Posted 8/12/2014 10:38 PM (GMT -5)
Melanie,

As is clear from the responses, the answer is a moving target.

My uro / surgeon (post surgery) gave me samples of all the "market leaders" with a schedule, and orders to report the results.

Viagra gave me "blue vision" in a scale I can't even describe, so that was out.
Levitra / Staxin did nothing.
20mg Cialis had some reaction, with incredible lower back pain.

I backed off to the daily 5mg Cialis, and continue it still (almost 5 years later).

Hope has not quite breathed it's last yet.

I also use a VED and trimix, neither of which would have been appropriate for me pre-surgery.
Posted 8/13/2014 1:21 AM (GMT -5)
Okay, now I get it. Thanks for your patience and for explaining it to me.

We will discuss this with the surgeon and come up with a game plan. Thanks again!
Posted 8/13/2014 8:42 AM (GMT -5)
Melaine,

I echo most of what has been said but add that I prefer Levitra. Cealis 20mg makes me feel like a mule kicked me in the back the day after I take it.

Viagra is ok but does not work good with food so is best on an empty stomach. Levitra is far less affected by food.

I would highly recommend a VED to be used GENTLY beginning a couple weeks after catheter removal. It should not be used with the constriction band at this point, just a gentle pump up, hold it for a few minutes, release and repeat about 3 times. Do that a few times per day.

Take half of a 50 mg prescription trazadone at night with a small snack. It is dirt cheap and will give better night time erections (NTE's) than an ED drug. NTE's are vital to penile health. They are believed to use different pathways for erection than day-time arousal erections so Tarzadone is not very effective for day-time erections

Take 1000mg L-Arginine 3 times a day (WITH MEALS). It is a common supplement available in any health food section. Body builders take doses 5 times higher. It relaxes blood vessels for a good pump during a workout. It also measurably helps penile blood flow and erection

Most importantly learn to play and explore since he can have an orgasm long before he regains erectile functioning.

Best of Luck to the both of you!

Post Edited (Tiercel) : 8/14/2014 9:14:43 PM (GMT-6)

Posted 8/13/2014 8:55 AM (GMT -5)
I used Cialis pre-op and daily post op for about 18 months. This was to increase flow but did not lead to an erection for the most part. At 18 months as I recovered I went to on-demand ED drugs and I found Levitra 20mg to be the best and that gives me 95%. I used the pump for rehab and also did injections at 12 weeks post op once or twice a week for at least nine months or so. I wanted to leave no stone left unturned in this quest - even if it cost me a few bucks. My results are good but took a long time. It is the minority that have normal erections within six months or so. Good luck.
Posted 8/13/2014 9:22 AM (GMT -5)
I wanted to add that I am not a fan of injections, especially TriMix since it can lead to Peyronies Disease and did in my case. Also, absolutely never use a VED within 12 hours of injection since it can cause an internal leak of a small (or large) quantity of blood. Whole blood leaked into tissue is a known cause of fibrosis.

The penis works because it expands and contracts. Scar tissue is like tape on a balloon. It prevents expansion and caused deformity so scar tissue is to be avoided at all cost.
Posted 8/13/2014 10:10 AM (GMT -5)
Melanie,

Population studies have shown a relationship between injections and Peyronie's but it is far from clear that it is causative. Tiercel used trimix and then developed Peyronie's disease. He is receptive to arguments that there is a causative relation. I, on the other hand, have injected just over 300 times in the last two years and remain straight as a toothpick. I tend towards the other side of the discussion.

Talk to your doctors. Read the research if you want. Make your own mind up. The jury is still out on that one. Candidly, I think the jury has fled and we will wait for a long time for an answer.

Tiercel,

Interesting about the trazadone. You're right about the importance of nocturnal erections. If I had any I'd spend a lot less time sticking needles in my privates.
Posted 8/13/2014 10:40 AM (GMT -5)
Tiercel,

I had not heard that you should not use a VED within 12 hours of injecting. My husband is currently on a program where he is supposed to use a VED every day, even on the two days a week when he injects with trimix. Is it 12 hours either before or after injecting? My husband has mild peyronies and the VED is partly for the purpose of treating the peyronies.

I will show my husband this post and have him ask the doctor's PA about this.
Posted 8/14/2014 9:32 PM (GMT -5)
Hi all,

I can finally post again! Kept getting an error message. Anyway, here was what I wanted to post yesterday:

I really appreciate all the info. As we get closer to the surgery date, I have this feeling that there is something I (we) absolutely need to do that isn't on our radar, which is not a great feeling. I don't want to learn down the road that we should have been doing X, and now it's too late. I'm sure that nothing is a permanent problem but you want to go into it thinking you've done all that you can.

