Peyronies Society Forums

This is my journey through my eyes and emotions.

My main dx is that I am a hemophiliac, with the background fear of any bleeding from any work or procedures done on me. My secondary dx is PE and Peyronies disease.

The main part of my lifetime worries- Part 2
I have been suffering from Erectile Dysfunction, the Premature Ejaculation (PE) part, since a teenager. It got progressively worse over the years. Trying the different meds, condoms, sleeves, SSRI meds, beta-blocker meds, sex therapists, and psychologists. Nothing changed. Every time I got a new thing, I would get my hopes up, to be knocked back down again.  Finally, I just accepted it. Every 5 yrs or so, I would repeat most things above, but nothing changed. I got married to a wonderful woman who is supporting me through all of this.  I am blessed and thankful for her. I've been married for 17rs, and after our first 2 years, my issue with PE started getting worse -by that, I mean, going from 3-4 mins to less than a min to sometimes before penetration. We are working through this together.

Part 3. Now at 17 yrs of marriage, this bend in my penis started in June 2020 and just kept getting worse. By Aug, I started blaming my wife for us not being able to have sex comfortably without the bend getting in the way. This was my fault, not hers. Which I have apologized for!. It came to Christmas and New Years', and the bend got so bad we can't find a position to get in for sex. Not the Christmas present or the start of a new year that my wife or I wanted.

Next, we placed a call to our primary care doc and had to wait 3 weeks to see them.  Then another to see urology to dx Peyronie's. While waiting on an apt for urology, my wife and I look up treatment, and all I saw was shots and bleeding and not to do it with a bleeding disorder. And, it could come back, and I was like, WTF!!!! And after finding this site, my wife and I studied, and we saw the option of an implant!

Next, we went in to see urology. It was an ok apt. He wanted to try injections. I was like, no. He wanted me to try all the other things again to fix PE. I was persistent for a referral for an implant because he had never done one, much less just started injections testing. Then his comment just before he said he would try to find a reconstruction guy. He said his recommendation was to live with what I have and use it the best I could before any surgery. But he didn't say that about injections. As of April 9th, I still have a massive bend and PE, and I am waiting for the doctor to call me with a referral.

Til later, Waveboy out

I wish you the best on this journey! I have also had 2 double hernia operations left and right  with complete fiberglass mesh in my abdomen.  It also sounds like you have a great relationship with your wife - this is also very helpful.  I do know that Hawk would be the one for questions on an implant . I also believe that Dr Eid in New York is the one Dr that comes highly recommended as far as implant surgeons go. So please keep us updated on this  :)   Mike

Hang in there bud.  What insurance do you have?  You may not need a referral.  I too have suffered with PE.  It's not fun.  I will say an implant helps in that if you finish too soon it doesn't affect your erection.  You are still hard as a rock, for as long as you or your wife want.  Feel free to PM me or ask questions here in your thread.  We are here to help

Thanks Tdix. My insurance is a PPO but the referral is from my urologist to a specialist in reconstructive urology with access to a competent hemotologist. This is what makes my situation so complex. I will likely have to be in the hospital for about a week+ just to get my clotting factors stable. The most dangerous part of surgery will be the 8-10 day range, after surgery, when clots start breaking lose and I could possibly begin to bleed again.

So I waited 2 weeks, after driving 6 hours round trip, to make a comment due to how my apt went with the reconstruction urologist/ surgeon. I went in with a referral stating patient wanted different options  and discuss implant. So resident doc comes in and ask me my history and once I told him n showed him pics of penis with start of bend  cause it was semi hard and he measured flacid penis. The resident told me that I had bent my penis tryng to have wild sex with my wife  and forcing a flacid penis in her which damaged my penis which was NOWHERE in my statement. Then he left and the surgeon came in and all he kept saying was take the shots because u don't want grafting due to your bleeding issues or we can stitch your penis the other way from the curve  not to mention stitching 2nd location due to  2nd curve. I told him I didn't want shots due to bleeding everytime shot goes in several locations twice a week for 8 + weeks and his response was you just need to hold pressure where the shots are so it doesn't bleed! He is such a dumbass! 48 yrs of dealing with hemophilia for a surgeon to tell me that🤬. Pressure does no good if I'm bleeding. My blood can't clot without an infusion of clotting factor.
Then doc says you don't qualify for them anyway due to only having 20%curve. And my wife and I were like how did u get that and he said from the pic u brought. Which we told him it was half erection. He still didn't want to do test to see full erection full bend/curve. I had to ask him about implants and he said I didn't need to go that way because they didn't work well and I would be in every 6 months to replace parts. he then went right back to injections and saying that was my pathway to go. I then ask what was the fix with injections and he said anything over 10 degrees was a success. So I ask him if the curve was  45 and higher and I couldn't have sex, and shots got it to 35 but I still couldn't have sex that was a success to them? And to add the scar tissue could come back as another curve. His final statement before I left was work with what u have and come back when you decide about shots. Also, he informed me the PE was not considered erectile disfunction.
Again 🤬

Waveboy, so what did they do after you punched him out?      :) ;D :) ;D

Don't be offended.  I know it is not funny, but you cannot change it, so you have to laugh at the damned absurdity.  My understanding is by his own report; he only does 30 or fewer implants a year.  I would not let this man touch my penis to do an exam much less surgery.  It sounds like he did not even offer an exam, much less a Doppler Sonogram.  Next, any implant surgeon must know that they do NOT replace parts of an implant— it is sad that some men no doubt place their confidence in him and follow his recommendations.

Now the good news.  You have just successfully completed one essential step that gets you closer to your goal.

So Hawk. I think my wife could have done the punching n prob felt better😁.

I agree it was a next step in the process. I had my mind wrapped around that going in. I'm just floored and pissed that doc never read the referral and acted like he knew all about hemophilia cause he stated he just did a case with a patient that had that. I quickly responded that it was a simple case n not a big bleeding area and he was like you're right. Shocker, the bleeder knows better!

Then when he kept going on against implants not working is when my wife was like, how many do u do?  He answered less than 30.  At that point, I was glad the resident did the exam. Not! He was just as lost, But look at the teacher.

Back on topic. I'm going to change our approach with these docs cause they not reading what I'm putting down!

I left thinking no doc knows how to cover this unless they been through it. Because u know they go home after a visit like that and have the option for sex and we don't. That will piss u off enough right there.

Tks for your comment and your site to help get through it all. Sorry I'm not as detailed as some of these post

Totally knock the Premature Ejaculation out of the discussion.  It will have zero bearings on the solution you need.  Any fact that is not relevant will just confuse the issue.

I would stick with
1. I have Erectile Dysfunction - Oral meds do NOT work.  I either cannot get an erection or cannot maintain an erection if I manage to get one.
2. In the rare instances in which I do temporarily get an erection it is curved at 40 degrees or greater.

No one makes you have sex to see how your penis works.  Keep it very simple.  What you and your wife report "is the case."

Hey Waveboy. I was reading your post. You are doing the right thing in searching for a solution to your problem and looking for help. But it looks like you are not having the medical care that you deserve. And especially with penile implants, first time installation is key. 

Have you considered some of the top doctors often mentioned here? May be very far, but you know you would be in good hands!

Also give this website a good look. I heard several people mentioning it already.

https://surgeo.com/penile-implant

https://surgeo.com/qualify-surgeons

Tks pfract for the sites. My wife an I will look into it.

Tks hawk and yes they not getting pics of me n wife having sex! They ask for top n side pics , but now it's obvious they use those measurements instead of doing it correctly. they don't get it that once u get that erect u can't keep it there much less say hold on let's get a picture

Good to know Wave. Also, an advice...  Don't use Paul Perito. Never. Run away like the plague, even tho he's near you.

That website lists doctors that charge that fee, and only that. That's what you pay. Complications are also included. Read the faq. Very nice.

Pfract please message me on last post when I can chat with u. Tks wb

So starting around 2 today, I completed a full circle from starting with my primary doc in Feb. about Peyronies, which went almost 2 months to get to urology, that couldn't help. Urology sent me to surgical specialists. He was against an implant and was for injections that would make me bleed and get hematomas which the surgeon quoted "just hold pressure," which doesn't help my bleeding disorder! Both the specialist and urology docs ended the visit with the statement, "work with what ya got!"  They didn't listen to any history or that I couldn't have sex because of bend and pain in my penis, so what the hell could I work with. Back to today, to primary, that seems to be the only dr willing to listen. My primary says this is another step closer to fighting the insurance company. So I have to stay strong with my emotions and continue the insurance battle. But I have to give tks to my bride for moral support and helping argue with these companies. I am sorry for all the guys out there without support. The support is in this forum. And just to say, hang in there and don't give up. The struggle is real physically and emotionally. And thanks again for this forum! Til next battle, take care. Yes, I'm one step closer!!!!

You are right.  It is exactly that, one step closer.  If the insurance company and doctors knew the team they are up against, they would save themselves some work and throw in the towel.  I am not sure how long the struggle will be, but I am betting on Waveboy and  BoykinLady !!!

Waveboy, so sorry for what you are going through! I will pray for a good outcome for you. I know a little of your frustration, almost 7 years ago I found this site snd it changed my life.
Stay strong and you are blessed to have such a supportive wife.
You both sound like wonderful people.
Prayers and blessings for both of you towards your goals.
StepOne

Hello again.

It has been since may 6th we've all talked. Sorry for the delay, but things have been very busy!

I had to deal with a lot more red tape, doctors, and insurance to get things approved.

July 22nd come around and I was supposed to see my surgeon in Tampa. I drove 6 hrs, one way, to be told I was seeing one of his fellows, because my surgeon(Dr. Rafael Carrion) was out of town. I was not happy about it and let that doctor know this. She understood and they made another appt on Aug 4th so see the correct surgeon. Another day off from work- another 6 hr trip to Tampa.

So, when I see Dr. Carrion on the 4th (the correct surgeon) they did the ultrasound and confirmed severe ED and Peyronie's! I had zero response from the shot. He is the only physician for the past 1-2 years that did ANY testing. He gave me choices about the Spectra malleable or the IPP. Due to my hemophilia and previous mesh abdominal "screeen door" from 3 prior inguinal hernia surgeries, it was going to be complicated either way. I chose the IPP with consent for the stipulation that I may only be a candidate for a malleable due to complications from hemophilia. At this point I had no choice. Even a malleable would improve my life, however, I still preferred the IPP. Surgeon stated that he would go that route if it was safe for me in surgery and bleeding, otherwise it would be the malleable. He had my health in mind first! I was good with that on the understanding that IPP was first choice! He stated for me that he would use the LGX700CX with my anatomy. So we left that apt with him stating that the hospital was on Covid regulations in the OR and they would call when they were lifted. I had to wait because hospitals were only allowing emergency surgeries (due to Covid precautions) and had taken away all non-emergent surgeries requiring patients to stay overnight. Normal implants are usually a same day procedure but due to my blood issues, I required an overnight or a 23 hr observation with potential to be admitted. So, we waited and continuously argued for surgery dates and finally received Oct 4th, at Tampa General in Tampa Florida- 5 1/2 hrs from my home. We were super excited to have come this far, regardless of circumstances though!

Day of surgery Oct 4th.

We woke up at midnight and drove the 6 hrs to the hospital. We signed in at 630am to do a Covid PCR test, even though my surgery wasn't until 1030. Once we signed in they wouldn't let my wife or I even leave the waiting room due to Covid lock downs in hospital. Let's just say South Florida is less advanced when it comes to Covid.... Covid test came back neg. WooHoo,  we continued on to step 2. They wouldn't let my wife back in the pre-op area due to Covid rules but finally my surgeon come in and I asked for her, due to no one told us what was going to happen regarding my hemophilia. We hadn't seen the Hematologist at Tampa General, other than the tele-med consult 2 weeks before. Next thing I remember I was upstairs in a room about 6 pm. Then they finally let me see my wife! They kept us apart for 12 hours. She didn't see me in recovery and almost went to jail a few times, I am sure of it. Message came to me through a nurse that I received my implant. I didn't have an indwelling catheter and I was just wrapped up. I had 2 JP drains placed. One for the abdominal incision for the reservoir and one for the scrotum. Nursing staff on day shift wasn't very nice and informative. They kept telling my wife she couldn't stay -that she would have to leave at 830pm but they didn't understand that I had to get infusions every 12 hrs with only a 30 min window to keep my blood thick to clot. They didn't have orders from the hematologist yet either. Luckily, the night shift was more understanding. I needed an infusion at 10 pm and they let my wife stay until that was done. I was in and out of it from pain meds and peeing every hour, but still from the bed. Through out the night they kept scanning my bladder to make sure I was peeing enough, but the machine kept malfunctioning. So, early in the morning some med students came in around 6am just to check on me but no one could tell me anything. Finally my wife was allowed back in at 8 am, after sleeping in the car all night. She was too afraid to leave to go to the hotel due to my hemophilia infusions and complications. About lunch time we started receiving information about surgery. They got me up to walk to bathroom to try and pee there. At 1pm  the PA came in and ordered an in and out cath to empty my bladder which is when they learned their ultrasound machine was wrong and my bladder was really full. They started to keep me another night but came back and confirmed with my wife, who is an early retired nurse, that she could cath me at home if needed and they discharged me Tues afternoon at 430! Holy crap, 5 pm traffic in Tampa and it was raining buckets. Pain meds given and we have a minimum 6hr drive. So during the whole trip, every hour I think I have to pee. That is a 20 min ordeal with getting me out of the car to stand and pee in a urinal. Traffic was a nightmare, weather a nightmare, and I have to get infusion every 12 hrs at 1030pm. So to recap, we left Tampa at 430pm, at 1030 pm we are only halfway home, need to find a rest area with some light for my infusion that my wife has to place a IV line in me for my blood meds. The hospital blew out most of my veins trying to get IV's placed before surgery. After a 45 min episode of drug addicts at the rest stop in Ocala, rain, and lighting issues,  we finally got a place to run my infusion. On the road again. Finally getting home around 2 am. My wife going on 2 hrs sleep since sat night(3 days).

Day 2 post surgery
So we got home about 2 am this morning Wed Oct 6th.  My wife has to start cathing me every 6 hours due to my bladder is starting to spasm. We have to re-wrap the compression dressing due to urine leaking out soaking the bandage every 6 hours as well. That first dressing change was when we noticed just how much surgery I had. I had 2 incisions above my penis; one to place reservoir, the tube crossed over my front screen door for hernia, then an infrapubic incision to place pump and cylinders. Then we notice a 3rd incision at the top of shaft on the back side where they did penoplasty to fix the Peyronie's. I was told not to mess with anything as for as cycling until 3 weeks out due to the reconstruction. No baths, just showers. I felt I was doing well at this point. I was sent home 20% inflated.

