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Thursday, December 20, 2007 - 6 Months Post-op At my appointment with my urologist, he told me that he would like to surgically remove the "pocket" of unknown tissue type, and at that time he would repair both the internal fistula (between the new urethra and the "pocket") and the external fistula (between the "pocket" and the outside world, opening just behind my scrotum). He also drew me a picture to describe my situation. The following picture was drawn by my surgeon, but I added the colors and the description:  The purple line represents the current pathway that urine flows - when I urinate, it flows from both the tip of my penis (through the new urethra) as well as through the internal fistula, into the "pocket," then out through a hole behind my scrotum. The red circle represents what will be removed during the revision surgery. Since he will be removing an entire pocket of tissue, my doctor said that it can be hard to fill that area with surrounding scar tissue. Therefore, they will take a graft from my gracillis muscle (the most superficial muscle on the inside of the thigh). Since they will be using a graft, a plastic surgeon will have to be involved with my surgery, which works out well since I was already planning on getting a plastic surgeon to do a chest revision for me during the same surgery to minimize the number of times I have to undergo general anesthesia. Friday, January 18, 2008 - 7 Months Post-op I scheduled my revision surgery for mid-March. It looks like I will most likely be able to have simultaneous pubic liposuction to help make the penis more prominent as well as the chest revision I was previously perusing. Tuesday, March 4, 2008 - 8.5 Months Post-op : 6 Days Pre-1st-Revision I had my pre-op appointment for my revision surgery. I met with an intake nurse, an anesthesiologist, a resident from urology, and a hospital admissions person. If all goes as planned, I should be having a urethral fistula repair and "pocket" excision while using a gracilis muscle flap to fill the "pocket" area, pubic liposuction, and minor chest revision. I will have an indwelling catheter (Foley catheter) and a suprapubic catheter placed during the surgery. A week after surgery, the Foley catheter will be removed and I'll have a voiding trial. If everything goes well with voiding, the suprapubic catheter can be removed. This, of course, is all subject to change depending on what they find during the surgery and how it goes. I will be the only case of the day, and they OR is scheduled for 8 hours. They also did a follow-up urine culture to make sure my bladder infection was cleared. They said they would call me if they found anything and that "no news is good news." Since I never received a call about it, I assume it came back normal. Friday, March 7, 2008 - 8.5 Months Post-op : 3 Days Pre-1st-Revision I received my health insurance preauthorization acceptance in the mail, which approves me for "urethropalsty." It did not mention anything about the plastic surgery piece so I am still unsure how that part is being billed or if my health insurance will pay for any of it. Monday, March 10, 2008 - 8.5 Months Post-op : Day of 1st Revision We arrived at the hospital at 6:00 am, and after meeting with an intake nurse, we were taken upstairs and given a pre-operative exam room. Doctors and residents from anesthesia, urology, and plastic surgery all came in to tell me what was going to happen in the OR. At about 7:30 am I was wheeled into the operating room. I don't remember much from the point after they gave me the "calming medication." During the surgery, they performed the following procedures:
My dressings included an ace bandage around my left leg from where they took the gracilis muscle and some gauze packed around the perineal area. I also had two drains: one from the incision in my leg and one from the incision in the perineal area. At the same time as this bottom surgery revision, I also had a minor chest surgery revision at the same time. I did not have a drain in the right side of my chest, unlike during my original chest surgery, because my plastic surgeon said he didn't think I would need one; I had a "pressure dressing" on instead. Since this is a document about my bottom surgery, I won't be putting in updates about my chest surgery revision healing, but just in case you can see the bandages, that's what it's from. In addition, I had a Foley (indwelling) catheter taped in place; to my surprise, I did not have a suprapubic catheter. My urologist said the Foley will be used to instill the contrast dye for the post-op imaging, it will be pulled, then I will urinate the contrast dye as usual for the VCUG. Apparently, my urologist is confident in the repair and is sure that it won't leak, so they did not put in a suprapubic catheter for the voiding trial we had previously discussed. I'm just hoping that it really does heal correctly this time. Tuesday, March 11, 2008 - 8.5 Months Post-op : 1 Day Post-1st-Revision I slept on and off, watched some TV, and ate some regular food. I wasn't allowed to get up at all so I spent the day in bed. I also