I've done a good bit of reading and am still not sure of best course of action for me. I had curvature at the top of my penis which was treated by Dr. Tapscott with Xiaflex. The last treatment resulted in a VERY BAD reaction that I believe resulted in narrowing at the base of my penis essentially causing a hinge type effect. Dr. Tapscott wants to treat that with another round of Xiaflex but I am positive I don't want to go that route since it has made my penis look and perform even worse.
I sought a second opinion from Dr. Lentz at Duke Medical. He suggested Plication for the curvature and graft for the narrowing. I obviously have zero experience with what to expect after the two procedures but I am told that essentially it won't "look" like it used to AND I am going to lose some length. I imagine I am like every other man out there and wasn't super excited to hear I was going to lose length and it still not look very good. Dr. Lentz said this was the best course of action since I can still get and maintain a natural erection. My thought is, what good is that natural erection if I am self conscious about it.
I read on here that everyone is happy with their decision to go with the implant once it's all said and done. I've read on different sites that they are able to add a little girth as well as a slight bit of length with implants these days. Is that a "sales tactic"? In my experience a man with an experience trumps any theories as to best course of action. Any help would be greatly appreciated.
Hi AcmeEric
Welcome to the forum. You have come to the right place for advice but we need help from you in order to help you.
How bad is your curvature? Which direction? You say you can get a good erection, is that natural or with PDE5's? How old are you? How long have you had Peyronies?
Do you have any plaque? Which ever route you go down it's really important you are pro active and not reactive. I assume you don't have a VED or traction device, these should be your top priority to minimalise any size loss and to increase blood flow.
Generally speaking, if you can get a good erection for intercourse most surgeons will not install an IPP unless your curve is severe - ie 70 degrees +.
You will lose size with a plication but a VED and traction should counteract any significant size lost. Grafting will preserve length but there is the possibility of weaker erections post surgery.
Thanks for your response!
I've dealt with Peyronies Disease for over two years now. I'm 46 and after the initial onset I was told by the doctor (not either I listed previously) to take a bunch of vitamin E and lets watch it for a year. Once I realized this was here to stay I sought out the specialist here in Charlotte.
My curvature is to the right at an angle of probably 50-60 degrees. The narrowing is close to the base which essentially makes my penis look like a Russian sickle.
I am able to get and maintain a natural erection but I don't because of how self conscious I am at this point. My wife says all of the loving things but that doesn't help my head.
Again, I greatly appreciate your help. This isn't a fun one but everyone here are extremely helpful!
Do you mind sharing what size you are currently?
This might sound like a strange question to ask but your size currently should have an impact on your next course of action.
That said, it is likely the Peyronies will not improve on its own without surgery. Taking 5g daily tadalafil before bed will help with nocturnal erections and allow extra blood flow into the penis during intercourse which might migate the hinge effect to some degree and a VED and traction will help keep the tissues healthy and preserve size.
Personally I would ONLY get an implant, given your age, if I couldn't get erections adequate for inter course or my curvature was so severe it made intercourse impossible. I fell into the second category and was implanted 11 days ago.
I was about 6" but now with the curvature and narrowing I am MAYBE 5". At this point I can't stand to lose any more length.
Hey Acme, I had an incision/grafting + plication procedure to correct significant Peyronie's curvature (approx 70 degrees) and hinging at the base. My initial surgery was a failure (the curvature came back due to the incision/grafting being done incorrectly) so my opinion is not unbiased, but now that I have an implant (as of last September) I wish I had started with that and especially with the highest quality surgeon I could find. I understand that Dr Lentz is highly regarded but if I were you I would be getting a 2nd opinion from Dr Eid (NYC) or in my case I used Dr Levine (Chicago). I would not proceed into surgery without at least 2 thorough reviews with good surgeons. From the amount of curvature and hinging you have I would think you are a good candidate for an implant and if you cannot tolerate any further length loss, you don't want plication as that will be the end result.
That's really good info. My thought process is, I would prefer to not chase this thing for a few years when, from what it looks like, most men in my situation ultimately end up getting an implant and then saying they wish they would've gone with the implant initially. Both doctors have stated that they wouldn't suggest an implant due to my ability to get and maintain a natural erection, but if I don't want to use it when it looks and acts the way it does it seems to me the implant would be preferred. That reasoning may be flawed and I'm not thinking about something which is why I appreciate all the advise and experiences more than you'll know.
I am sure your Dr has already told you (or will tell you) that there is a significant risk of ED with grafting procedures. My experience was that the discomfort and recovery time associated with both of my surgeries were about the same. That being said, I'd think about the pros and cons of both in detail before moving ahead. Having been through all of this, I dont necessarily agree with the premise that an implant should not be considered if one can still achieve a natural erection. In my case, I still could after the first surgery but intercourse was difficult and a second grafting would have almost been a guarantee of complete ED.
Hi AcmeEric
Welcome to the forum. You've done the correct thing in reaching out. As I've said before, this board has hundreds of guys who read and deliberate but never take the brave step to come out of the shadows and engage. Now you can start to receive honest, straight up advice from those who have the exact knowledge you are trying to acquire rather than feeling you are being mis-sold something for a profit.
I agree entirely with JustaGuy - being able to hold an erection is not in itself a reason for not seeking guidance on other solutions like an implant. I could achieve an erection but it was completely useless and unstable, and I have repeatedly said I would have jumped straight to an inflatable implant years before I had surgery had I the prior knowledge of them (I'd never heard of them before finding this forum) and if I'd known the outcome to be so successful. My failed excision and grafting surgery would never have been allowed to rob me of an inch of length - mixed with the damage caused from plaque build up.
So, yes, seek other opinions and take the advice of reputable surgeons.
Good luck.
I had a 40 degree bend due to plaque. I told the doctor to not do incision/grafting if the penis straightened out with just the implant. I authorized him to make the decision on the operating table. Which is what he did.
@JB999 - same doctor, same timeframe - went for incision/grafting + implant.
Your choices are:
1. Incision/grafting ONLY - requires substantial diligence to post operative care...including daily erections to ensure the healing happens the right way. Risks are very high.
2. Implant ONLY - works in many cases. Only Coloplast Titan is FDA authorized for this (correction of Peyronies' with Implant)
3. Incision/grafting+Implant - longer or more painful recovery.
I did not go with (1), because I realized that I had a high chance of failing in the post operative stages.
Again, I really appreciate everyone's help. I am definitely leaning heavily towards the implant. I just get the feeling that every other option laid out there is simply kicking the can down the road all while possibly losing length. I've read quite a few journals and it seems most have been able to regain their length once everything played out. Is that the case or am I reading into these posts with a bias towards my wishes?
I think I am now on to figuring out the proper doctor. I know Dr. Tapscott does these procedures but didn't see anyone here that has experience with her. I am about 3 hours from Dr. Lentz which I am not positive would be ideal riding in a truck that long from follow-ups. Dr. Eid would be the first choice but I am not sure how to pull of a NY surgery and follow-up. I'm kinda just throwing my thoughts out there right now. Any advice is welcomed and much appreciated.
I don't think your location to your preferred specialist should come into the equation.
I had mine done ( UK ) by someone who was 500 Miles away from me and Involved an 8 hour drive. I stayed there for a week and then was driven home - no issues. Follow ups will be done on zoom etc but he is still close enough for me to fly or drive to see him.
Don't choose someone just because it is easier for you.
Acme, i agree with Jimmi completely, I would strongly recommend you take the time to visit with at least 2 reputable specialists before you make a decision.
That makes sense Jimmi and JustAGuy. I am definitely going to speak with Dr. Eid. I reached out last week and they contacted me back Friday to set something up.