Day 3
I woke up about 3 am with extreme pain in my ass, literally! My wife and I check the surgery site wondering what was going on. In the middle of the night I developed a massive thrombosed hemorrhoid that hurt like hell. Now I am dealing with a bladder that is in constant spasms and making me leak and pee all over myself and my ass is hurting! I manage to suck it up with pain meds until I get to see my primary doctor tomorrow. To make matters worse, all of my doctors are an hour away from where I live. Along with going to see my blood doctor for follow up on infusions and drawing blood, I felt like I'd never get pain relief or get to lie down. My infusions were still every 12 hours and it was a nightmare to get a good stick on me after the hospitals chop job on my veins. My wife is up every hour with me checking on me so she is still sleep deprived. Some time during the afternoon my bladder just gave up. No more peeing without the catheter. My wife starts calling the physicians office and sent messages through MyChart, to no avail. We had a plan for her parents to come down and help my 13 yo to take care of things around the house and when we got home both parents and 13yo were sick with colds, so that was one more thing that went wrong. They had to stay on the opposite side of house from my wife and I. If i'd have sneezed or coughed, I'd have died right there!

Day 4

Day 4 started like day 3. About 3 am I developed a different pain down there like a knife/ sand spur that I felt like I was being torn apart. I had never felt this kind of pain in my life, even after all of my surgeries. It was the pudental nerve that was flaired up from the hemorrhoid. It is located between your anus and the edge of your scrotum. Trust me you never want to piss that nerve off! I couldn't sit up in any position without in agonizing pain. Thursday was a very painful day due to riding in the car and in wheelchairs at doctors offices from 10 am-5 pm. They referred me to a general surgeon the next day and the blood doctor ordered a STAT PICC line to be placed in my arm for infusions due to the challenges that my wife was having getting IV access. Bonus-the infusion specialists were having trouble getting IV access too. Luckily, the vascular surgeon was top notch and got my PICC line done early Friday morning.

Day 5
Back to Dr.'s offices for the general surgeon to tell me he can't do anything about the hemorrhoid because I had just had surgery on my penis and he didn't want to cut on my butt and make things worse- "Just put hot washcloths on it hourly to help relieve pain"! At this point,  I was an emotional wreck. Thinking WTF! why are all these things going wrong. I never read about all this on this site! I have one doctor saying I need to get out the bed so I don't get bed sores on my ass and back and another saying don't sit or stand because that will make hemorrhoid worse and the nerve flair up. The only thing they agreed on was no straining! I knew i had to get off the pain meds cause it was constipating me, but on the flip side I about crap myself to death prior to surgery due to being so nervous. I hadn't been eating much- mainly just enough to get pain meds down and not be sick. My wife kept telling me I wasn't constipated, just empty. I started the Lactulose Rx anyway just to be sure.

Day 6
First day of not having to go anywhere. I felt like a rotisserie chicken in the bed. Doctors started me on FloMax to help control my bladder spasms. Started leaving my penis unwrapped so skin can have a break to heal! First attempt at a shower with a shower chair and wife helping. I had to stop twice- thought going to pass out. Pain coming from all the other things. Penis and surgery site still numb feeling. I can feel the pump though. Feels like a brick down there. My nuts are like what the hell did u put down here. They are sore and pissed off. We read in the OR notes when we got home that they left me 20% inflated so scar tissues didn't set in and mess things up.

Day 7

First day the nerve down there has calmed down and the hemorrhoid is still there just not as inflamed. This day was the first day i started reflecting on what I had done to myself. Would love to say it was a great day but it wasn't. Very much like a roller coaster ride. Each time I go pee i am using a urinal laying in bed or having to sit on toilet because I cant bend penis down and move around with a hard on. I know its only 20% but that shows and I have always been that man that always made sure i wasn't showing. Wearing scrubs to work everyday is a pain. Thankful that I read in the OR report that I had 21cm cylinders placed with one 2cm rear tip extender on each side. That would put me at loosing no length and the curve is fixed. It will just take time and healing to get there. So on this day I would have great emotions and bad emotions. I am so thankful for my wife for her help emotional and physically. She finally today was able to get 6 hrs of sleep in one night!

Day 8-13

Each day is getting better. I am able to get from the bed to recliner! I need assistance to get up and down and still unsteady walking. My delayed recovery had been from other things happening, not the implant, Now we are in week 2 and the doctors office sent email to start moving pump around but not deflating or inflating. I cant take bath and warm area up so I'm having to put heating pad over waist. Pump movement is not easy at all. It feels like it is stuck to skin inside sac. Yes makes things sore and I'm very weak feeling. No much success this week with any movement of pump- cant get it unstuck. Good things this week- I don't have to get my wife to cath me twice a day cause FloMax is helping with bladder spasms and other areas have calmed down. They will flair up if I try to sit straight up or sit in hard chair. I can't answer question of what its like to cycle because I am told not to do that, due to my surgery site from reconstruction area cant be messed with. I still have sutures from the penoplasty and with a bleeding disorder, rupturing sutures is never good. On day 12 I went in and got my PICC line taken out and took my last infusion for my blood! To celebrate that day, I walked in and out of that doctors office, no wheelchair for me! It was a great day!

Day 14 - 20

Yes I'm doing a week at a time now because things have leveled out some and I am thankful for that. Surgery sites are healing up and swelling has gone down, in fact there is no swelling. I was stressed some on that because my penis started having some wrinkles in areas not normal, but it was from swelling and the reconstruction part. Week 2 the head of my penis started having normal coloring in it and I started having more feeling when touching penis and around surgery sites. Pump still feels huge and still feels like it is stuck to my skin. 2-3 times a day I am trying to move it the best I can. Off all pain meds! Have to take Tylenol in the evenings after messing with the pump. I am able to get up without assistance and I am starting to walk around the house and the yard more. Have to start building up my strength cause I lost it very rapidly. This 2nd week has been a down hill week! My emotions are getting better. I feel things are getting better!

Day 21 -Oct 25th

Its Monday am. I am able to get up on my own and go pee in bathroom, alone! So when I woke up at 230 am and went to pee I didn't think anything of it. My wife woke up at 7 am to go pee and she panicked and woke me up wanting to know where the blood came from in the toilet. It was enough to be concerned. After a quick strip down of my clothes and the sheet we figure it was from the reconstruction site. where blood had filled penis from night time erection or partial one and scab and suture broke loose and all ended up in toilet. Yes, we were good and awake then.  I have my follow up with my surgeon on Thursday and I am thinking this has just set me back and I was gonna have to do blood infusions again possible have to do this each time I want to have sex and pump it up. I was not in a good place today. The next couple nights I didn't get much sleep, but I had no more bleeds. Still have all the stitches and glue over surgery sites.

Day something. Its OCT 28th day of follow up post surgery

So here we go again to Tampa. 6hrs. We left 2 hrs early just in case. We look at the weather and there is a severe thunderstorm line right in out path the whole trip. WTF!. So heavy rain like 30 mph on I-75! Had to pull over twice and went through possible start of tornado! Just to say STRESSED OUT for 8.5 hours of road trip down there. Surgeon did see me even though we were 30 mins late!. He was happy swelling was gone and he said healing was very good. He was concerned about the bleed on Monday and part of site on shaft wasn't completely healed. He tested the pump and he deflated and partially inflated and deflated to show it was working but he told me 2 more weeks without cycling due to penoplasty site wasn't healed enough and if I cycled too early, I would tear sutures and would possibly get infection but he was happy about everything else! He confirmed that with my hemophilia and all that was needed to be done with me, no other surgeon would have taken on my case and he was again happy how things turned out. He showed me how to move pump around and the feeling of pump sticking to skin would go away over time and I would have more movement. He only wants me to pull the pump down very gently.

So now its the sat after apt

I'm going to try and find better chairs to sit in and go to some neighbors house for an afternoon cookout seeing as when I left out of the doctors office he deflated me some and showed me how to position it up without hurting and wear a tighter brief underwear. So off i go. I will update you as I move along. Only issues that I still have to work around is having to sit to pee with leaning forward because I cant point penis down to pee. Otherwise, things are good. I did notice today I really don't like cold weather because  my balls and sack are pulled up tight with pump there now...it keeps things pretty sore.

I stayed at the cookout longer than I anticipated. I was a bit sore the next day but Tylenol and rest helped.

ps- about day 5 -I was very concerned about a lot of things happening. My wife said "Lets see if Hawk has time to talk". He called and we talked for a good 45 minutes. My mind was at ease and I knew I wasn't alone. That was a huge relief and I just want to say thanks for the ability to PHONE A FRIEND!
Special thanks Hawk! You rock!

pss-* Dr. Carrion is the Urology department head at University of South Florida who has mad skills but his staff response time to questions and everything about Tampa General absolutely sucks.*


til later or until 2 week follow up with training on cycling. Waveboy out!

This is not just an expression.  I honestly did not know whether to laugh or cry reading this report.  I wish I could give you both a hug.  I wish there were some PDS Forum war medals I could officially award to both of you.  The PDS Medal of Honor, a Purple Penis Award, and several others.

This great articulate post leaves me with so many comments I want to make that I don't know where to begin.  One thought is that this pretty much illustrates how strong the drive is to have sex.  What other reason would make someone elect to go through such an ordeal?  I doubt anyone would endure this to be two inches taller, have a great golf swing, or have movie-star looks.  When this is all working as planned, hopefully, you will never get bored with sex.  :D

Keep in mind that you have had so many years of issues with Peyronies Disease, and PE that even when your penis becomes unstoppable that it will take months for your brain to catch up.  You will have to form new pathways of thinking.  You will evolve into completely different sexual thought patterns and behavior.  It will be an exploration to rival any Star Trek voyage.  Merrix touches on this some in his journal.

PLEASE keep us updated.  We must at least have the closure that the goal was realized, the quest was completed, and the two of you finally have what you deserve with each other.  What a team!!!  This journal will have the special recognition it deserves.  I just have to figure out what that is and how to do it.

You are both in my prayers.

All I can say is "Wow"!  You have been through the fire so to speak.  You still have your sense of humor.  I laughed when you said, "I felt like a rotisserie chicken in the bed".  I got a visual with that.  You are an example of strength and courage to us all!  I pray for continued strength and healing for you and your wife!

Thank you Hawk.
It has definitely been an experience, to say the least. The now funny part is my hubs only hit the high spots with his post. There was so much more going on that kept me thinking "How do these guys even survive if their wives aren't nurses?". I was, and still am, dumbfounded by it all. I guess anyone else would have had to be admitted to the hospital but Tampa General is a horrid place.
I don't know how they made US News Top Hospital 2021. I know it's a teaching hospital but man, the incompetence is astounding. The good news is Dr. Carrion operates at 3 hospitals and has 3 offices. If anyone is interested in using Dr. Carrion, they have other choices besides Tampa General.

I will say that with Covid precautions, from my professional opinion, I would not recommend having any surgery unless it's life threatening anytime soon! It's a huge pain in the rear end and creates many non-Covid risks
for the patient, at any hospital observing the restrictions. Nursing shortages, supply issues, and general lack of morale, are clearly a problem.

His Home Health nurse was no help at all either. That was just another appointment to disrupt our days.. 

I do want to say that my hubs has been a very good patient through all of this. I know if the rolls were reversed, I doubt I'd have been as accepting ;D.

Mikel7 thanks for the prayers and good wishes. We very much still need them!

Thank you Mikel7. For the first 2 weeks the only thing I could control was my sense of humor. Only showed breaking down around my wife. She is and has been my anchor!

Thank you again Hawk. We read and read and read this forum throughout the waiting time trying to prepare(insert 6 types of new underwear and empty toilet paper rolls lying around in the water closet here and thanks for the heads up Merrix, literally ;)!). But waveboy's luck proved otherwise. Yes, its been a rough month. I just realized after reading your comments about how life (sex life) will change mentally and physically. I always look at the brighter side of things. Yes sex has always been at the top of my list and I just didn't want to accept, no I refused to accept, that at age 48 I was never to be able to have sex with my wife of 16 yrs ever again. Yes I had my fears, but my anger from doctors telling me that I just had to deal with what I had and nothing could be done overruled my fears. Again, I still had them don't get me wrong. Yes, I am still in the nervous phase, but prayers, love and support, from my wife and the support from you Hawk and everyone in this forum is helping me get through it and hoping that I (We) can possibly help someone else!

Today Nov 1st-28 days post-op.

I am sore in my scrotum for the 2nd day in a row. Just realized that the pain is where the pump was resting and its where I thought it was stuck to my skin. Surgeon showed me how to move pump and I have been slowly doing it daily. The pain is when the scrotum tightens up or when I walk and the pump moves over that area of skin that it was stuck to and it is very sensitive. So just another adjustment. At this point, if this is the worst part of IPP  surgery, I will take that.....with some Tylenol.

Again, just to say thank you for the prayers and the education from everyone and thanks and lots of love to my wife!

waveboy out!

Especially with the scrotal approach, the scrotum is far more painful than the penis.  It all just takes time.  It is difficult to believe at this stage, but you can push the pump bulb so hard one side of the bulb touches the other with zero discomfort. 

I don't want to give you something to obsess over, but the one concern is if you feel the bulb actually adheres to the wall of the scrotum.  That is a sign of infection. On the other hand, if the scrotum is relaxed from heat, you should be able to slip the scrotum around with it sliding freely over the pump.

Waveboy, that was a great report. You and your wife make a great team! I'm very thankful for my wife helping me through my recent revision surgery. I had to laugh at Hawk's comment that none of us would go through this to gain 2" in height, so true!

You've gone through quite a bit so far and hopefully the rest of your recovery will go well.

thank you tshug for your thoughts and prayers. Always great to have a team especially at home with my wife. To all others out there that doesn't have a wife or significant other to support you, take advantage of the team on this forum!!!!

as far as getting taller, a better golf swing! This is hilarious! This is my personality of joking when not in pain! Passion is my drive! Passion with my wife. 2 things I have had to deal with my life is hemophilia and passion! So thankful I married my wife in 2004! I didn't have to hold  back my passion anymore because I found  the right woman! The LORD put her in my life! So I was determined when Doctors said I couldn't  anymore, determination kicked in to get my passion back. So my emotions are all over the place and knowing all others didn't keep me down! Today and each day after this is a great day!!!! So someone else can try for the 2" taller! hahahahaha.