got my first look at the incision on my leg - it runs along my left inner thigh and goes all the way from about four inches above my knee to almost where my thigh meets my scrotum. Although I was originally told I would spend only night "for observation" in the hospital, meaning I would go home on this day, they decided to keep me one more night (for a total of two nights). Wednesday, March 12, 2008 - 8.75 Months Post-op : 2 Days Post-1st-Revision I woke up feeling much better than the day before, probably because I knew I should go home that day. Doctors from urology and plastic surgery came early in the morning and removed both drains, the one in my leg and the one from my perineum. Removing the stitches that kept the drains in place was extremely painful, but I barely even felt the actual pulling out of the drains. They finally allowed me to get up, and a physical therapy nurse came to help me. She brought me to a room where I walked with the bars, then some crutches. Since I was somewhat unsteady, they sent me home with the crutches...the operative word being HOME! They sent me home with the Foley catheter, thigh ace bandage, and chest compression bandage. I was given Tylenol with Codeine to take as needed for pain and Cephalexin (Keflex, antibiotic) to take 4x per day for 7 days. Thursday, March 13, 2008 - 8.75 Months Post-op : 3 Days Post-1st-Revision Ever since coming home from the hospital, I had been very nauseous, and my doctor thought it might have been from the Tylenol with Codeine, which wasn't even cutting the pain that much. So, I was switched to Hydrocodone, which worked much better and did not make me nauseous. Sunday, March 16, 2008 - 9 Months Post-op : 6 Days Post-1st-Revision I woke up with a very strong sensation of needing to urinate. It seemed to come and go, but when it was there, it was very uncomfortable. Also, my left ankle had turned into a cankle overnight, with quite a bit of edema in my left foot. I thought that may be because I have kept my left knee elevated for the past 6 days with my left ankle being lower than my knee. It eventually went down by keeping it elevated. Wednesday, March 19, 2008 - 9 Months Post-op : 9 Days Post-1st-Revision I went back to my pediatric urologist and had my first post-1st-revision (fifth total) VCUG. They instilled the contrast dye through the Foley catheter I had then pulled the catheter so that I could urinate for the first time since surgery. The only "abnormality" seen on the radiograph were two small lines, right at the same place where the leak used to be. Upon further examination, both the radiologist and my urologist said they thought they were simply some metal clamps that are routinely used during this type of procedure, and this determination is supported by the fact they look the exact same as two other metal clamps used elsewhere during the surgery (see below). According to that study, there was no more leak! My urologist told me to return in 6 months. The following are images from the VCUG. I've marked the urinary tract in yellow and the metal clamps in light green. Only one metal clamp at the previous leakage site can be seen in this view, but the two other metal clamps can be clearly seen towards the bottom of the image.   VCUG #5 - 9 Days Post-1st-Revision Saturday, March 22, 2008 - 9 Months Post-op : 12 Days Post-1st-Revision Just a few days after they pulled the catheter, I began to have the same leaky/"peeing in my pants" feeling that I had before the revision. I was still having some seepage from the sutures so it was hard to tell if it was just that or if I should be more worried about a urine leak. It may be notable that for the first couple of days after the Foley came out, I had a LOT of velocity/pressure when I urinated...and this pressure went away when I started having the leaky feeling again. I didn't know if both of these findings could be attributed to swelling going down (which could have accounted for the increased pressure/velocity) and slowly gaining more feeling around the site (maybe I'm just more aware of the "normal" feeling now). Wednesday, March 26, 2008 - 9 Months Post-op : 16 Days Post-1st-Revision I developed what has been, so far, the most miserable of bladder infections, which almost sent me to the ER because I was in so much pain. Due to a miscommunication between me and my primary care physician, I was started on Bactrim (antibiotic) before a culture and sensitivity could be done. Instead, a culture and sensitivity will have to be done after I finish the week's worth of antibiotic. Sunday, March 30, 2008 - 9 Months Post-op : 20 Days Post-1st-Revision I've noticed that the leaky feeling is definitely still there, but the amount of fluid coming from my suture lines after urination seems to vary. Also, the fluid that comes from the suture lines after I urinate always has a reddish tinge to it, while the urine that comes out from my penis does not. It certainly hasn't progressed to dripping while I urinate as it did before so I figured I would just wait and see what it's like once the suture lines are completely and inarguably healed up. Everyone tells me that fistulas can spontaneously heal