Cylinder out of Corpora

[CHIEF3]

To all of us, I wish you good health.
As for me, I am 9 months into my first replacement. After 9 years my first implant failed to inflate. I had the AMS and replaced it with a Titan hoping for better strength and girth. I had a very good recovery compared with the first surgery. At 7 weeks we began to use it and had good success. However, there was noticeable loss of length. Recently, I started to have some pain at the tip and rectum. My wife also noticed a loss of sensation and firmness. I also noticed my right cylinder protruding past the left at the tip which was not visible for the first 8 months after the replacement. Back to my doctor for an exam. He said it looked good and cylinders are inflated and hard. So he scheduled a CT scan to see more details of the back end. Him and his colleague are sure that the right cylinder is not in the correct position (at the deepest end as seen on the CT scan). He can’t tell if it’s protruding or along side of the Corpora. I’m now scheduled for another surgery either repair or full replacement. He first plans to enter infrapubic (top) at the original insertion. He will try to place correctly and add sutures where the cylinder sits (not to the cylinder). If unable to see or access he will enter from intrascrotal. Last resort is a full replacement. My doctor thinks this is as concerning to infection as a full replacement. If replacement is needed, he feels the AMS is a lower risk for infection due to its surface coating. Please comment. Has anyone else had a cylinder move and or replaced?

As for anyone with pain or change in cylinder position, I recommend asking your doctor for a CT scan.

Godspeed on your journey.

[newbie443]

To all of us, I wish you good health.
As for me, I am 9 months into my first replacement. After 9 years my first implant failed to inflate. I had the AMS and replaced it with a Titan hoping for better strength and girth. I had a very good recovery compared with the first surgery. At 7 weeks we began to use it and had good success. However, there was noticeable loss of length. Recently, I started to have some pain at the tip and rectum. My wife also noticed a loss of sensation and firmness. I also noticed my right cylinder protruding past the left at the tip which was not visible for the first 8 months after the replacement. Back to my doctor for an exam. He said it looked good and cylinders are inflated and hard. So he scheduled a CT scan to see more details of the back end. Him and his colleague are sure that the right cylinder is not in the correct position (at the deepest end as seen on the CT scan). He can’t tell if it’s protruding or along side of the Corpora. I’m now scheduled for another surgery either repair or full replacement. He first plans to enter infrapubic (top) at the original insertion. He will try to place correctly and add sutures where the cylinder sits (not to the cylinder). If unable to see or access he will enter from intrascrotal. Last resort is a full replacement. My doctor thinks this is as concerning to infection as a full replacement. If replacement is needed, he feels the AMS is a lower risk for infection due to its surface coating. Please comment. Has anyone else had a cylinder move and or replaced?

As for anyone with pain or change in cylinder position, I recommend asking your doctor for a CT scan.

Godspeed on your journey.

My local doctors do not do repairs or replacements. They just remove the device if you can't live with the results. I was told by the groups business office this was not a rare occurrence. I pointed hard left from the time I woke up from surgery and my original doctor was of very little help and refused to see me for other problems I was having. And local doctors were of no help. I had pain in the proximal end of my cylinders at my rectum that would last for days after sex. I was able to go to my gastro doctor to get a CT scan that showed the cylinder tip (RTE end) displacement. Even then I had trouble with my uro sending me to a place to get it fixed. I am in KS and TX was tried but they would not accept my insurance. No one was forth coming and notified me of this and it was weeks finding out. Tried Georgia with even worse results. Finally was tols to go to KS City. Had known about that doctor for a while and was a decent doctor but not really world class. Much better though than my local group of doctors. Before the CT scan I had used my fingers to trace the right and left cylinders back above my scrotum to the location of my pain. I found the tight cylinder was deeper and more difficult to follow and my right cylinder was close to the skin and easier to follow. The KCK doctor that did the repair was at KU med school and said the only reason he was taking my case was as a teaching case for his students. He had me examined by several others to have them follow the cylinders back and feel the difference. You can do a web search for proximal perforation sling repair to find what was done in my surgery. Helped me about 50%. My left angle is about 50% better and my pain is about 50% better. Trying to post the CT scan image that shows the different locations.

download/file.php?id=10937

[CHIEF3]

Thanks newbie443 for your testimony.
This is a quick review and update:
In 2013 I had my first implant (AMS) by Dr. Karpman in Los Gatos, Ca. It worked very good for about seven years and then the pump began getting stuck. When it finally broke, I went back to Dr. Karpman for a consultation and quote. He recommended a replacement with the Titan. By this time I had already changed my insurance to Kaiser. It would be over $30k out of my pocket to stay with Dr Karpman. Anyway, I decided to take a chance with KP. They did not schedule me for three months. This was probably the worst thing for me. After my replacement surgery (9/1/22), my doctor said there was a lot of scar tissue in the area but everything came out good and went back into the same area. I should add, the doctor wanted to replace it with the same kind (AMS) based on his concerns with possible infection and the AMS having an antibacterial coating. Nonetheless, I insisted on the Titan, hoping for larger girth and longer life. Recovery was surprisingly very easy. I had little pain and thankfully no infection. My wife and I started to use it again at 7 weeks. It worked good but felt it had lost length. For seven months it was working fine, then something happened. I was feeling some pain and pressure in the rear and my wife was not feeling the same stimulation. Back to the doctor and after a CT scan, he believes the right cylinder was not in the Corpora. On 6/14/23, I went back into surgery for a repair or replacement. It turns out he did a sling repair on the right cylinder. Recovery was ok, no infection but I still have some pain on my right side in the scrotum and pelvis. And the worst part is my wife is still not feeling stimulated. She feels like it’s softer than before the repair. I’m pumping about 30 times until it’s rock hard and I can’t pump more. Next week I will visit Dr Karpman again and probably get scolded for going to KP. If I could undo it and $$ was not an issue. But I question, is it what the doctor did? Could it be the Titan? Could this happen with any other doctor? This has taken a big hit on our marriage and I am worried it can’t be fixed. Your comments and prayers are appreciated.