Again I suggest and recommend anyone that doesn't have or feel like they do not have a support group please lean on this team with hawk and all others on this forum!

On a lighter more positive note. I walked 1/2 mile this am and 1/2 mile in the afternoon!  Not winded and not sore! Thank GOD!

waveboy out!

Alright I am at week 5 post surgery

Dr. still doesn't want me to cycle due to area at shaft of penis still not healed. This area as of now is the only sensitive area from my whole surgery. Very tender when underwear or sweatpants hits that area.

I am still walking twice a day and still slowly moving pump around in my sac, and getting feel and knowledge of pump anatomy. Some area's of skin are sensitive where pump is leaning up against so i try to adjust or move it around as much as I can a couple times a day. These cooler days doesn't help due to the sac is pulled up tight.

I had to go to brief's and not tight boxers due to when walking the skin on the sac would stick to my leg and move things around and having a pinching feeling. Looks kind weird in public when you stop to swing each leg out to get rid of that feeling.

Emotional state is still up and down mainly trying to stay up. Just trying to look at positive side of things because I'm on the downhill side of things. Ready for shaft site to heal so focus can be on cycling.

Thank you again to the forum for all the updates and things everyone goes through. We all are human. We all need someone and a group like the forum to lean on. So again thank you to my wife and the forum!

waveboy out!   

Every day you are a day closer to the fruits of your decision and all your combined efforts.

I think I am as anxious for your to start cycling as you are.  :)

Thanks Hawk

Yesterday I past another mile stone. I know I'm not supposed to start cycling yet, but I had to find the deflate button and test the pump. Not to do anymore than a few pumps like doctor did in office last week because I don't want to test the stitches.

So off I go. Kicked back in the recliner and I find the release button. Oh by the way to let everyone know that out side from all that I had done just to add to my physical history. I have a essential tremor(family tremor) so my hands shake mildly on a normal day and worse on a bad day, pain day or using alot of strength with my hands. So again off I go and find release button trying to get grasp on the pump and press valve without it slipping, trying not to let button go from my fingers shaking and wondering how the hell I will come up with 3rd hand to squeeze penis down. I get button pressed and feel this small vibration in pump for about 1-2 secs but it only vibrated twice on the 5 times I pressed the button with deflation twice? Have to ask doc that ? next week. Anyway I was excited I figured out the deflation!

The pump on inflation was a totally different ball (haha) game. Every time I went to go and squeeze hard ass bulb it would pop out between my fingers like busting a grape open! That's a pinch you don't forget. I had to take other hand and hold back of pump in place then still trying to squeeze that thing! shout! About every 5th push I felt bulb concave a tiny bit. Something was happening because I got it up to where the doc had it before tightening stitches! Holy crap I did it! I looked at the time I thought an Hour. WTH! But then I thought I DID It!!!!

All in all I went to bed Knowing I am a man again physically and mentally! Small steps baby!!!!!

start testing a little each day!

waveboy out!!!!!

Hi Waveboy

I've just read your journal here from start to finish. Fascinating stuff from you. Thanks for sharing in such intimate detail. There were, indeed, some laugh out loud moments in there - particularly when you said "you don't want to piss that nerve off anytime soon". I laughed cos I remember similar, excruciating, breathtaking pain. It really did take my breath away at times. However, you are now at week 5 and by far you are over the worst of it all. You have shared some very dark moments there and it's so valuable to do that because what you will experience now, from this moment on, makes all the pain worthwhile. I remember those early days too, when your 3rd ball would shoot out of your fingers as you were mid-squeeze. Nothing can prepare you for that one and we have all been there!! 🤣

Heartening to read that your wife has been your anchor as you say. At aged 48 you have decades of your fantastic relationship to enjoy and explore. You'll be like a 'kiddie in a sweetie shop' as we say here in Bonnie Scotland. So much exploring of each other that was never possible before - but now that you're bionic, your PE will become a very minor irritation to you only now, as your wife won't even know whether you've cum or not - you'll still be rock hard til you press that magic button.

Respect to you for your journey and for your journal.

Roddy

Waveboy, that you're feeling feeling the vibration pressing the deflate button is great, you're doing it right. You should squeeze your penis after feeling that sensation to completely deflate the CX. I had a CX before my revision and that's how my CX worked. To inflate you should give the pump ball one quick hard press to start wait a couple of seconds then start pressing the pump ball again. On the second or third pump I would feel a pop in the pump and the rest of the pumping would be much easier. It will get easier the more you practice inflating and deflating.

Good luck

Thanks Roddy for the light at the end of the tunnel!

Thanks tshug. Did they switch you away from cx just due to the severe under sizing? or was it something else to do with cx? I haven't felt the vibration on each of the deflation but button works with deflation either way. Just didn't know if was a problem or not. Thanks for the heads up on pumping. Still have to figure out a way to grab it without it slipping to get that pump on! I will look and feel for that pop. earlier today I achieved a full deflation or the most I have achieved yet. I will try again on the pumping this evening. I figured I could at least do it up to the inflate before pulling of stitches. At least that would give me practice. Especially since doc office just called and moved my follow up apt another week out.

So a ? for anyone. I achieved what I felt is complete deflation and I can feel the cylinders starting to fold. Is this safe for long periods of time? Mainly 10-11 hrs while I am work. I wear scrubs and I need and choose to conceal this new bionic tool.

waveboy out!

I'm glad you've almost completed the journey.

I always grab the top of the pump where the tubing comes out to hold the pump when squeezing the bulb with the other hand.
My hat's off to anyone who can inflate with only one hand.

Inflating with one hand is doable but risks the pump bulb (that resides on the slippery side of the scrotum skin) shooting out from between your fingers.  To those without an implant, it is something like putting silicone oil on your fingers then squeezing a marble as hard as you can until your grip is slightly off-center and the marble shooting out of your grip and across the room.  In the case of the pump, it usually gets its path cut short by striking a testicle, much like shooting a marble with a big shooter to those who ever played that game.

I think we have all done it, but the instant unpleasant shock and awe are enough to instruct you on how to avoid it.  I usually lay the index finger of my other hand very lightly against the pump bulb to prevent that.  If it happens after you are totally healed, it is not pleasant, but it is nothing like it is when your entire scrotum is still sensitive from surgery.

The AMS/Boston Scientific is significantly easier to deflate than a Titan.  In fact, some think their pump is defective because they accidentally deflate it while inflating.  I don't think it is possible to accidentally deflate a Titan.

Thanks thomas and hawk.

great example hawk. Yes on the deflate while inflating. The reason I can see that is if you holding the pump trying not to let bulb slip out of you fingers and you don't realize or feel the button on the released valve you might be pressing it at the same time. I know some people dont have great feelings in their fingers. Luckily thats not me.

Thanks again for advice. Will be trying again today. On the pump up. I am getting better on the release / deflation. Baby steps right!

waveboy out

Waveboy, the decision to go away from the CX was Dr Eid's and my choice. Dr Eid felt and was right that the Titan was the best choice for me. There was nothing wrong with my CX other than my surgeons incompetence on how to correctly size one. I would have preferred a Titan for my first implant, but my surgeon/hospital only offered the AMS CX or LGX and he probably would have mis-sized a Titan too.

Thanks tshug

Just trying to fig all my bionic's. Trying not to get frustated

Waveboy, you will be everything except frustrated in a few weeks. 

IF you are straight enough for intercourse and your girth is very close to what it was the week before surgery, the Titan would have given you no advantage.  The cylinders start our a litter stiffer when new, and the pump takes a little more dexterity to operate.  If you have a hand tremor, that could be a disadvantage.

One could argue that you might have avoided the surgical work on your plaque with a Titan and a different surgeon, but that would be a guess, and that is water under the bridge.  It might give you a little longer recovery, but the final outcome will be the same.  You and your wife pulled off an amazing feat considering the obstacles.  I would probably still be sitting here with no implant trying to figure out my options. 

Thanks again Hawk.

Yes my wife and I went through a lot. Yes I say both of us because we are a awesome team! I went through a lot of physical stuff as most of you have been through on this forum. 95% of the time my emotions are in check and I am looking at the positive side of things. I am one that tries not to ask for help but this is out of my wheel well and I am truly thankful. I just worked again on inflation again and it worked better. Just gonna take time. sorry for the jumping the gun on concerns, but I am getting better responses here than waiting on doc's office to call back.

thanks for showing light at end of the tunnel!

waveboy out

You'll get much better response in here than from a doctor. Not saying anyone knows better - just that they're eager to help and reassure, and offer help if we know the answer. Don't worry about the deflation - Hawk had told me more than once to try and remember from muscle memory where the button is. One day it just clicks (pardon the pun) and then you simply reach for deflate with no thought process from that day on. Remember how ridiculous it was to change gears in a car, whilst braking at the same time and checking your mirrors and indicating? Then you'd think it ridiculous if anyone told you that was a difficult thing to do in life. 🤣

Thanks roddy

yes I am running with the muscle memory and changing gears, fixing mirrors. I am just glad others have been through this and chat about it in this forum. I know it was just 5 wks since I had my surgery and all the time before then with all the problems. I am just amazed that 20+ years in the medical field and all the people I have met and friends and family I have never heard about all of this. So again I am thankful for Hawk and this forum. Things are working out better each day!

waveboy out!

So an update. 5 wks post surgery

So correct me if I am wrong. Between asking ?s about this pump and my bionics. I have learned how to grab hold and deflate good and how to grab and press bulb in without it slipping! What I think I have figured out is that I was looking at all the wrong things. I thought with 35+ pumps I would be all I could be. I was rushing things is what I have learned. This evening I was able to get 15 great pumps and it was inflated and strong! Yes much shorter than before, so I tried pumping again and the bulb was rock hard. Then after taking a breath a light bulb clicked that all this is new and hasn't had time to stretch so 15 pumps is all cylinders would hold. Remembering comments yal have given me I took a moment and let it sink in!!!!! Waveboy this is not a race its a marathon! I  do feel much better and stress level wayyyyy down.

thanks again

waveboy out!!!!

Waveboy, first of all, you are not supposed to be cycling due to the surgery on your plaque area.  Do NOT screw this up with impatience because, after years, you cannot wait a couple more weeks.

There are partial pump squeezes and full pump squeezes.  They cannot be counted the same.  A full pump squeeze where the walls of the pump touch each other equals a one-pump. Anything else is a partial pump.  After pumping all you can (WHEN YOU ARE CLEARED), you can wait several minutes and usually do 2 or 3 additional partial pumps because the tissue has stretched some.  With a real stretch, your penis will have a LOT of discomfort after 20 minutes.  It will be screaming to deflate because the tissue is stretching.  If you measure, you will see an almost weekly increase for at least 3 months, maybe much longer.  Fully pumped, your penis will be at least as hard as a 17-year-old.

I agree with you hawk.

It stops before it get tight where the surgery it was, but I will stop and keep it deflated if it will not hurt anything to be deflated until the 19th of Nov. Your thoughts? as far as your description on pumps it probably got 5 full pumps then 10 partials at best today but I will leave deflated unless I get different answer from you or an update on follow up.

thanks for your opinion. Always respected.

waveboy out!

To add to my comment last night hawk. I have only tried pumping up 4 times since i saw the doctor last. Mainly to prove to myself I was able to do it and when I went back to the doctor on the 19th I wasn't learning it then and there in the office and be in extreme pain.

I do not want to screw anything up for sure! Asking a lot of ?s here so when I get to the doc on the 19th I can ask the same and see what answers I get. Just for confirmation.

Again I appreciate everyone's comments! I will be checking in daily here. I go back to work on the 12th to see if I am cleared in the medical field to work. Doc has cleared me for past the 11th. My follow up with doc was supposed to be the 10th but they moved it to the 19th due to doc not being in the office.

So as far as an up date. I am walking 1-2 miles a day to build up my energy level and not be winded. No pain just a a mild dull discomfort in shaft here and there. Just taking 1 tylenol a day.

waveboy out!

Hawk, thanks for keeping him in line. I had no idea he was pumping. Now Waveboy is going to have to walk around the house in his underwear until he goes back to work on 11/12 so I know he's not misbehaving ;D.

Roddy, thanks for helping too.

This has certainly been an experience for both of us!

In all of my years of nursing I've never been asked some of his questions and have no idea how to answer. I never had an IPP patient. Thanks to each and every one of you that have helped us learn. I have a mad new respect for uro nurses.

Waveboy has officially been evicted from my recliner. He has recovered enough to get busy doing things and quit obsessing over details that he shouldn't be, at this point in his recovery.

The fact I am on here telling you guys all of this, is a testament to his speedy recovery. That's a great thing because he needs to get out of my house. LOL

Much love to you guys!

It is amazing the things you can learn about your husband when you read his posts  :D :) :D

Hopefully, he can get his penis to hang enough that he can go to work without it sticking straight out or you might have to follow him when he leaves the recliner and goes on walks ;)

So start of week 6 post op.

Feeling good with no pain or discomfort. Was told by my private nurse to leave it alone and stay deflated. So I am still letting area on the shaft heal. Still walking 1-2 miles a day.

I go back on the 19th to get educated on how to use pump and deflation per how the doctor says with this model. I do thank everyone for how they use theirs. Sometimes I get ahead of myself. I am not one of those people that can just sit around. I have to be doing things do I will overthink things. So my private nurse/ wife has banned me from the recliner. I have 5 more days out of work but she will put me to work today.

So I will update as I go.

waveboy out!!!!

Walking everyday is very good. I walk about 1.5 miles each day.  The recliner should be taped off for you.  Good report!

Quote from: Mikel7 on November 08, 2021, 02:52:45 PM
The recliner should be taped off for you.

With "Crime Scene" tape !  The scene of unauthorized pumping  :)

HaHa Mikel7 and Hawk take the side of the woman!

Don't worry I would also!

Been busy all day outside with my 5 lbs weight limit. Did a mile this morning and a lot of movement this afternoon with yard work walking and riding golf cart.

Just a little sore nothing a little tylenol cant handle.