within 6 months, and with the new, healthy muscle tissue from my leg now overlying it, the chance of it spontaneously healing should be pretty good. Tuesday, April 1, 2008 - 9 Months Post-op : 22 Days Post-1st-Revision While I was going to wait until I finished the Bactrim antibiotic to call my urologist's office to get the order for the follow-up urine culture and sensitivity, my bladder irritation began to get much worse. I talked to the urology nurse who told me to do the culture and sensitivity that day and start a different antibiotic (Ciprofloxacin). I also mentioned to the nurse, who told my urologist, that I was still leaking urine from the perineal area. Wednesday, April 2, 2008 - 9.5 Months Post-op : 23 Days Post-1st-Revision The urology nurse called back to ask me how I was doing. The Ciprofloxacin definitely made me feel better than I felt the day before, but there was still some irritation. It was decided to a Retrograde Urethrogram (RUG), the same procedure I had at my December 20, 2007, appointment to see if I had a stricture at the surgical site that could account for the irritation I was feeling. The thought of having a stricture was incredibly anxiety-provoking, but I had been worried about this possibility anyway considering the noticeable decrease in my urine stream flow. Friday, April 4, 2008 - 9.5 Months Post-op : 25 Days Post-1st-Revision The Retrograde Urethrogram (RUG) procedure was the same as the last time I had it done on December 20, 2007. They inserted a catheter about halfway up the urethra and instilled contrast dye to visualize any fistulas or strictures. The radiologist decided she also wanted to do a VCUG to fully evaluate the entire urethra (a RUG can only really look at the most distal part) so they advanced the catheter into my bladder. While advancing the catheter, it was quite painful and she said she felt resistance, which made me even more worried about the possibility of a stricture. However, after completing both the RUG and VCUG, both the radiologist and my urologist said they did not see any evidence of a stricture or urethral narrowing (thank goodness). Also, the urine sample I dropped off at my PCP's a few days before came back clean - also good news! They ruled that it must then be post-op spasming and gave me a prescription for Ditropan (oxybutynin), the same drug I took shortly after my original surgery last year. I asked the radiologist about what could explain the pain and feeling of resistance during catheterization, and she showed me a small diverticulum (see below, red arrow) at the site of the repaired fistula that she suspected the catheter was getting caught in and causing the pain. I, of course, am still nervous about stricture formation, especially considering my continued decreased flow rate when I urinate. Also, there is definitely still leaking from the perineal area when I urinate, but the contrast dye did not show this during the RUG or VCUG. I suspect that it is just so small that not enough contrast flows through it in order to be seen on the films; this is exactly what happened at my December 20, 2007 appointment when they did not see contrast dye exiting at the skin in the perineal area, but even the radiologist saw the hole in my skin enough to attempt a Fistulogram at that point. For now, I feel like I need to just trust what has been found on the VCUG images, hope whatever tiny fistula that must be there will close on its own, and just wait it out.   RUG #6 - 25 Days Post-1st-Revision   VCUG #7 - 25 Days Post-1st-Revision Thursday, April 10, 2008 - 9.5 Months Post-op : 31 Days Post-1st-Revision The anti-spasmotic medication (Ditropan) seemed to have helped a little bit, although the urgency and painful frequency feeling hadn't completely gone away. I talked to the nurse at my urologist's office and she said to increase my dose of Ditropan from 5mg/day to 10mg/day to see if that helps. Thursday, April 17, 2008 - 10 Months Post-op : 38 Days Post-1st-Revision I began having the rather unpleasant Ditropan side effect of dry mouth again. Since I was no longer feeling the bladder pain nearly as much, I switched back to 5mg/day of Ditropan, with the intent to completely stop in a few days. It seems as if the wait-it-out strategy has actually been working - although I sometimes still feel as if I'm leaking urine from the perineal area when I urinate, the amount of wetness that actually leaks through has definitely decreased to about a pin-head (it used to be the size of a quarter). The only slightly disturbing thing is that now that the pin-head-sized area is always very red and has the consistency of mucous. Also, there is a bizarre round-to-oval shaped "skin tag" of sorts that is very red/pink in color in the perineal region, but it doesn't seem to be associated with any of the suture lines. It's just this random thing hanging out that looks like it's being pushed through a little hole and out of my body. It's been there for so long that I thought that it's been there since the revision surgery, but after looking at the photos it's clear that it actually is a relatively new development. I figured I would just ask one of my surgeons