So, regarding Cialis pre-op, and/or having it in DH's system during the operation, what is the reasoning behind this? And why hasn't DH's surgeon said anything about it?

Are Trimix and Bimix part of ED rehab, or do you use it like a one-time Viagra dose to have sex? I'm pretty sure that DH will be opposed to giving himself shots there, but you never know. I'm assuming that you can regain potency without these shots?

I like the advice regarding trazadone and, if it doesn't cause side effects, so much the better.

Thanks again!
Melaine
Posted 8/14/2014 9:37 PM (GMT -5)
trimix and bimix are the options if the pills don't work. Probably no need to look that far ahead right now.

Bluebird's husband is seeing the top guy in the country so she might know why some prescribe the pills before surgery and some don't. I assumed it was because of the age and sexual potency of the guy going into surgery.
Posted 8/14/2014 10:08 PM (GMT -5)
I also could not post yesterday.

My life was altered radically for the worse by Trimix. While I am far from the only one, that does not mean it will damage everyone but it is a gamble.

A key component to ANY injection in the penis is that you should squeeze the injection point for at least 3 minutes after injection to apply pressure at the site and prevent internal bleeding. Likewise, you should not put a vacuum on the penis after injection because it could draw blood out of the damaged tissue into surrounding tissue. The sooner after injection the higher the risk.

Too much vacuum pressure can even draw blood right through an undamaged capillary wall much like a "passion mark" - "Hickey" that youth often make on each other to show off.

Caution is the important issue.

I think it is critical for anyone with Peyronies to get exact baseline measurement of the penis to keep track of whether their routine is helping or damaging. Stretched, bone-pressed, flaccid length is critical. Curve measurement and girth are also important.

Keep in mind it is the nature of Peyronies that once triggered, the scar tissue often advances long after the area is healed. It is scar tissue running wild.

Tiercel

Post Edited (Tiercel) : 8/14/2014 9:12:15 PM (GMT-6)

Posted 8/14/2014 10:28 PM (GMT -5)
Melanie,

Everyone's results will be different just as incontinence results will vary. I had to have additional surgery 22 months after my DaVinci to stop the leaking while another patient who had his surgery by my surgeon 2 hours after me was dry in 6 weeks.

I know you are talking about ED, my point is your DH can follow his doctor's ED plan and it may or may not work for him. But the key is to have a plan, right?

My surgeon has performed over 7,000 RP's and his ED treatment plan was:

1) start taking Viagra 72 hours AFTER the catheter is removed. He had me take 50 mg on Monday, 50 Mg on Wednesday and 100 Mg on Friday.
His plan allowed me to get 100 Mg Viagra pills and break 1in half for Monday and Wednesday. Most insurance companies either don't pay for Viagra or the co-pay is very high. (That is another story) get you DH's doctor to start you out with free samples.

2) 4 weeks after the catheter was removed, I was to continue the pills but add the VED pump daily but on the Friday pill, I was to try to stimulate an erection.

To my surprise, the pump helped me get an erection right away.

Ask me if I am back to normal now and I would have to say no.

His plan was to try to get blood flowing ASAP to that area to begin waking up the nerves which can take time, a lot of time.

Trimix scares me. Not the shot itself but the possible side effects. I know Peter DA has had no problems with Peyronies Disease but several guys here at HW have had problems and they used Trimix.

I can obtain an erection using this treatment plan and have orgasms but not a hard enough erection for penetration.

Hey, it is the new normal, I was expecting nothing after my surgery but my wife and I can still enjoy sex.

I was unaware, like many of us here, that you can have an orgasm without a full erection. And, the climax is even more intense, at least for many of us, than before surgery.

Good luck to your DH and you with his surgery. Most of us have 3 things in mind before surgery:

1) Get the cancer out

2) Get dry

3) Have sex again

Notice the order! The main thing is to have an ED plan. You don't want to wait 6-12 months without doing anything. Like the old saying goes, "use it or loose it!"

Bill from Florida cool
Posted 8/17/2014 7:04 PM (GMT -5)
I want to 2nd the post by Big Mac on every single point he made!
Posted 8/17/2014 7:43 PM (GMT -5)
So should I even hope anymore for an erection?  If I think about sex I piss, if I rub it I piss more.  I am about ready to just live in the past.
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