Try some more tomorrow. So I get minimal time in recliner. Observed of course!

waveboy out!

waveboy here.

so last week, the end of week 6 I had my follow up with the doctor to get clearance to start cycling. Woohoo all wounds and stitches cleared to start cycling! Very interesting visit. The doctor made couple of pumps and then deflated and tugged on the pump stating I need to start pulling pump down more. That was the only sore part is when he tugged on the pump. So he said you do it. So I got in my stance and grab the pump and bulb (because I didn't want it to shoot between my fingers like a grape again and put me on my knee's). I got one great pump in and I was like woohoo Off to the races we go. The doctor was on the computer typing while I was in motion, and I let the bulb go waiting in it to inflate/ fill up again like he had done, but it stayed compressed and I thought WTF I broke it. So I was like doc whats up and he never looked up from typing and said give it a sec and keep going. So my second turned into 10-15 secs and again I was like Doc whats up! He turned and felt it and was like hmmm haven't seen that and tugged on pump again moved things around and it popped back open. Now try again as he said. Of course I lost in what to say but I went back at it. I got about 12 pumps in and felt the tension in cylinders. Hot damn I could have a hard on again without the curve! Then he said deflate and in my mind I was thinking I just got it up! He told me I would have to work on full deflation but it would come in time. I needed to cycle at least 2 times a day for an hour. That drive home was probably the best drive home from tampa because things started working. Thank GOD!

That visit was Friday Nov 19th. So of course bright and early Sat morning I wanted to start cycling ( it had been 6 weeks and I was clear to cycle!) but he did say it was gonna be 3 more weeks before sex! that was the depressing part, but I will take the cycling part. So I got into my reclyner that my wife/ home nurse said I could get back in did the first pump and the damn thing stayed compressed down again! WTF! Didn't happen to the doc when he did it and now twice when I did it! Ok ok waveboy just calm down! So I tugged on the pump shuffled things around and boom it filled back up!!!!! So I went back to pumping making 12 great pumps where it compressed all the way down then bulb got almost rock hard so I figured best way to get death grip on bulb to make several puffs. I would wait about 2-3 mins once shaft was tight feeling slightly uncomfortable and when the bulb would let me I would get 2-3 more great pumps and more puffs. So saturday was interesting sore but tolerable.

So each day Sat and Sunday I cycled twice a day. Then monday morning came and it was work day. Unable to spend time for 1 hr cycle in am when you get up at 5 am to be at work at 630 am without a bonner in a set of scrubs! So my cycling with have to be in the evenings! I spent most of my days monday, tues and wed trying not to show anything at work so several times each day I would have to go to bathroom to deflate. Don't know if its running back into my penis after deflating from pressure in pouch or what. Lucky it was a short week at work for the holidays. Each evening I was able to cycle for and hour( thankfully the bulb has not compressed and stayed down anymore cause that was scary). It still takes me close to 30-45 mins to get pumped up to the uncomfortable tightness. I get about 5-6 good pumps then bulb gets so tight that u can't squeeze it. I will get couple puffs. Then I am tugging on pump downward then resting a few mins then bulb will let me get 2-3 more pumps. Hopefully that's how I am supposted to be doing it! I'm just glad I see a hard on!

I tried a bath and cycling and there was no difference in pumping. bulb still tightens up and I am no where close to full. So I change positions. I have cycled laying in bed, in bathtub, reclyner, standing and laying in bed with legs bent. No change in couple great pumps then bulb to tight to pump then changes to puffs. after 2-3 mins get those 2-5 great pumps. So we will see.

Today is 1 week since starting cycling. Still the same with pumping. I am getting better with the emotions of being aggrivated about the bulb pumping. I'm just doing what I think is right. I am getting way better at deflation where it is complete deflation! Still working on the keeping it deflated without it draining back into penis. Sometimes I give a pump after deflation and that works.

Once pumped up I am still showing 2 inches shorter in length than before peronies. Thickness is almost back to normal. But reading in the forum I just need to give it couple months. I am thankful for all the positive things that this brought me.

If any suggestions or statements let me know.

Waveboy out, thankful and blessed!

Great report, WaveBoy!

Only one thing makes the bulb stay collapse.  It cannot get any fluid from the reservoir.
Only two things can cause that
1. You are out of fluid because you pumped it all into the cylinders OR it leaked out because of a break in the system
2. You have a crimp in the tubing that goes from the reservoir to the pump.
You obviously have the 2nd one, or moving things around would not correct the situation.  I don't recall hearing about that before, but at least you are getting it to work.

You sound like you are auto-inflating during the day.  If you cannot resolve that within the next ten days, it is very likely to be an issue for as long as you have that implant.  The only way to resolve it is to stretch the scar capsule around the reservoir.  You do that by drawing every drop you can from the implant both in front of and behind the scrotum.  You then have to keep it deflated to stretch the reservoir capsule.  You can either sit with your penis in a vise or wrap it very snuggly with Coban.  I would opt for the Coban.

Size - unless you were undersized by the surgeon, the size will come back.  You can tell if you are undersized by feeling how far the tips of the cylinders extend into the glans.  The two cylinders should be close to equal length and extend at least 1/3 of the way or further into the glans.  If your glans droops when inflated, it is a sign you are undersized.

If there is no evidence of being undersized, then keep doing what you are doing.  I do not have an AMS pump, but you should be able to pump until the stretch is quite uncomfortable.  Remember that you cannot pump hard enough to damage your penis, only hard enough to make it bigger.  The more discomfort you feel, the more stretching you are accomplishing.  Increase the number of pumps and the duration.  If you cannot do a BPEL because you are too sore to press the ruler to the bone, you still have some swelling that makes ou penis seem to be shorter.

Three Questions:
1. How is the girth?
2. What angle are you when totally inflated?  Parallel with the floor is 3 O'clock. 
3. What angle are you when deflated?

Hey Hawk and tks.

So girth is not fully back but cant measure it correctly either, due to still have some questionable swelling on dorsal side of penis. still puffy.

inflated I'm aiming 2-3.

getting better with full deflation so its been at 3. Yesterday I achieved full deflation where if felt cylinders collapsed and its starting to aim about 4. Still tucking it up or rotating side to side while in underwear. Not aiming it down even in deflated.

Ok I have a question to anyone out there as far as the ams 700. To whom has one or had one. So I am scheduled to go back to see my doctor the end of this month.
When I went 3 weeks ago for what I thought would be my last follow up. The doctor was going to show me how to cycle. I have been unable to cycle for 6-7 weeks post op due to still healing surgery site on penis. So my last post I went over my visit on how when I compressed the bulb it stayed down on 1st pump. It happened in doctors office and he said that was weird moved pump around and it opened back up. Well it happened again as soon as I got home. I moved pump around and about 15 mins later it opened back up. I waited about 30 mins again and it let me pump then. So 5 days pass with cycling twice a day and then in the evening I went to cycle and bulb compressed and stayed down on 1st pump again. My wife and I looked up on the internet and found how to hold and press on pump and it will reset and inflate bulb back up. Well that worked! It inflated and it says you feel a click on first squeeze, which I had felt one time before but not each time I started cycling. So I went for squeeze and bulb stayed down again. Now aggrevation set in. After 10 times resetting and pumping and resetting I finally gave up for the night. Woke up the next morning gave it a good squeeze and I felt the click! and I was able to cycle! So 5 days went by bulb compressed about 4 other times but reset fixed and I was able to pump. This went on for another week. Then finally got to the day where I could spend time with my wife and then. Bulb compressed again and reset brought it back and kept compressing  and reset would make bulb come up. This went on for an hour needless to say go everyone out of the mood! So has anyone had this issue and how did they resolve it?

Question 2.  I do not get the click everytime I start to cycle and I give the first squeeze a good one. Is this good or bad?

Question 3. With cycling I can get up to 12 great pumps now then the bulb is so tight I can squeeze even with 2 hand grip. I wait 2 mins and I can get another pump  but then bulb tight again. cyclinders are tight but not at full potential because I still have movement of skin on penis shaft. I am not feeling the pain in penis when inflated like others are saying they feel when cycling for it to stretch back to normal. I pump all I can pump, the bulb isnt compressed it just doesnt feel as inflated as in the first 10-12 pumps. Is this a normal thing and just takes time?

Last Question. When deflated I know I have squeezed all of it out cause cylinder are flat when Let penis go. But then the left cylinder will slowly inflate to about 30% and penis lays to the right. I squeeze fluid back out and 10 mins later back again. I aim it to the left, but with moving around it shifts back to the right and left cylinder has inflated again. I have tried giving it a couple pumps to stop the auto fill. most of the time that works but I am pointing straight out then. As far as positioning I can flacid aim down to about 4 maybe 5 oclock but if it auto fills or if I pump couple pump to stop auto fill its aiming out at 3 or have to aim straight up.

I know this is a lot of ?s but I am just trying to understand more so I dont get this lost look from the doctor or a just give it time.

waveboy out!

Those are great questions and a very good post.  I hope an AMS guy will jump in and respond but they are in the minority.  All AMS pumps should be the same however even if they do not have an LGX700. If you do not get this resolved then I could suggest a list of specific questions for the surgeon on the next visit.

A couple of observations;
if you totally deflate and pump twice to reduce the chance of reinflation there is NO way two pumps should hardly register on your penis much less make you point straight out.
Any time a pump remains depressed, it is always because it cannot refill with fluid for whatever reason, (tubing pinched, reservoir out of fluid, etc)


Questions: 
Have you had intercourse?
in any case is it rigid enough for intercourse
What is your assessment of the size when fully pumped? (compared to before surgery)
Can you manually bend your penis when fully inflated?

The following men have AMS implants and are still reasonably active on the forum:
SW01
Tomas
Pichou

I might be missing some.

I can't say I experience most of your issues with my AMS pump.

I never hear or even feel a click when cycling the pump.

I think it's normal to be able to get another pump in when fully inflated, but on the next pump the pump is hard.
I don't really think the first extra pump does anything, at least in my case.

My pump never goes flat

I never feel discomfort after pumping to the maximum.

I don't bother to squeeze everything out of the cylinders, but I also hang naturally after depressing the deflate button.

Bottom line is I'd GUESS that your pump is defecti8ve.

thanks again hawk and tomas for responding back. Sorry for not responding until now.

so to answer some ?s. The only time I have been able to try and have sex was one of the nights the bulb compressed and I pressed reset button and it kept compressing and this went on for about 30 mins. Kinda put things out of the mood. So not true sex yet. It will pump up and stay hard when I can pump it up.

So as far as will it get hard enough for sex yes. As far as size, girth not completely but not far off. Length is the issue. So before surgery and before I knew about pressing down to pubic bone to measure. I just measured from base of penis with a full hard on to tip of head and it was 6.5 inches. Now with all the pumps I can get to which the most has been 20 full pumps I am measureing 4.5 inches. I just question when they say they put a 21cm plus one rte which is 2cm thats 9 inches. I can comprehend that 4.5 inches is in my body or why I was 6.5 before now 4.5. Dont know?

Thomas as far as the click, the only time I have felt it click is after I hit the reset after bulp compresses and doesnt open. Outside from that it doesnt click.

As far as hanging naturally. If I deflate and dont squeeze  it finally started hanging alittle naturally but in about an hour the left cylinder will start filling up on its on and point to the right. so about every 3-4 hour when I go pee I squeeze it down again. Hawk I tried giving it 2-3 pumps to stop the autofill its just taking longer to autofill.
So I have just adjust life with that.

I am still cycling 2-3 time a day. atleast 20 mins. And I try to get a 30-40 min one as I am going to bed. Yes tomas I am not getting the painful erection while cycling. Thankful for that. Just hope that things are going right.

Last question Hawk can I bend it when fully erect. When I get all the pumps I can do. I can hold the base and bend in all directions with some effort but I hold base so it doesnt make rte loose. Dont know if that helps stretch cylinders or not. I dont do that much.

So My wife and I have a message out to the sales rep for ams implants. To ask him about pumps. Trying to talk to him before I go to see Dr Carrion Dec 28th.

waveboy out

Waveboy, not having great discomfort after being inflated for 30-40 minutes is NOT something to be grateful for.  That discomfort means that you are stretching and regaining size.  It is the sign that you will be bigger in a month than you are now.

I hate to say this, but I suspect something is not right with either your pump (defective) or the tubes leading t the pump (crimp or kink).

It is beyond my experience and understanding to explain how all of the following can be true.
1. The tips of the implant extent at least 1/3 of the length into your glans. (suggests you were not undersized)
2. Totally inflated you feel no discomfort and your penis is considerably shorter than before the implant (suggests you were undersized or you are not totally inflating)
3. You pump until the pump bulb gets too hard to pump even with two hands (suggests you are not under inflating)
4. You are only getting a 4.5" length from 23 cm of implant and RTE (this suggests you must be under inflating) (I have 21 cm of implant and have 6.75" - 7")
5. You feel no discomfort when inflated for 30 minutes (suggests you are undersized or not fully inflating)
6. You pump bulb dents and does not refill (proof it is not getting fluid due to lack of fluid in the system or obstruction)

You begin to see the dilemma.  The two of you have to do what you excel at.  That is, making noise until this is resolved.

You also need to force some stretch of the reservoir capsule by forcing it to retain fluid.  If need be, Coban wrap your penis, or you will have auto inflation for the implant's life.

So you can actually physically feel the cylinder tips in your glans? Most of you who have gotten implants say that it feels completely natural especially when erect, other than the pump obviously. You've made it sound as if you wouldn't be able to tell the different between an erect penis with an implant and one without one. How is that possible if you are able to feel a hard foreign substance in your penis when touching it?

It takes some deliberate effort and knowing what you are looking for.  It also cannot be done if you are aroused and get some natural glans engorgement when aroused.

If your glans is not engorged and you are inflated and probe the glans feeling for the tips you can find them.  Neither the man or a partner would ever happen across them.

"You begin to see the dilemma.  The two of you have to do what you excel at.  That is, making noise until this is resolved."
I'm changing my username to Karen because I'm going to need to speak to the manager Hawk! ;) LMAO

I also have suspected a pump issue for a while. They are going to be so happy to see us go when this is finally resolved. And it will be resolved but dang, I hate it for my hubs because we will insist on a whole new implant.

I reached out to Boston Scientific on Monday and a Rep called him back today. In fact, the rep said he was Dr. Carrion's rep so that's good. I think he needs to be there for the appointment on the 28th.

Also, what is the timeline here for permanent scarring in of a defective implant?
I can't find any specifics on malfunction percentages. If anyone has them, please share.
Thanks friends!

BoikinLady,

Personally, I would subtly let the rep know you have been on a major Erectile Dysfunction / Peyronies Disease forum trying to get input on these issues.  I think they will make a greater effort to see the story has a quick and successful ending.