about it at my next appointment. Tuesday, April 22, 2008 - 10 Months Post-op : 43 Days Post-1st-Revision My third post-op appointment with my plastic surgeon went well, and he told me that the pink "skin tag" was just a piece of granulation tissue (normal healing process). It actually had fallen off by itself the day before my appointment so he used a little silver nitrate to cauterize the area and I was on my way. Monday, August 11, 2008 - 1 Year, 2 Months Post-op : 6 Months Post-1st-Revision The check up with my urologist also went well. The leaking while urinating had officially stopped a couple of weeks ago, although it still felt a little "full" down there when I urinated, especially when standing. It's hard to tell if that's just because I'm not yet used to the "normal" feelings, which are slowly becoming more "normal" for me. It seems like the wait-and-see technique really did work! My urologist said he hopes that it will continue to close up over time and that full feeling may also slowly go away. Tuesday, October 28, 2008 - 1 Year, 4.5 Months Post-op : 8.5 Months Post-1st-Revision At my next check up with the plastic surgeon , he said my leg scar looked good and had healed nicely. We talked about how I wasn't satisfied with how my testicular implants had not "dropped" correctly (the left one being so high that, when standing, it didn't even look like there was an implant there at all. He suggested removing the implants, putting in skin expanders, slowly expanding the skin over 6-8 weeks, then replacing the implants. Fixing the implants was definitely something I wanted to correct eventually, and I needed to think about when the best to do that was going to be. It was nice to know that he was receptive to my concerns and dissatifaction with the implants and that we was willing to work with me to fix them. Friday, October 31, 2008 - 1 Year, 4.5 Months Post-op : 8.5 Months Post-1st-Revision I noticed there is a very small external fistula on the shaft, near the tip of the penis. It figures that I would notice just a few days after seeing my plastic surgeon, but I guess I will see what my urologist says about it at my next appointment with him. Monday, November 17, 2008 - 1 Year, 5 Months Post-op : 9 Months Post-1st-Revision My urologist confirmed that there is a small fistula on the shaft that will need to be repaired surgically (there is no chance for spontaneous closure of this type of fistula like there was for my internal fistula). I also told him about my conversation wtih my plastic surgeon about the testicular implant revision, and he said they could coordinate the two (fistula fix and expander insertion) during one surgery to minimize the need for multiple anesthesias. Hopefully, combining the two may help to get insurance to cover the testicular implant surgeries. Thursday, January 22, 2009 - 1 Year, 7 Months Post-op : 10.5 Months Post-1st-Revision Big day for doctor's appointments and procedures! Over the holidays, I had continual bladder spasms and burning while urinating (similar symptoms to what I had experienced before) - I had a urine culture and sensitivity done by my PCP that came back negative (but was put on Macrobid just in case), and I had been taking Ditropan (oxybutinin) for a couple weeks with no real improvement. My urologist wanted me to come in for another Retrograde Urethrogram (RUG, #8 imaging study so far), which actually turned into a Voiding Cystourethrogram (VCUG, #9 imaging study so far) as it did back in April 2008, to check for strictures. Luckily, the radiologist and my urologist said the urethra actually looks very good, with no evidence of strictures or narrowing. They said it has some redundant folds, but that is very common in reconstructed urethras. The fact that no strictures were seen was a huge relief. My urologist suggested it may have just been a transient bacterial or viral cystitis and to notify them if it happens again. Of course, it spontaneously resolved just days after the imaging tests. We also briefly talked about the upcoming surgery to fix the small external fistula, and he said that everything seemed in order to proceed with the revision. Later that same day I had an appointment with my plastic surgeon to check in about the upcoming surgery to replace the testicular implants with tissue expanders. He said that the expansions will begin 2 weeks after the surgery, and 4-6 expansions (one per week) will probably be enough, depending on my skin's response to the expansions. The second surgery to replace the tissue expanders with new implants would then take place. He said to keep in mind that some recoil will take place after the second surgery, so it may be better to stretch a bit further than "just enough" to account for this. We also talked about doing another (minor) chest revision due to the scar tissue formed by the hematoma after the past revison surgery - he agreed to put in a drain this time to try to prevent another (third!) hematoma. I also found out that my insurance approved both surgeries (replacement of implants with expanders and then subsequent re-placement of testicular implants) as well as the urethral fistula surgery. |