Revision at 6 months, possible cylinder herniation or erosion

[BlueSky16]

Hi all, I'm in my 30's and six months out from getting a coloplast. I'm probably going to need a revision and honestly I'm disappointed and a little down. If someone has been in a similar situation, can you talk me through it?
My device actually functions okay and I don't have any pain. But I developed a kink on one of the cylinders when deflated-goes away with inflation. My sergeon thought it might be a slight herniation of the device and asked me to stop using it. Now the MRI mentions irregular outward contour and kinking and possible erosion beyond the corpora.
I found the initial procedure personally quite difficult. And I imagine I'll have to do many of the same things again - take time off work, avoid fitness and swimming, possibly cancel upcoming vacations and plans, possibly hire a medical escort again because of the anesthesia. And I really, really don't want to do these things. I thought I was done, I thought I was free. It's not something I wanted to go through again for several years.
Overall I was just starting to get comfortable and familiar with the device, though there have been some unexpected quirks:
-I've lost a lot of sensation on the underside of the shaft near the incision. perhaps this is starting to get a little better, but I'm still terrified of being cut there again. I try not to think about this too much because there's nothing I can realistically do about it.
-I have tubing around the base and wires above the pump/deflate button that I didn't expect. It's not much of a problem, but it makes putting on a condom awkward (difficult to roll down past the tubing for a firm fit and starts to roll back up)

Has anyone been in a similar situation with a revision and had everything work out just fine? Really hoping this will end up being just a minor speedbump in the healing process and not a harbinger
of worse things to come.

[Johnny516]

Who was your surgeon? If you have to get a revision I think you should definitely look into going to a high-volume surgeon.

[easymoney]

Have you considered a MPP instead of a IPP? Look up a member called thedriver had 4 failed IPP's had to almost force his dr to put in a MPP .. went with genesis ..has had it over a year and from his postings he and his wife work hard at trying to break it he is in his 50's .. I have a Rigicon MPP for the past 2 years if I can answer any questions for you ..

[lenders]

If it works and you have not pain why revision? Even more, if the kink goes away when inflated I dont see the point.

[Kodixx]

BlueSky16, when you say "kink", is that like a dogear ? I ask because you said that it goes away when inflated, and that's similar to a dogear. Also, it seems like if there was a problem, or something was bulging and at risk of failing, it would show up more when inflated and under pressure. If the problem is only there when deflated, that seems less likely to fail because of the lack of pressure.

- Chuck

My device actually functions okay and I don't have any pain. But I developed a kink on one of the cylinders when deflated-goes away with inflation.

[BlueSky16]

BlueSky16, when you say "kink", is that like a dogear ? I ask because you said that it goes away when inflated, and that's similar to a dogear. Also, it seems like if there was a problem, or something was bulging and at risk of failing, it would show up more when inflated and under pressure. If the problem is only there when deflated, that seems less likely to fail because of the lack of pressure.

- Chuck

My device actually functions okay and I don't have any pain. But I developed a kink on one of the cylinders when deflated-goes away with inflation.

In some ways, I agree with you. But the MRI findings seem concerning – kinking, particularly erosion beyond the corpora. That feels like something unusual that I shouldn’t ignore even though the device still works fine and I don’t have any pain.

[wilsonmill]

You have the Titan and is known for their dog ears, I always kept a pump or 2 in mine.. if you do have to get a revision it will not be near as uncomfortable as the first.. who and where did you get your initial implant?

[Kodixx]

BlueSky16, agreed -- can't ignore erosion. Have you gotten any feedback about what to expect if a revision is performed ?

- Chuck

In some ways, I agree with you. But the MRI findings seem concerning – kinking, particularly erosion beyond the corpora. That feels like something unusual that I shouldn’t ignore even though the device still works fine and I don’t have any pain.

[BlueSky16]

BlueSky16, agreed -- can't ignore erosion. Have you gotten any feedback about what to expect if a revision is performed ?

- Chuck

In some ways, I agree with you. But the MRI findings seem concerning – kinking, particularly erosion beyond the corpora. That feels like something unusual that I shouldn’t ignore even though the device still works fine and I don’t have any pain.

My surgeon is with Duke, so I’m not super worried about his technique, but I’m still extremely reluctant to go back under the knife again. We discussed a seemingly relatively simple fix, just using more non-dissolvable staples to put everything back together or something like that. But that was when we had discussed cylinder herniation. I don’t know if (potential) cylinder erosion changes things. Hopefully I’ll be able to speak with him soon.

[Kodixx]

BlueSky16, I don't recall reading much on the forum about cylinder erosion but it's probably worth some searches. FWIW, I'll pass along the link below I did regarding glans erosion. But have no idea if its applicable to cylinder erosion.

Best wishes on finding a path with your Dr, and we'll be anxious to hear how it goes.

https://www.google.com/search?q=can+a+mesh+graft+be+used+to+reinforce+thin+glans+for+penile+implants&sca_esv=5a4b1ba8a892269d&ei=NylxaJWzEZqvptQPkvCRkQc&ved=0ahUKEwjVqp-Zi7WOAxWal4kEHRJ4JHIQ4dUDCBA&uact=5&oq=can+a+mesh+graft+be+used+to+reinforce+thin+glans+for+penile+implants&gs_lp=Egxnd3Mtd2l6LXNlcnAiRGNhbiBhIG1lc2ggZ3JhZnQgYmUgdXNlZCB0byByZWluZm9yY2UgdGhpbiBnbGFucyBmb3IgcGVuaWxlIGltcGxhbnRzSMAsUPgIWJQrcAF4AJABAJgBnQGgAcoOqgEEMTQuNrgBA8gBAPgBAZgCDKAC3QrCAgUQIRigAcICBRAhGKsCmAMAiAYBkgcDNS43oAeIU7IHAzUuN7gH3QrCBwcwLjIuOS4xyAc8&sclient=gws-wiz-serp

- Chuck

But that was when we had discussed cylinder herniation. I don’t know if (potential) cylinder erosion changes things. Hopefully I’ll be able to speak with him soon.