I doubt that he will need another implant even with a worst-case scenario.  I would hope that the most he will need is a scrotal incision to replace a pump or correct the tubing routing.  Honestly, I think he can stretch to near his same potential, but it will take longer than if cycling began right after the implant.  His gains could slowly extend over two years.


In the unlikely event, there is any discussion of a total replacement I would then ask about the Boston Scientific LGX 700 arguing that it will help him with length restoration.  They might adequately counter-argue but I would raise the issue.

Thanks Hawk,

If I understand correctly, current research shows an increase in infection rates(2.5-6%) when a partial revision is done, for any reason?? I think that's why we question not doing a whole new IPP.

Let me ask you all this question: If you had plicatation/penoplasty/reconstruction and IPP, which procedure was performed first?
The reason I ask is, if you have plaque/curvature causing the penis to be drawn closer to the body, shouldn't the cylinder measurements be taken AFTER any reconstruction is performed and penis is "freed" from any deformity, to get a more accurate measurement?

The reason I ask is, Hubs actually has more of the cylinder length internally (13cm) than externally(11cm) and has not gained any weight in the last 2 years, since Peyronies Disease began. He is not close to pre-op BPL(6.5"), even with a pre-op partial erection. He also has a fair amount of loose skin on the shaft of his penis when fully inflated.

Given these values, he is measuring BPL now @ 4.5 inches. (11cm=4.3") If I am correct, he has no room for gains and it would explain all the lack of pain during cycling and loose skin? Am I wrong in this line of thinking and calculations?

The cylinder tips extend properly 3/4 into the glans, so I wonder if order of procedure has a causal effect on post-op length.

The Boston Scientific rep has been in touch with Hubs today, after another stuck bulb event during cycling. He is going to try to get a 'local to us' Rep to see Hubs before the f/u visit on 12/28.

I will definitely have Hubs mention the Forum, great idea Hawk!

Until next time....thank you all!

Quote from: TheBoykinLady on December 16, 2021, 09:43:22 PM
Thanks, Hawk,

If I understand correctly, current research shows an increase in infection rates(2.5-6%) when a partial revision is done, for any reason?? I think that's why we question not doing a whole new IPP.

It's possible you know something I don't (which would not surprise me in the least), but I never saw stats that indicate the incidence of infection is greater with a partial replacement than it would be if you went on to replace more components.  Applying common sense that seems impossible, but maybe there is that one missing factoid I don't know that suddenly causes it to make sense. 

I admit to being more confused by Waveboy's stats than any I have run into.  Part of the problem is that the two of you have nothing to compare to, or you would know if he is approaching full inflation.  From a distance, with only verbal input, I am guessing he has never reached full inflation.  This is why.
1. He feels no stretch or discomfort.  That means he is undersized, impervious to discomfort/pain, or not inflating.  His reports of the tips extending well into the glans would rule out being undersized.
2. Because his pump gets hard might not mean he is totally inflated since the pump is acting glitchy.
3. I am 5'8" 160lb.  I measure a minimum of 6 3/4" with a BPEL with a 22cm implant.  That means roughly 5cm is placed deeper than my pubic bone.  Bone Pressed does not change with weight gain/loss. That is why it is used.  Everyone is different, but I do not believe any man of any size could have double that number.

Fully inflated at midshaft (even if he was undersized), his penis should be unbendable. While it will feel natural, no man could have a more firm shaft at any age under any circumstances.  If that is not the case, he is NOT fully inflated.

The confusing part is that with his model implant, even deflated, the penis length should be less than an inch shorter than fully inflated. This is because only the LGX expands significantly in length during inflation.  All other implants increase mostly in girth.

The local rep or even another guy with an implant should know if he is totally inflated in a minute or less.

To the Dynamic Duo - I am going to repeat myself because I am still perplexed over this and I want to re-express myself in slightly different terms.

1. My gut just tells me that a doctor of his experience would not likely undersize a patient.
2. The size of your implant tells me you are probably not undersized
3. The position of the tips within the glans tells me you can't be undersized.

All combined plus the fact that you have clear pump issues suggest that you have never fully inflated and that you can't be undersized.

                                                   BUT

The fact that your deflated length is not over 5" tells me you are undersized.

Obviously, both of these cannot be correct.

_______________________________________

Quote from: TheBoykinLady on December 16, 2021, 09:43:22 PM
Let me ask you all this question: If you had plicatation/penoplasty/reconstruction and IPP, which procedure was performed first?
The reason I ask is, if you have plaque/curvature causing the penis to be drawn closer to the body, shouldn't the cylinder measurements be taken AFTER any reconstruction is performed and penis is "freed" from any deformity, to get a more accurate measurement?

I think different surgeons proceed differently and they would likely alter their pattern depending on the case.  I do not think that order matters.  If it did, I would have to think a surgeon with his skill surely would know that.  Most likely excision and grafting would be completed first.  In my case, Dr. Eid evaluated slight curvature after initial inflation and made relief incisions in one side of the base of my shaft before closing.  In any case, I want to exclaim in puzzlement, "The man has 24cm of implant.  He should have more than a 5" Bone-pressed penis when deflated and at minimum a 6" bone-pressed penis when inflated.  If not, you could feel bent and crimped cylinders upon inflation because they could not straighten out."

Furthermore, no man should lose size with an implant from a skilled surgeon

You guys are the best and I know you will have victory before this is over.

PS: It's a dumb question but can there be ANY chance you are wrong about the implant size?

Hawk, I am just as perplexed as you and also sorry I haven't been back on to discuss.

One thing to note is -on the OP note it says Dr. Carrion was there for 'Critical' OR parts. The way the note reads is that Hub's IPP was actually done by a Dr. Buscaino, assisted by a Dr. Juwono. I am not happy about this revelation. USF is a teaching hospital and I know doc's have to learn but I don't feel like we were told the truth at our consult or in pre-op. I don't know anything about these other 2 physicians except Juwono dictated everything and Busciano was the first MD he saw when he went to see Carrion the first time, back in August. She knew he wanted Carrion because he refused to see her.

From my nursing POV, it looks like Busciano did the penoplasty and IPP with Juwono assisting. Carrion was in another OR, or close by to assist, if needed.

So here we are now..

Deflated he is 3.75 inches. Inflated he is 4.75 inches. He measured again tonight as you suggested, before and after cycling.

I don't understand how a 23cm IPP (I double checked the OP note) only gives him 4.75 inches externally. I am dumbfounded, unless they implanted too deep(to the pelvic bone)?  Could that be the cause of the raging hemorrhoids post-op?  I wonder how far into the abdominal cavity the Buck's fascia extends, on average? Unfortunately, I am not finding any answers to my questions online >:( The only thing on Brooks Dilator problems is from 2008 but it's enlightening. I have a million questions here.

https://www.hindawi.com/journals/au/2008/573560/

The only chance of measurements being wrong is from the hospital OP note( same one I emailed you). I quoted what they measured and converted to inches. I don't understand how/why they would do a 13cm Crus capsule, then leaving 11cm externally. I understand the need for stability but that's a heck of a base since it will eventually scar in where ever they place it. (Again, I am assuming from my ortho nursing days) I could be way off here but scar tissue is scar tissue.

Let's look at it this way...IF he were sized properly and a pump malfunction wasn't in question, there should be very little to no loose skin on the shaft when/if he was fully inflated, correct? I understand that after implantation it takes time to reach max size. That's only going to happen with stretching of the Tunica albuginea, which he obviously hasn't been able to do if there is no discomfort.

Going back to your message above-
1. We now know Carrion didn't actually do the IPP
2. I agree, except for the 13cm internally vs 11cm externally?
3. I agree.

BUT

We cannot feel crumpled cylinders after inflation.

However

Given the pump issue and the fact he is nowhere close to an average 23cm IPP length, something is amiss.

Taking all of that into consideration, I think this needs be addressed ASAP because he is scarring in more everyday, making whatever needs to be corrected more involved.

NONE of this makes sense to me but rest assured, I'm going on the 28th to find out!

I'd suggest you contact Jamie Matson at AMS to confirm what was implanted.
I suppose she may have given false information, but I hope not.
Sorry you and your hubs have to deal with this.
I have Jamie's email address if you need it?
Found it, it's:
Jamie.Matson@bsci.com

@tomas1 thank you very much!

We have asked repeatedly for Hub's info card, for his implant, and have not received it yet. I have serial numbers for everything but the pump, from the OP note. I will definitely reach out to Jamie to try and figure this out.

Many thanks.

Quote from: TheBoykinLady on December 21, 2021, 12:28:54 AM
I am dumbfounded, unless they implanted too deep(to the pelvic bone)?  Could that be the cause of the raging hemorrhoids post-op?  I wonder how far into the abdominal cavity the Buck's fascia extends, on average? Unfortunately, I am not finding any answers to my questions online >:( The only thing on Brooks Dilator problems is from 2008 but it's enlightening. I have a million questions here.

https://www.hindawi.com/journals/au/2008/573560/

A couple of points that probably only add to our confusion.  I don't think they have options on how deep they implant the base into the crus.  What they do is measure distally and proximally and add the numbers to determine the length of the implant.  There seems to be no way to reconcile that the implant is not filling the proximal length when the tips are well into the glans.  That cannot happen if he is shorted on cylinder length.  We have to conclude he has a 23 CM implant extending from the crus into his glans.  They could not possibly extend it further.

I can't quite remember, but I believe Jamie emailed the surgical notes to me. The report shows everything done about measuring and the equipment used.

It seems to be a mystery how the implant can go into the glans, but not end up with more length unless something was done wrong, or the wrong implant was used?

Quote from: tomas1 on December 22, 2021, 08:29:16 AM
I can't quite remember, but I believe Jamie emailed the surgical notes to me. The report shows everything done about measuring and the equipment used.

GREAT POINT! 

I might be wrong but it seems Waveboy and TheBoykinLady did get the surgical notes.  It is a fact that the full surgical notes should include the measurements both proximally and distally.  I think it is well worth looking for those numbers.

Hello waveboy again. Thanks Hawk and tomas for the question about surgical notes. I did receive them and yes it is 21 cm with one 2cm RTE, bilaterally.

So, the boykin lady and I went back to the surgeon this past Tuesday. We went over the problems I was having and question's about length and pump issues being compressed. The surgeon stated he had not heard of those issues with the pump and auto filling just on one side. Surgeon said none of those problems added up and he didn't understand. He said none of his patients had had hemorrhoid issues or pudental nerve issues either. He did agree that the pump was high and that was an easy fix. He stated that it would take time for me to get up to full size, like close to a year. He said he made decision to use ams cx 700 due to the implant size. He stated he had both types of implants on the table and the malleable. He chose the 700cx because the LGX, at that length, was not rigid enough inflated and the Titan would be easier given my hemophilia, since the diameter of the cylinders expand and could cause further clotting issues early on.

As for as fixing problems surgeon stated that he wasn't going to go back in to do anything until after couple months to see if issues worked out, seeing as they were not making sense to him. As far as the pump staying compressed he suggested, once I deflate completely to pump 2-3 pumps and leave it alone. Then note if there is anymore bulb compression. As far as one cylinder inflating surgeon said see if it does it with you pumped 2-3 times and that penis always pointing to the right might just be my resting flacid angle. Surgeon ask me if I was cycling twice a day for 1 hour each time and I said I could get the hour at night but not in the am. That was more like 20 minutes. Surgeon said since I was not in pain when fully inflated to inflate at night and leave it inflated til the am and that would maybe help it stretch it more and faster. He stated that 23 cm was more than average and generous. He stated that things would just take time and over that time that I would be able to get more pumps in as it stretches. He ordered a pelvic CT to make sure everything was placed correctly, so I will get that sometime this month. He wanted to follow up in 3 months but the boykin lady will handle that this coming week.

So, I left the office trying to look at the positive side of things and not be aggravated. So thankfully I am not a stomach sleeper. Since I saw the surgeon on Jan 28th each night I have been inflating to max and going to sleep. So on average its been 6-7 hours each night. In the am I deflate and put 2-3 pumps in and go throughout my day. I still get some auto inflate in left cylinder and every 3-4 hours when I go pee I deflate and put 2-3 pumps to get penis positioned where it is not noticeable when I am at work. I cant really say things have made a difference because its only been 5 days. I haven't had any issues of bulb staying compressed until this afternoon after a nap. I had just inflated for about 20 mins then deflated and hit the bulb and it stayed compressed and I started to get mad about it, but after 2 resets on the bulb valve switched and I got 2-3 pumps in. Hoping that it was just a one time thing. The only difference with deflation over the last 5 days was I did it laying down and probably deflated even more. I don't know but I will start keeping chart on that.

Thanks
Til next post
waveboy out!

Waveboy thanks for the thorough update.  I am almost glad to hear the doctor say things were not making sense to him because they definitely are not making sense to me.  I was beginning to question my understanding of this entire process.

I am hoping that the issues with the pump are an issue of some fluke that will work itself out as the pump gets broken in. 

His logic for his choice of implant (whether right or wrong) at least sounds like it has a basis in logic.

I am still utterly baffled by the implant size vs the penis size but maybe you will ultimately be able to get in more pumps as the pump gets broken in.  Maybe then things will start to respond as we would expect with more pumps, a feeling of tightness, and stretching, larger penis measurement.

Question: Have you been able to have intercourse?  If so, any change with PE?  If not, is it because of lack of firm inflation, size, or what?

I am rooting for you and hope you come through this 100% satisfied with the outcome my friend

I'm also wondering about the penis size/implant size variation.
I'm no more than 1/2" different between flaccid and erect.

My surgeon said a similar thing about choice of the CX.
He won't implant the LGX when cylinders are 18CM or greater.

I also wonder why just one cylinder auto-inflates?

Waveboy back again. Thanks for the follow up hawk and tomas.

Tomas about the LGX I still questioned surgeon again but he came back in room and said the walls of the implant on the LGX were not as strong and would end up folding, over time, due to length so I finally accepted that. I'm just left questioning where my length is and will I eventually get it back.

Hawk, I was glad everyone was just as confused as I was. All I can do is follow things along. At least my penis is mostly straight and can be used. Just praying that things will work out. Learning more about where equipment is placed has helped. So, where the cables are attached to the cylinders is right where my scar is infra pubic. I can feel the cables ( I call them cables but the tubes) run down the right side along with the one from the reservoir.