[newbie443]

I had the same problem with being able to afford an out of pocket 2nd surgery. And as I explained insurance was not wanting to pay for the first surgery for anyone other than local low volume doctors that had bad results and did not do repairs. And my original doctor was having trouble moving to another Uro group and then months later leaving there and being out of country for over a year and then no in USA location when he returned for a period of time. As I said my sling repair helped about 50%. Seems like this is about where you are at. The problem with proximal perforation is access to the area. Distal perforation has easier access. When I was researching this I found and document that lauded the sling repair as an option to cases previously classified as game over. I cannot find that document now for a date on when this was. My original doctor had a lot of videos on line and I did see one where he was doing a reoperation on a man he did surgery on that had an infection and a proximal perforation. He had to remove everything and wash out and did not put anything back in. As my insurance did not want to pay for a device my original left cylinder was removed and then put back in with the sling. So I had no components replaced. When the Titan first came out and had the coating that permitted a doctor to use different antibiotic solutions the preferred solution did have a higher infection rate than the AMS coating. A new solution was introduced at some point and that coating has the same or even very slightly lower infection rate. I would guess that the reason your KR doctor was wanting to use a AMS (maybe a LGX) would be because of the devices ability to expand more than the Titan. That was most likely the reason for some of your size loss. No need to worry about infection rate with either though as they are identical. Contact the place you had your surgery and request your doctors surgical notes. That will tell you what was done.

What I am trying to say is things happen with every doctor. I am not sure how much better you will be able to improve this. I am at the point where another surgery is going to be really hard on me. So I focus on the fact that I am now able to have an erection and I have that part of my life back. No it is not the perfect results that I paid out of pocket for. But it works. I had nothing before. Only VED would give me an erection and I never tried it with constriction ring so I don't know if even that would have worked. So compared to the nothing I had before what I have now is pretty good. And you and I avoided infection unlike the man in the video I described above.

When I was trying to decide on using my BCBS insurance for the repair to be done at KU Medical Center or wait for Medicare and going to a big name doctor I did consults with several other doctors. As you and I have sling repairs if we have replacement surgery the doctor will need to find the sling suture and remove it. This makes it more difficult and even more so with a doctor who did not place the suture. Just letting you know ahead of time.

If you'd like to talk send me a PM and I will get you my phone number and we can work out a time.

[aussiePeyronies]

I really feel for you guys, I am 34 and in a similar position. Chronic pain, pain after ejaculation, pain at the frenulum, backfill, one cylinder doesn't inflate as much as the other (surgeon says it's due to graft thickening/retracting), but it looks/feels like it's displaced?

Unfortunately, unless you can afford one of the top docs, you're very limited. If you live in an overseas country, even more.

You guys are in the U.S.A, I would not take any risks. Save up (or get finance) and go to Eid, Hakky or Clavell. Alternatively, try a payment plan.

If something goes wrong, the consequences can be disastrous and lifelong. You could be living with it for the next 20-30 years.

Newbie - I think you're right, when there's issues in the proximal part, it can require mobilization of the neurovascular bundle and poses risk of damage to the glans. If something goes wrong, sometimes, the risks are not worth the revision.

I am in the process of possibly trying to save 50k Australian (31k USD) and seeing if it's worth going to Hakky or Eid for a revision. Otherwise I just have to accept the chronic pain and give up a sex life due to pain after ejaculation. Very difficult to accept at 34 years old after 5 years of peyronies. But, hey, that's the risk we take when we opt for this surgery.

J

[CHIEF3]

Here is a sad update to my saga. Just to recap: 1) first implant (AMS) in 2013. 2) pump failure, revised (Titan) in Sept. 2022. 3) difficult with sex and CT Scan reveled right proximal end out of Corpora at anal canal. It felt like I had turd that would never come out. "Repair" attempted in June 2023 with a sling (it did nothing). 4) Changed doctors, new insurance, revision (Titan) pump and cylinders only replace Feb. 2024. So what could go wrong? Now the turd is gone but I can feel the tip at the crease of my right butt cheek and leg. Will it erode? Will I be able to have sex without pain? Will I be able to have a firm enough erection? I am hoping it will heal in place. I can live with it right now but I am six weeks away from even trying it. I am trying to get another CT Scan referral. Has anyone been able to feel your cylinder tips and still have good sex?

All the best.