Repair information

[MK1965]

newbie443,
From reading your operative report, it seems to me, I had same identical problem with proximal perforation and right to left cylinder cross over.
I attached my operative report to read about problems I encountered with Titan and how it was repaired with revision.
MK

[newbie443]

I had my 6 week visit Monday and ask the doctor about where the perforation was as the Nurse-Practioner had no information on it when I was at my 2 week wound check up. He said as the notes state that he did a sling in which he placed a permanent suture in the RTE and ran it up to the corporotomy. He made a stirrup and placed the end of the RTE back in the corporal body. I thought he closed the perforation but last Monday he said he did not. That is where I was hoping held and kept my cylinder where it should be but was not the case. So the perforation was not sutured closed and he said if it does come out again the sling will keep it from going as deep as it was before. So I guess the biofilm will surround the cylinder and maybe some healing will happen with the perforation to prevent this and infection but all the tests for infection in the biofilm came back negative. A percentage of us have sealed infection in our biofilm that can cause infection and is the reason infection rates are higher for reoperations. I was lucky for a change and the areas of biofilm checked were all negative. But the perforation was not closed in surgery. So that is a bit of worry and what I was concerned about having the cylinder come out through again. Keeping my fingers crossed. I am released from doctors care and cleared for cycling and sex though. Had to have some modeling done Monday so that is back to a little unlucky and am a bit sore. And I still have this quirky pump and old cylinders. Seems with the new work and support of the left cylinder now I may be a bit longer but lost some girth. To early to tell as I have just had 2 days of cycling after 6 weeks of not.

That sounds scary,,, are you inflating to what you feel is max inflation at this point ?
I would be afraid to inflate if there is a possibility of it coming out again.
Wouldn't they use a graph along with the sling ?

The graph or at least suture the perforation was my understanding before surgery. And I was told there could be another incision below my scrotum for this. I did have sore places below my scrotum after surgery that were not bandaged and seeing the notes indicate remote suturing I thought that is what had happened. I have self pay insurance with BCBSKS and they hate to pay for a new device. Either the first and even more so for a second. Local doctors only do 2-3 a year for the areas largest Urology clinic so I am sure it is because of insurance and they do not do repairs or revisions. Part of my research 3.5 years ago included talking with the clinic's business office and I was told then that results were so poor that many patients requested the device be removed after the first implant. That is why I gambled and traveled but had bad luck with the perforation. That doctor knew it and when I woke from surgery he was there and it was like a funeral march to recovery. The next morning when his resident removed the cath and my penis fell straight to the left there was a look of horror on her face and she look to the doorway where the surgeon was standing and he was nervously shuffling around with a guilty as hell look on his face so he knew what had happened. Most likely the reason he was so little help when I had other problems latter and refused to see me. Local doc's were no help as explained above and I could not afford to pay the first doctor a second time to fix his mistake and the rest of the problems that include glans hypermobility. I had to go to my gastro doc because the left RTE was poking on my colon to get a CT scan to get local uro's to try to send me out to a doctor for a repair. When insurance received that they decided to hinder any attempts to do so and opened up the doctor in KC for this and that is where they wanted me to go. I talked with a well known Atlanta and a well known NYC doctors and it was a slam dunk to remove my LGX and replace it with a Titan. But there was no way insurance was going to permit that. So my choice was to go with the repair now or wait another year until I go on Medicare. I was worried about infection with the left RTE being out and poking my colon so I went ahead. I pretty much figured that there would be no replacement due to insurance even though that is what the KC doctor had listed on the surgery order in that no device rep was in the OR for my surgery. Just more BS lies that I seem to experience from doctors. Bur I knew this going in. Now with this repair it is also going to be more difficult to get one of the out of state doctors to fix the glans hypermobility and repair the perforation and get rid of this wonky device.

This mornings max inflation did go as normal with a bit shorter than yesterdays but girth did return. This is another problem with my device in that every month or so it would inflate longer and skinnier. Both out of state doctors I contacted advised of problems with the 21cm LGX and advised against using another for replacement. But I should add that both of those doctors lean more to Coloplast than AMS. I am only slightly straighter now than before surgery and the right cylinder still has a ) curve to it and the left cylinder straight. The glans hypermobility is somewhat better in that the left tip is not down low at 4-5 o'clock. It is more at 3 o'clock now but still way to the outside and there is a bump visible from the base of the hard tip. The right tip is still close to the center and pushes on my urethra. I would be lying to say I am not more than a bit disappointed in not having the perfect outcome I paid for out of pocket. And also for the local care and lack of doing what was best for me to have a great outcome.

But no way to tell what the next year will bring. Just have to wait and see. Could be really good and it could be not so good. I made it though the last 3 years with this and another year is doable. Just have to see if I want to try to find a partner to use it with and risk erosion in my glans. Or if I just wait like I have been for the last year and a half. I do have it and it kinda works so I can cycle and not worry about size loss so that is a good thing.

[newbie443]

Newbie. Sounds like it’s going to come together for you, it all gets so complicated science and emotions merge and then interpretitation of it all.
My brain hurts lol,
My reservore move was successful although there is a lot of “ puffy “ area now where the old lump was so from my view straight down I’m still uneven looking but that beats the tennis ball sticking out my abdomen. Still very sore at incision site, was supposed to be a small cut but I see a “T” cut about the size of a dollar bill folded in half now that I have removed the last of the bandages. It low enough shouldn’t be a problem- no one looks at old guy’s, The pump was relocated sideways its looking good and more importantly no longer is a constantly sore, just hope pumping will not be an issue.
One week to post op opt. Maybe Dr will let me start cycling again
Cheers Gentlemen

I do not appear to have had size loss for my 6 week wait. The first 2 weeks I was at 50% inflation so this helped. Are you inflated a bit since surgery?

[cbinspok]

Newbie, at the point I was Oked to cycle- I did X2 daily and within 2 weeks gained back 1/4"+ of the inch I lost (measured pre & post op) I also Ved along with cycling. then the ball incision infection and I was ordered to hold off - I snuck in a little pumping but was basically I was a good patient. I'm optimistic I can gain back my size, heaven knows i'm not after my per peyonies size -that would be haven sent-Lol.
Can I bitch about one thing I never see on these pages? , Well here it is- GOD DAMN IT- STOP SHAVING ME! I know its a silly matter but the month of itching and irritation drives me insane,,,and I'm not a super hairy guy (i wish) but there is enough to bug me crazy. Not one to clean shave- its a look, just not for me. OK I feel better now- Thanks for your ear.
Lets hang in there! cb

[newbie443]

I was not one to shave either in my youth. But I really like to give oral to a woman and if she is clean shaven it is really great. Even mostly shaven is awesome. So I figured a women who likes to give oral would like the same. If the women can shave for us I figure it is fair play for us to do the same. As I have been waiting and not dating for a year and a half I have not kept up with this but if I do start dating again I will shave.

I just dislike the drugs they give me for surgery and hate narcotic pain meds. They make me sick. I used a couple for my 3 hour ride home from my last surgery and was sick but had reduced pain. The pain even with the very low doss of Oxi was still rough and I did get some relief from pit stops but really did not want to get back in the car. I was still a bit sick and if the pain meds had been stronger to handle the pain I would have been sicker. That is why my choice was so difficult as it looks like now I will be looking at another surgery next year.

[newbie443]

newbie443,
From reading your operative report, it seems to me, I had same identical problem with proximal perforation and right to left cylinder cross over.
I attached my operative report to read about problems I encountered with Titan and how it was repaired with revision.
MK

I did not have a crossover. My perforation was lower after the Crus separated. Or farther inside my body, I hope it all works well for you.