So to your question hawk about intercourse. We tried about 3-4 weeks ago and pump had issues right as we started so that was a wash out. We have had company at our house for last 3 weeks. Hoping after holidays and everyone is gone nexr week, our house hold gets back to normal.It's hard enough to carve out time with a home schooled 13yo.

About the PE who knows i'm just glad it will stay hard afterwards.

I will keep updating as things happen.

waveboy out

I have been reading all this and am also confused.
I have several questions
1. When you pump, are you pumping until you can't handle the pain anymore?
2. How many pumps does it take to pump your penis to maximum? Meaning you can't pump any more because the pump becomes impossible to press.
3. I am not judging, but sex is an important thing to many relationships. Have you thought of scheduling a day and time to have sex?
4. My pump was so tight against my penis, it was difficult to pump at first without pain. Overtime, the pump loosened up and the pain went away. Are you experiencing pain at your penis when you use the pump?
I am truly sorry you are going through this. But hopefully we can get some clarity and help determine what could be a problem.
Best wishes,
StepOne

Hey Stepone.

Yes it is confusing, I am a very observant person. Working in the medical field has made me even more that way. Boykin lady and myself read lots on this forum before my decision and understand what people were going through. So when I had the implant I was running all this through my head of what to expect. When I started cycling I was looking, waiting, and expecting, all things even the dreaded pain.
When the  pump started to act up, I really started taking notes. No one had heard of these things even the doc and the sales rep, or they trying everything to avoid it, saying its the mechanics of the pump or the placements from the surgeons. I don't know. I do know it is happening. I'm not saying people don't believe me. I am hoping once I get it all fixed this will help someone else. If something like this happens to others, I hope they do not accept it and think this is how it is supposed to be. Not wanting anyone to look down on getting a IPP. Yes it sucks that I am going through this and it will get fixed.

Alright then. So stepone as far as your ?s

1. When I pump I feel no pain and haven't since I was released to pump at 6 weeks post-op. I feel cylinders tighten and tips are in 2/3rds of the glands of the penis. Only once have I pumped and felt like I have a really stiff one like I did in my twenties.
2. Number of pumps. I get anywhere from 18 to 25 full pumps (all depends how much auto inflate was in cylinders after deflation) that the bulb is completely compressed. Then the bulb is full and I can't compress it anymore. Sometimes I am able to get another single pump 5-10 minutes later, but then pump solid again. Each time it gets to that point I am pulling down on pump and moving all around to try to get another pump, which was suggested to me by the Boston Scientific rep and surgeon.
3. I know your not judging, sex has always been important in boykin lady and my marriage. Can't schedule it when your job is playing catch up from all the shutdowns from covid, which now has me working 60+ hours a week, especially since I was out for 6 weeks post-op. Then you add on that my pump is still screwing up each time we have tried to have an evening, after you spend 45 mins trying to get pump to work everyone is out of the mood. Holidays, family in from out of state, and a 13yo son that is home schooled. Not much time left in the day until at least next week. Family leaves this weekend....
4.The only pain I feel with the pump is where they placed it too high in my scrotum and the bulb being partially attached to the skin (small area)inside of my scrotum and I can't separate it. Surgeon was NOT concerned about infection after exam last week.

To conclude I know this is confusing as HELL! But these events are happening. Hoping things work out soon. Will have CT of pelvic region within the next 2 weeks.

for now waveboy out

I have a few questions for you guys, if you would indulge me?

Waveboy is super frustrated because none of this is making sense to either of us and he is rather upset lately. Rightly so, may I add.


1. At what point, post-op, could you or your partner NOT feel the tubing just above and beside the penis without really trying?

2. Today was the first time he inflated fully and had any discomfort. It was very mild. Could this finally be the beginning of the "Tunica albugenea rehab" or just an off day? It happened with a normal amount of pumps he said.

3. When he saw Dr. Carrion last, he wanted to wait 3 months to figure out and address all issues at once, if he had to go back to surgery. I understand that due to Waveboy's hemophilia. However, isn't Waveboy sacrificing size and building more scar tissue if he waits that long since there is no discomfort upon inflating? (Aside from today)

4. After 3 months, could you bend your uninflated penis down to urinate? Could this be due to the plaque at the ventral base of his penis though? He had no issues bending pre-op.

5. At this point, he is pretty much inflated all night (every night), at least 2X/ day, and sometimes during a weekend nap. Given this extended time, should erosion be considered and total inflation time be decreased?

6. Is it possible (and I'm reaching here) that the top ventral plaque that was not addressed, is preventing full inflation? The reason I ask is he has limited range of motion trying to urinate. It kind of makes me wonder if it has something to do with his shorter than pre-op anticipated length, given his implant size.

His CT is scheduled for tomorrow so hopefully we'll have some answers to something soon.

Thanks everyone!

I can't answer any of your questions, but I hope you guys get some answers from the scan.

Thanks tomas1.

In answer to question #1, I talked to Dr Eid the other day about the folds on my Titan cylinders when deflated. The folds don't cause pain or any other problem but are noticeable to see and touch. He told me that it could take about a year for the folds to be less noticeable. He said that scar and fatty tissue will form around the cylinders to help smooth things out.

Thanks tshug. 

We've had a few new things lately.

He has what Dr. Carrion now calls a "lazy Left' penis. Un-inflated, his penis leans hard left, to the point he can't stand and pee straight into a toilet. The left cylinder is the one that partially auto-inflates too.

While talking a few days ago, we discovered the left cylinder tip is no longer in the glans, even un-inflated, and is rubbing against the side of his penis.

Both tubes (not cylinders) are about 3/4 inch up the base of his penis, both inflated and not inflated. Sex is not comfortable for me, at all, and we both feel bad about it.

2/4/2022 will be 4 months post-op but from all of Dr. Eid's YouTube vids, he says the tubing shouldn't be palpable.

We were notified today we have to mail the CD from his CT to the doctor. It will likely take about 10 more days to get any answers.

Thanks and have a good weekend!

I guess I have a lazy left penis too. Even before implant surgery and Peyronies mine always leaned a little left and I've always had to hold it and aim while standing to pee. After I got Peyronies it was much worse. Two implants later I still have to hold and aim, but have no Peyronies.

To me the fact that he can feel the tips below the glans is more concerning. That was my case with my first implant. I could feel the right cylinder tip just below the glans and the left tip was even lower leaving me with a droopy head when inflated. I hope you get answers soon and can move on. Good luck...

Also my first surgeon after seeing that he had missized the cylinders insisted that they were the correct size. He wanted to do a plication on the glans to correct it! Thankfully I went to Dr Eid after getting that diagnosis.

tshug thanks. I've read your thread and am so happy you are doing well.

Waveboy's cylinder tips are well into the glans if he is stretched straight. It's confusing. We just don't want him scarring in the "left" position so he is staying inflated longer until we get more information.

Hello everyone.

So here it is March 10th. Here is a quick recap. I had my AMS cx 700 implant done Oct. 4th, 2021. I went 6 weeks post-op before cycling  per surgeon, due to healing from penoplasty.

Dec 28th, 2021 -I followed up with the surgeon after starting to cycle and the pump kept sticking closed, left cylinder auto-filling, pump set too high in scrotum, and I didn't feel or look like I was fully inflated. Surgeon suggested give it 3 to 6 months to work out and swelling to completely resolve. I was very discouraged by that, but agreed.
Tried having sex in Jan and had lose skin moving on the shaft, and the glans was moving around with each push in and out. I had none of these issues when I got a natural erection before Peyronies Disease. Sex was very physically uncomfortable to me. My wife and I tried again in early Feb and she and I both could feel the tubes on side of shaft during sex. It was very uncomfortable and painful for sex for both of us.
Very discouraging and I am very pissed off by this time.

Nothing about this implant is working, pump still gets stuck closed and tubing issues prohibit sex.
So made emergency office visit for this past Monday and told the surgeon it was a complete failure! Surgeon agreed after the visit to schedule a redo on surgery. So now I wait.
I have so many questions and concerns...

Nothing about compensation for more time off work, pain, emotional distress, or the crazy number of trips to Tampa, all while gas goes up by the hour. Unsure of what to do at this point. The first surgery about killed me.

A very discouraged and pissed off man. 5 months post implant failure!

waveboy out

I'm sorry to hear about this. Don't give up and don't quit. Hopefully this can be resolved and fixed. You have endured up to this point and you will get through this! Sounds like you will need another surgery.

Waveboy, sorry to hear this. I fully understand the emotional toll it takes on you, having experienced a failed surgery on my first implant and having a revision done in the same year. Will you have the same surgeon do your revision? If you're thinking about a different surgeon I would highly recommend Dr Eid if not for the surgery at least having a video consult with him before going forward. Dr Eid was not in my healthcare network, but it was well worth the cost having him do my revision.

tshug, I'm not sure about the same surgeon and thanks for all your help. I would love to use Dr. Eid but due to work and vax requirements, I can't do NYC. I just can't.

My first surgery was set to be a titan after the initial consultation but when I received MD orders online, he'd changed from titan to AMS CX. He said this was due to my hemophilia and the girth of the Titan cylinders. If I recall correctly, he was worried they would possibly cause a rupture in the tunica and a bleeding event. However, this was not made during or after any surgery. I want to find the chart comparing them and have to do some digging around here. Given that AMS has an open recall on the MS Pump for certain ones, I'm not entirely comfortable using that implant again. My pump is not on the list and it's sticking closed.

As of right now I am scheduled for revision and new IPP on May 9th with the same surgeon. He is the department head at a teaching University. I think that's part of the problem. 2 residents were also involved in my case and I am pretty sure they are the ones that did the bulk of my surgery. Dr. Carrion just signed off.
When I asked him last week if he would be the one doing this next surgery, he said " I have assistants". I can never get a straight forward answer from him and this also makes me leary.

Wave boy, so sorry about this failure of the doctor to ensure you had a good implant. I would have thought with your condition, you would have received extra care.
I read you are scheduled with the same doctor.
I hope you have a serious talk with them.
Remember you are the customer.
I would call the hospital and ask for help from their Patient Advocacy Board. I am sure that will get things moving and you get the right implant with the right doctor.
StepOne

Tks stepone.
My first plan is to get surgeon on phone and commit that he will be the one taking out, resizing and re-inplant the correct IPP. Along with fully explaining the plication. Is it cutting the shaft open again or just placing 2 stitches to move head of penis back down so it doesn't rock back and forth over tips of cylinders.
This will determine if I stay with this surgeon and if so I will get patient advocacy involved. We will see how tampa general deals with those. The nursing care sucks.

Ok,
We look forward to hearing from you.
They screwed up, not you!
Stay strong!
StepOne

Waveboy and TheBoykinLady, I am distressed by all of this.  I am happy to discuss this by phone but in brief.

You should be able to urinate all over your feet at this point and literally bend your penis double, so the tip is pointed back toward you when deflated.

The tubing should NOT be palpable except with effort.  While I am not a lean guy with six-pack abs, no one would call me overweight.  I am a little over 5'8 and weigh 160, and fit. The likelihood of feeling the tubing increases with extremely lean body mass, a retropubic approach, and rear tip extensions.  No one could accidentally feel my tubing with any amount of vigorous foreplay.

Plaque did not keep you from bending your penis before surgery and should have no bearing on bending it when deflated after surgery.

I think that amount of inflation is probably OK, but it is pushing the envelope.  Typically two hours a day will provide all the positive results you will ever get, and I did less.

7 month recap-

PRO'S- I had no infection and didn't bleed to death.

CON's-
Mentally, I am just sick of the doctor  BS!

I have a 23cm AMS700 implant with a BPL of 11cm or 4.5 inches. I have 13cm proximally and 11 distally per the post-op note. I only weigh 200lbs. Where did they put 13cm and WHY? I can't get any answers.

Post-op, I'm pretty sure I had the worst case of thrombosed hemorrhoids ever doccumented, and I had never had hemorrhoids before this surgery.

My Pump is anterior and still rides very high.

My Pump is still sticking closed on average once every 3-5 days. Sometimes I have to reset multiple times to reach inflation.

Cylinder tips do not extend at least 1/3rd into glans now that swelling has resolved and the left side has created a small spot that is sensitive on the shaft, just below the glans -due to the ever present auto-inflated curve making it deviate from midline.

My penis never hangs in a normal position, even when deflated. 90 degrees is as far South as it will hang.

Sex is possible but definitely NOT pleasurable for either of us due to the 2 tubes being located 3/4 inch up onto shaft. They are very palpable, even when deflated.

Shaft has loose skin while inflated. I am actually not sure I'm fully inflated because the CT reads "possible cylinder kink". After many attempts to get results from Dr., I still don't know his opinion. I can inflate until the bulb will not compress further.

After all swelling resolved~around the 3 month mark, I noticed I had glans instability.

Auto-inflation in left cylinder only. CT does not indicate which side may be kinked.

I have a serious issue with my penis curving to the right when flacid and have to deflate before every urination, and even then it's hard to angle it down to hit a urinal or toilet.

USF is a teaching hospital and I found out through my records that Dr. Carrion wasn't actually the surgeon that did my implant.

I had a sub -coronal approach and still can't wear regular pants. Incision is fine, just still sore.
____________________________________________________________________________________________

Since day 1, I have zero discomfort/ pain upon cycling. This makes me think I am not, and have never been, 100% inflated. I have been cycling at night, leaving myself inflated all night to prevent scar/fibrotic tissue and have no discomfort in the mornings, per MD orders.

Dr. wanted a wait and see approach, even when my pump failed in the office at the 6 week mark.

I reached out to Boston Scientific and the rep contacted me but over the course of a few calls, he stopped communicating. I think he realized the implant had failed.

The last visit, 3/7/22, Dr. agreed a revision was necessary. He scheduled surgery for 5/9/22. I am going tomorrow to Dr. Hakky, in Atlanta GA, for a second opinion. I would prefer not to be a practice dummy again at USF.

Update after tomorrow! Wish me luck please.

Waveboy out.

Waveboy,

You are making the right move.  I would not go back to Dr. Carrion. if you have a choice.  He had his chance and you have no assurance who actually is assisting in the surgery.

You are in our thoughts and prayers.  Please give us a thorough update.  I am following your battle closely.

I was thinking the same thing about staying away from that facility.
Too bad it's impossible to get a mal-practice conviction for these hacks.

I just noticed that carrion means decaying flesh.
Sorry if that crosses lines.

I also have doubts that you got the size implant they said you got.
We'll find out when it's revised.

Waveboy, I hope  your meeting with Dr Hakky went well and he gave you answers to your questions. I definitely would not have Dr Carrion do my revision surgery. Good luck going forward.

Hey Waveboy, hope things are going ok with your second opinion.  I read through your journey notes and I definitely sympathize.  I had my implant around the same time (9/23/21) with Dr Levine in Chicago via subcoronal approach as I too have Peyronies and he did incision and grafting in addition to the implant.  I can tell you from my experience the following

AMS./ Boston Scientific implant was not even an option - Levine states that Coloplast is the only implant that he will use for Peyronies Disease.

I received 20 cm with 2.5 cm RTE - tips are seated well and no glans issues

No loose skin when inflated

I do still have discomfort when fully inflated, can only tolerate about 40 minutes at a time before I must deflate

If you incision is still bothering you I recommend wrapping the area in gauze and using medical tape to secure it, that worked wonders for me to protect the incision area from chafing.

Thats all i can think of for now.  Good luck with Dr Hakky

a couple of other comments

my pump never goes flat or fails to reset

I have no issues with auto inflation

as hawk said, you would have to search to find or feel any of the tubing

as far as size, i dont have measurements from pre-peyronies but i am about 6" erect now, hoping to gain a bit more through cycling.  overall i am happy with my outcome so far, GL with yours

Update from Waveboy's wife

Dr. Hakky was absolutely wonderful. He even apologized to Hubs. He said he felt the whole debacle reflected negatively on all of Carrion's previous residents. You could tell he really meant it. They, Hakky and Carrion, are still really good friends but he understood what the situation was at Tampa General since he spent 4 yrs working under Dr Carrion. He also said that had Carrion done the surgery, we wouldn't have been in his office because he is a fantastic surgeon. Unfortunately, that was not our luck because we got his attending and a resident. I would love to be a fly on the wall when this subject comes up. HIPAA be damned ;D

After the physical exam, Dr.Hakky did an ultrasound to locate the reservoir and confirmed something we'd been suspicious of for a while. Since hub's penis has never hung below 90 degrees, we felt the reservoir was either mal-placed or had become dislodged. Either way, it's likely pressing on the suspensory ligament causing the wrong angle. It's just to the right/over midline, sub-dermal.

His pump is backwards and malfunctions. Dr. Hakky also said he thought there was a kink in the tubing which would also confirm us thinking hubs has never been able to fully inflate(we got to see all of this on ultra sound). Also, he has a cylinder that has kinked/collapsed.
The main thing is, Dr. Hakky doesn't think he was sized correctly. He said the cylinders do not extend into the glans enough and that he shouldn't need glans pexy for floppy glans if he is sized properly.

So, Brent is cautiously optimistic..due to insurance and timing. Hakky is only in the OR one day a week, so surgery is tentatively scheduled for July 5th. That's IF Georgia comes to an agreement with BCBS and our insurance approves his out of network appeal. A lot of 'If's' but hopefully it all works out!

There is an area just above the penis, at the infra-pubic area, that is thickened and firm. He isn't sure what that is but we know it isn't a new plaque, thanks to the ultrasound.
I have to get the CT put on a USB drive and mail it. He didn't have a disk drive in office, so more revelations may come after he has access to that.

The plan is to remove, re-size the corporotomies, and replace with a Titan. The reservoir will likely go above the umbilicus due to hernia mesh and the extended heal time of another supra-pubic incision.. The actual implant approach will be scrotal. It is scheduled for a 3 hr surgery, due to the unknowns.

Hubs will post when he has a chance but I wanted to drop you all note with an update. I really do like Dr. Hakky. Super easy to talk to and I left the office with his cell # and email without having to ask!

Moral of the story is DO NOT allow a teaching hospital to do your implant. Even if it's chaired by a superstar surgeon. You don't know who is actually operating on you!

I am very surprised that he could be so undersized with 23 CM of implant/RTE that the tips do not even reach into the glans much less 1/3 or 1/2 of the way in.  I think his penis would have to be 7" at the very least for that to be true.  It will be mind-numbing if they find that he got misinformation on his implant size on top of everything else.

At this point, we already have
1. Pump installed incorrectly
2. Reservoir placed incorrectly
3. Cylinder twisted
4. Possible kink in the tubing (which I think will be confirmed)

What an outrage.

Everyone should follow her advice and know who is operating on you and if anyone is assisting.

Happy to see that you got the answers you were looking for and that your revision will be done by Dr Hakky! Hopefully your insurance out of network appeal will be approved and you both can put this nightmare behind you.

Thanks for posting "Waveboy's wife".
So sorry he had to go through this! It shows how important two things.
1. A high volume implant surgeon
2. Know who the actual surgeon will be(this is a new requirement for people seeking implants)(the more we know)
I hope and pray that Waveboy is REPAIRED.
StepOne

Good luck Waveboy.  I hope your insurance outcome is different but BCBS of Michigan refused to approve my out of network exception to Dr Levine in Chicago even though I had already had a failed surgery (incision/grafting) at the University of Michigan hospital.  BCBS claims that there are other Drs in MI who could have provided "the same level of care" as Levine, although on this forum and others there are no Michigan doctors mentioned for high level Peyronies care (especially a revision).  I went through all appeals (internal with BCBS, external with the state) to no avail.  I ended up paying a $17k out of network deductible which luckily I am blessed to be able to afford. 

I agree with everyone about making sure the doctor you expect is the one doing your surgery.  I did not know Levine very well (only met with him once before committing to the surgery) but he was the one doing my work with support others, and so far so good.  I like him a lot and recommend him for those in the Midwest. 

I hope for all the best with your revision with Dr Hakky.

Quote from: Hawk on April 14, 2022, 08:31:38 PM
I am very surprised that he could be so undersized with 23 CM of implant/RTE that the tips do not even reach into the glans much less 1/3 or 1/2 of the way in.  I think his penis would have to be 7" at the very least for that to be true.  It will be mind-numbing if they find that he got misinformation on his implant size on top of everything else.

I hate to say it, but I don't trust the size posted. I hope we finally find out, but I wouldn't bet on it.

I am confident we will know the size of the new implant.  That will tell us the size of this one.

Waveboy,


So sorry to hear about all of your troubles, but I can say unequivocally that you are in great hands with Dr Hakky. He does a lot of revisions, he'll get things sorted out!

Quote from: Hawk on April 15, 2022, 08:23:13 PM
I am confident we will know the size of the new implant.  That will tell us the size of this one.

, OR maybe not.  I am beginning to wonder.  They could have shorted him and misreported the implant or crimped, twisted, and folded the cylinders on one that was too long and that's part of why it won't work.  He can only guess until he has the revision and gets an honest report.

This is so troubling!
The more I read, the more furious I become.
I have had a few bad doctors that caused me harm, but even though I had a attorney friend that said he would sue with no cost to me, but I just wanted to find a new surgeon.
In retrospect I should have sued, even the new surgeon said the previous surgeon did harm.
But I do understand.
Be safe and choose wisely.
StepOne

Thanks to everyone about your concerns and shared emotions and support. It's really tough emotionally and draining with all of it. I haven't been posting due to before Dr. Hakky office visit I kept getting responses of "I don't know why it is doing that and give it time it will work out" or diversion of a question of explain the measurement difference and to end it all taking CT with them and the saying we will be right back with results and never come back!

I really want to post something positive about getting this IPP! But I haven't had any positive things happen!

So now we wait on insurance yet again. I know others have posted to get it fixed outside from insurance, but my situation is a little different not just the in office/ same day surgery. Mine adds up with hospital stays, with all my injections for my hemophilia. Yes by the end I would have a brand new full size truck loaded! OK that is some of my humor that I have left over. I'm trying to hold on to something. Yes my body I will not put a price on! I just keep praying insurance works out and Dr. Hakky is able to fix what others screwed up!

So between Boykin lady and myself we will try to keep everyone updated.

Until then Keep yours up because I can't with mine right now!  :o

waveboy out!

Hi everyone! It's been a minute.. First, allow me to send our condolences to Old Man on the loss of his wife.
Second, we have been super busy with life and trying NOT to concentrate on the botched surgery result from USF Tampa. We also didn't want to post the update from the visit with Dr. Hakky and mess up a future revision if word got back to Dr. Carrion we were unhappy. Carrion is Hakky's mentor.
That brings me here today.
We, Waveboy and I, are in Atlanta for revision surgery in the morning 7/18/22👏👏. Dr. Hakky's plan is to remove the AMS CX and replace with a Titan and do whatever needs to be done. General surgery is on standby. Waveboy will have to be admitted today and stay through Thursday, at least, due to his hemophilia.
We will update as things progress and we hope everyone is well!
Wish us luck and say a prayer, if you would.

I wish you guys the best and hope all goes well with waveboys revision goes well! It was a huge coincidence that last night I stumbled upon this thread and was reading through the story of the first surgery haha, then today we get the revision!

Anyways, let us know how it goes after the surgery takes place and hopefully everything goes to plan.

Prayers to both of you that everything goes well with the revision.

tShug and everyone else, thank you for the prayers. I'm doing a short post from my phone to let everyone know the surgery went great and he is set to be discharged tomorrow. The only reason we had to stay was the hemophilia meds. Dr. Hakky is an amazing surgeon! I will post all of the details when we get back home, probably over the weekend.

It is so nice to see a supportive wife. Amazing really. Nice to know that this went well! Fingers crossed for him. I also spoke once with Dr Hakky on a video appointment and I was pleased with his attitude and kindness.

5 days post op

To answer some questions-
Waveboy really had an AMS 700 CX 21cm w 1 RTE. That was confirmed at ex-plant. It was also confirmed, due to the tubing kinks and mal-placement of the reservoir, he was never able to fully inflate. The AMS reservoir had migrated from right of midline, subcutaneous placement, to midline and was resting on the neuro-vascular bundle and was  putting tension on the suspensory ligament. Pump was still too high and malfunctioning.

New equipment=New man
He came home with a Titan XL 24cm implant(scrotal incision) and a minor umbilical cord skin graft(2-3cm) dorsal midline. The graft is the patch where the old reservoir was removed. He had been pumping before surgery.

First shower was today. Discharge orders to pull on pump now. No pumping until 7 days post op. Follow up is 8/3 so we go back to ATL.

Dr. Hakky-
He is a class A surgeon and the hospital where Waveboy had his surgery is top notch. After surgery, he showed me pics of the old implant(post removal), the new implant(after placement and fully inflated) and explained that the resident that did the original implant didn't even try to get it right. After 3 days at Northside Gwinette Hospital, we experienced NO bad nurses! I can not get over the 180 degree difference from USF Tampa. Drain was out day 3, hematology was terrific, and bandages off day 3 post-op.

Major improvements-
He is recovering faster, can't feel any tubing, and minimal bruising! Dr. Hakky was even able to place the reservoir behind the inguinal ring, thanks to a great hernia surgeon years ago. He left a small hole in the mesh, just in case he needed further abdominal surgery. This is how Dr. Hakky was able to implant the reservoir.
I can't wait for @Hawk to read this update and get his response.
Thanks for all of the prayers everyone.

This is awesome news and a great report!!

Great to see you both hang in there - can't wait to see the update!

Thank you for journaling all of this. It's valuable informtion for all of us.

J

That's all great news! After having gone through a bad first implant myself and having a successful revision it does show that having a top notch surgeon does make a difference in this type of surgery. Best of luck with the rest of the recovery.

Very nice to hear. I wish your man a speedy recovery and even better results ahead!

I have read the updates, and I am ecstatic.  I am slow in my written response because I have spoken to Waveboy a few times on the phone but the forum deserves details posted here.

I have to confess that Waveboy and TheBoykinLady hold a special place in my heart.  They had so much to overcome with prior hernia surgery, Peyronies Disease, PE, ED, and most complicated of all, hemophilia.  To then experience a totally botched surgery and all the resulting problems and complications was enough to make me go crazy just hearing it.  I really cannot even get my head around how they have dealt with it and pressed ahead as they have. They are an outstanding team and forum superheroes, in my opinion.  There is a MORE THAN ONE HUGE LESSON HERE FOR ALL OF US.

I hope both of you will keep the forum updated with detailed reports.  This will be the goto-journal for those feeling there is no hope in their moments of discourgement.

Hello everyone! Waveboy here!

REVISION -AMS CX700 21cm with 1 RTE x2 to a Titan XL 24cm with no RTE X2

To start off with, I want to apologize for not getting on the forum for couple weeks! I sure has been a journey! Emotions all over the place. The 2nd go around was far better than the first! I just had the fear in the back of my mind that something was gonna go wrong! Now it has been 6 weeks post 2nd implant and I'm doing fantastic!

My hat's off and many praises to my surgeon Dr. Tariq Hakky out of Atlanta GA @ Atlanta Cosmetic Urology. I can't say enough great things about him. He spent plenty of time with me in office visits and knew just how to fix the screw ups from other surgeons (Residents) from Tampa general. I recommend Dr. Hakky to anyone out there for both consultation and/or surgery. He is very personable and extremely thorough. and it is just He is the only physician in his office so no worries about others.  He explains everything he will be doing thoroughly and what to expect in each week recovery! I do feel I should warn you. He does not mince words and he definitely uses common terms. You have a dick, balls, and a hard on. Don't be offended, it's just his demeanor.

From the first visit Dr. Hakky looked at me and said, "What the hell is that and why did they put it there and why did they take that approach and why that equipment?!?". He was very animated, shocked, and blunt. I welcomed the change of pace and honesty, at this juncture. He was also super sympathetic and said he could fix it all and hated that I had gone through what I did. He said he places a lot of implants but he also fixes a lot of others screw ups! He limits his patient load because he takes pride in what he does and cares about his patients. He said if gets to busy to take care of his patient's he will stop taking new referrals until he gets caught up! I really liked his mindset! He also gives you his email. as this is his preferred method of contact for post op. I work in the medical field and I know the difference in being just a number and being a person. Dr. Hakky knows  what he is doing and is one of the best at it, IMHO. He does around 150-200 implants a year depending on his patient load. Also, he only does cosmetic and reproductive urology. You don't have to worry about the average urology patient in the waiting room taking up appointment time or his attention to in-depth detail.

So, I am at week six and going back to work tomorrow.

Week one I was in the hospital for first 3 days for caution of my Hemophilia. Everything went awesome! Northside Hospital and the nurses were ALL top notch. Very hard to find that level of care and no contract nurses in our post Covid world. He did a scrotal approach and moved my reservoir behind my hernia mesh, where he said it should have been placed to begin with. They unwrapped me before I left the hospital and I was peeing on my own!!!!! No more compression bandage or JP drain. By day 2, I was up walking from one room to the next and sitting up straight! Unable to do that for 3 weeks after the last surgery. Let'a talk local anesthesia. The man fills you up and you feel nothing but mild pressure for 72 hours. After day 3, mild pressure with ice and occasional pain pill. Tylenol and ice usually did the trick unless I was on my feet a lot or traveling between follow up appointments.I was eating real meals after 1st day of surgery which took 2 weeks last time! One of the most exciting parts was NO hemorrhoid flaring up!

Week 2
Still not able to cycle until week 3 due to hemophilia, but that's ok. I was eating good and was able to get off pain meds! Not having to do in and out catheters is a great thing. Still sitting to pee because I cant push it down while standing, but again that's ok, because I can pee on my own since day 3 post op. I was up moving more and more each day and I could put regular baggy XL shorts on, with no underwear because I was still 30% inflated.  No incision at my waist anymore! Thank GOD! I was driving around our neighborhood because I had to do a 3 week follow up with Dr. Hakky in Atlanta. 6 hour drive and TheBoykinLady had to stay with our son.

Week 3
Went up for follow up and was able to drive up there by myself. Just mild discomfort where pump sitting otherwise good going up. When I got to docs office the ultrasound showed I had small blood clot just below left testicle, right at the ball of the pump and pump had turned a little. The release valve was by the clot and the testicle. He inflated me some and then deflated me to see that things were working. Then he wanted me to do it. I showed him I could inflate some and he was happy with that. Then he ask me to deflate and inflate couple times while he saw other patients. Well, I spent 30 mins working on finding the deflate button and my scrotum was still really swollen from the hematoma. I worked up a sweat and still couldn't find the damn button. Doc came in and got me to stop and deflated me down, which hurt like hell! He said it would with the swelling and blood clot and testicle right there.
He gave me a steroid shot for the swelling and wanted me back to following week to check on the blood clot and see how I was doing cycling. Not gonna lie that 6 hour drive home sucked!. To end this week on a good note the swelling went down and I was able to find the button and deflated on my own 2 days later! Thanks to Hawk for the phone a friend helpline! I was sooooo excited I texted Dr. Hakky and he responded back within an hour "So happy for you and you made my whole week"!

Week 4
Well another 7 days of cycling on my own has been great for me physically and mentally! Went back for another follow up and Doctor said blood clot in scrotum was gone! Things were calmed down a lot from the swelling before. Doc said still no baths just showers til week 6. No sex til week 5. I was ok with all of it because I was up moving around, driving and cycling my implant on my own! It was so hard not to have the bad thoughts in my mind of wondering whens the bad gonna happen! Every little good news to most people was great news to TheBokinLady and I.

Week 5
This was the week! I felt like it was the first date with my wife! Then the nervousness kicked in and we both were like oh damn, we need to think this through first! I was thinking, in the back of my mind, this is gonna hurt!
Guess what? It didn't!  :o The rest is between TheBoykinLady and I! hmmmmm

Week 6.
The dreadful week of having to go back to work!

Again, I am sorry I didn't get on the forum sooner than I did. I hope no one else will ever have to go through what I had to. I want to give extra thanks again to Dr. Tariq Hakky and most definitely to my wife TheBoykinLady. Thank you Hawk for the phone chats and support, and the support from this forum!

I am an open book. Ask away!

Thanks so much for that great post, and CONGRATULATIONS!  Your journal is a real asset to the forum.

My questions:

1.  When fully inflated, do you develop significant discomfort from stretching?

2. How does your length and girth now compare with:
  A. Size Pre- Peyronies Disease
  B. Size just before the first surgery
  C. Size Just Before the 2nd surgery

3.  We obviously, do not want intimate details of your sex life, but I am interested in whether it was painfully distracting or complete success or some mix.

4.  You previously posted about a Dx of PE.  Have you noticed any impact on your PE.  I am very interested in whether your lack of worry about Erectile Dysfunction will enable you to relearn and get out of
     the "hurry-up" mode.  As Merrix indicated in his journal, I suspect your sex life will evolve for many months since a proper functioning implant will allow both of you to relax and grow. (physically and
     psychologically). 
  A.  Is ejaculation delayed?
  B.  Does the fact that you know you can always maintain an erection have any psychological impact?

Respectfully,

Hawk

Congratulations Waveboy! Very happy to hear that your revision went well and that your recovery is much easier this time. It's also great that you and your wife can finally put the nightmare of your first surgery behind you and can move on with your lives now.

Hello again.
I know Hawk has ask some questions. I will answer some. Bare with me, I am working on my 2nd day back to work with only 8 Hours sleep in the last 3 days.

So question 4 about PE or the "hurry up mentality" will take a little bit of time because it has only been a week and we/I have to settle down from not having sex for over 6 months due to previous IPP was placed wrong, and tubes rested high up the penis shaft which hurt my wife and very uncomfortable to me. So really no answer to that question at the time. Mentally I feel it will be great knowing I will stay erect until I want it to go down!
Ejaculation issues I can't determine just yet. I dont know if it is because they put me on Flomax for bladder retention and that is a side effect of Flomax or if it is just me. I don't know.

Question 1 about fully inflated.
Im at week 6 and the doctor's rules are to pump it with just one hand until unable to pump. Dont start with 2 hands or really forcing until week 7 Shaft is stiff but not uncomfortable. Comparision to first implant penis is fuller and longer just at week 6. Only feel on tube going to the reservoir and it is all the way back against pubic bone!

Question 2
lets see A. size before peyronies I was 6.5 inches bone press. 5.5 inches girth on a good day outside Erectile Dysfunction.
             B. before 1st surgery with Peyronies. 4.5 hard with curve. girth hard to tell with bulge opposite curve.
             C  3 month post 1st surgery infrapubic. Max pump 4.5 inches without a curve with 2 tubes resting 1 inch up shaft on right side.
                 girth 4 inches. AMS 700 cx doesnt grow in length, just girth. Is what surgeon told me.
             D. 6 weeks post revision Titan XL. As of right now max pumped is 5.25 inches on length and 5.25 inches on girth.

So as of 6 weeks post-op I am having no pain and there is no pain to my wife ( yes I am not back to pre-Peyronies but I am damn happy that I am back in the game and each day getting closer to where I was!

sorry for any misspelling

Waveboy out!

Waveboy, I'm glad things are going much better this time around.
One question I have is you mentioned Flomax possibly causing ejac problems?
I take Tamsulosin which is FM generic and I only have retrograde ejaculation.
It's not a problem at my age, but it does make me wonder.

Just to update from previous post. 1st implant with AMS was above the penis at pubic bone. 2nd surgery the revision with Titan was done scrotal.

Hey tomas1 and yes im on the generic and I just couldn't answer Hawk's previous question on the ejaculation issue because they started me on that meds. I just didn't want to give a wrong answer.

Hello everyone. Here is my update.

I am at week 8 post op revision surgery with titan and a scrotal incision.

So at 6 week mark I went back to work so my cycling went from twice a day to once a day in the evenings. At the 6 week mark surgeon said I could use two hands with pumping to force more in. So each time I inflated I pumped as much as I could and penis would get hard but not to the point of DAMN that's uncomfortable like others had posted it would be. But I wasn't arguing because I had a straight penis. At the 7 week mark surgeon said I could use a VED to stretch penis more if I wanted to so I dove right in. Once VED on and started putting pressure the device started pushing on the scrotal incision and pushing on the tube that supplied fluid from the reservoir to the pump and that didn't feel good so I stopped VED immediately! Then found out that with the titan using a VED could damage that tube so I decided no more on VED. I went back to cycling once a day 20 mins.

Now I am at week 8, and I just started a cycling tonight. At the 20 min mark I double handed squeezed bulb and got 2 more pumps in. Waited 10 mins and squeezed 1 1/2 pumps in and for the first time I felt the DAMN that's hard and uncomfortable in both girth and length like I had read about and was told about so I kept that pressure on for 20 min which was the first time through all of this was excited to press the release valve! In addition I was excited that I made it to another milestone! So now I know what to feel for each cycle and to go longer than 20 mins.

Just wanted to give a good update because I know there are others like me that need to know some of us it takes a little longer for things to work out and don't give up!

waveboy out!!

Great report and thanks.
I am confused that the surgeon said to use a VED on your implant.
Maybe I missed something but I have never heard of using a VED with an implant.
Do you think some sharing with the surgeon might be a good thing?
So glad you are feeling the pain, lol
Big hugs
StepOne

A minority of surgeons do advise using a VED for size gains.  Dr. Eid specifically gave me permission to use the VED if I wanted to for more glans engorgement and since I have a different VED system (Vacurect).  I tried it a couple of times but it adds nothing of value.

Thanks for the update.

Seeing as you had both pubic and scrotal - can you comment on which method you prefer ?

J

So the VED was just an option from my surgeon. He had me use it 6 weeks pre revision to gain some of my length. Again he said it was an option if I wanted to use it.


Hey jj21. So I'm sure some others have had a pubic approach and it worked for them, but the place that did mine screwed it up! Not only did they cut me at base of penis to place cylinders and pump, but the went mid pubic where I had a mole at and cut it off without asking and placed resevior there on top of my mesh fixing hernia. Some of the tubing was bent and placed behind incision at base of penis incision which put pressure on the tendon running up your penis which kept penis from become fully erect. Couldn't wear regular pants or underwear. Now revision was done scrotal and all of those things were corrected and scars healing better. So my opinion clearly is a scrotal approach!
sorry if to much detail or to much attitude in that statement but it is what happened to me, clearly it shouldn't happen to anyone else!

waveboy out!

Waveboy - I really appreciate you coming back here and telling your journey to help others.

I'm set for an implant at the end of this year, I also have hernia meshes on both sides, and my surgeon does both pubic and scrotal. So, your info is really helpful.

Very glad you overcame all this and also after a botched surgery too!

Wishing you the best!

J

hey jj

yes about the hernia mesh. My revision they moved the resiviour from layed on mesh which could have pulled it down and created another hernia. So Dr. Hakky placed it in my abdominal wall beside belly button. Plus you can't see or feel it there compared to where they placed it on top of mesh it was visible and layed right behind where the pants buttoned. I would suggest scrotal approach because surgeon only has to guide one tube over the mesh not all three, plus only one tube runs beside the shaft of the penis.

Make sure you clarify with the surgeon and make sure the surgeon is the only one doing it and not the residents.

If any other questions feel free to ask.

waveboy out

So for some small but exciting news.
I was able to put on and wear regular pants today which buttoned and zipped closed and I didn't hurt! I finally healed from 1st surgery where they went pubic and screwed placement of reseviour  on top of my mesh and 2nd incision right at where I button my pants! It's only been a year later and a revision later!
Anyway I was excited!. No more sweatpants or scrub pants just to go out in public. Another stepping stone to being normal again!

waveboy out!

Waveboy,
Congratulations!
I am so happy you made it through this struggle and that you shared it with us.
Enjoy
StepOne

Waveboy,  I hope life is treat you and your wife well.  I know life goes on, but I miss your updates.

1. What is your view of implants in general?

2. Generally, how does sex compare with your very best years before implant?

3. Have you regained any length compared to what you were right before your 1st surgery?

4. Has this had any effect (positive or negative) on your PE?

Hello everyone and hello Hawk!

Sorry, it has been 5 months since I have been on the forum. Life got in the way at the 3-month mark post 2nd IPP surgery. Between my wife going through menopause and then having surgery then, I started man-a-pause! Testosterone dropped, energy dropped, drive dropped, and depression started. So not much trial with the IPP.
 Hawk, you ask a couple of questions one was about PE after IPP, but I can't answer that one just yet until life settles down at my house.

Next question you ask about size. Peyronies took 1.5  inches away from me. Then 1st IPP surgeon messed me up badlywho in Tampa, Florida Dr. Carrion who didn't do the surgery himself but let the residents do it, and I lost another 1/2 inch by sizing wrong with the wrong placement of pump and reservoir tacked onto my mesh for hernia which was pulling mesh down. Then I went to 2nd surgeon in Atlanta GA Dr. Tariq Hakky who was amazing with his surgery of fixing placements and sizing correctly! He was great with his bedside manner and very educational before and after surgery about what to expect. So now at 8 months post surgery, I am back to my full girth before Peyronies and I am 3/4 inch from my original length before Peyronies. No curve, straight, and hard when I need to be!

First question, what is my overall opinion of implants? So I started with peyronies and was told if I fixed Peyronies with shots in my penis that curve would come back just give it time. Plus I am a hemophiliac so shots options were out. I had too much of a curve to have sex without it hurting me and hurting my wife, so my only option was either no sex or go with IPP. Very stressed in the beginning and thought I was losing my manhood, to be honest. The first surgeon screwed me up, which made things worse about opinions. Then Dr. Hakky came along and fixed it right making things MUCH better to where sex was back on the table and no curve with a hard-on the was controlled by a pump! My opinion gets better and better by each month, then better by each week. I will not lie it is an adjustment of placement of your penis when deflated and then the pump. My wife and I nicknamed it my key fob. Originally, I told my wife it was a roommate that my testicles were like 3 is a crowd. So I changed it to key fob. Everything was an adjustment but things getting better faster than I thought. So my opinion is a very high one to IPP and its a great opinion.

If I can help even one person out with concerns about an IPP with my story, that means a lot. This forum has been a great help to my wife and I with education.

I will try to be better at getting back on the forum more often. My life is starting to straighten out again.

Happy Friday, everyone.

Waveboy out!

Thanks for the update!
You are so right, about every month getting better.
I am so happy for you that you are on the road to recovery from a long journey.
Everyone says it is no sprint, but a very long trip to sexual recovery.
Stay well and stay in touch.
StepOne

waveboy here!

about 10 months post 2nd IPP surgery. Doing much better! Feeling back to normal and more days better than!
Hawk to answer your last ? of if the PE is better. So far no it is not. The plus part of it is I have a IPP so even if my PE kicks in I'm still straight and hard until I say it goes down!!!! Some days I'm like DAMN I needed this thing all along!

Yes it has been a long year and a half but it is well worth it! Thank you again Dr. Tariq Hakky out of atlanta GA for fixing my IPP from the screw up Tampa FL did on me!
Thank you for this forum (Hawk, Pfract, stepone and all the others that supported and educated my wife and I).

Been a great month!

Waveboy out!