I had my consult with Dr. Crane and Toni, his Microvascular Plastic Surgeon Physician's Assistant in Austin, TX over the summer. There were a lot of questions that other guys had already answered for me or posted on their blogs (see Why Crane? for those links), so please do not consider this an exhaustive list. Below are some excerpts from that conversation.
Initial questions w/ Toni
Toni: Is your main goal to stand-to-urinate, penetration, or both?
Me: Stand-to-urinate. Penetration is a plus, but not high-priority. High priority is having a penis.
Me: I'm considering not having a vaginectomy and wanted to know if I don't have it initially, is it possible to have it done down the line?
Toni: Yes and Crane can explain that better to you.
Toni: Do you want a scrotoplasty as well?
Me: Yes, I had a "scrotoplasty" during my metoidioplasty with Dr. Medalie where he puts the testicular implants into the labia majora leaving a bifurcated scrotum. I'm not happy and I've been left with discomfort from this?
Toni: Is it painful or is it not in the right position?
Me: Both. It is sore all of the time.
Toni: How long ago did you have this?
Me: About 2 years ago. I had a revision a year ago, which didn't make it better and might have made it slightly worse.
Toni: So you had a bit of a scrotoplasty, but maybe not an official one?
Me: Correct and I'm worried that maybe it was coded as such. I'm worried about my insurance not covering this a second time if they see it as already having been done. (Late in the consult, Crane said this probably won't be an issue and if it was he'd code it differently.)
She also asked whether I had a hysto, top surgery, how long I had been on T, whether I smoke, whether I had allergies to medications, and what my preferences for a surgery date were. Then she gave me an overview of what to expect.
Phalloplasty Overview - What to expect
Toni: If you do the phalloplasty, you'll do it from the forearm or the thigh. For either one, we take the tissue and then use a skin graft from your thigh to cover up the area we took the tissue from. We only take skin, fat, and soft tissue - no muscle. What we do is dissect down, so if we're doing your arm we go down the crease of your forearm. It goes about mid-forearm, maybe a little longer and it's about 3/4 of the way circumferential. Now, hair removal. You'll want to start immediately. You can do it afterwards, but some people don't want to be in that situation. So, again we take the soft tissue off and then take a very very thin layer of skin from your thigh and we cover that area. You'll have a vac dressing over the top of it and that stays on there five days while you're in the hospital. You will have a splint in place on your hand cause as you see when we move our hand our tendons move around. We don't want that graft to be moving, so we put your hand in a splint. Your hand stays in a splint for a few weeks. You will be meeting with the hand therapist afterwards and they're going to start you on range-of-motion activities cause your hand is going to get stiff pretty quickly.
Me: Will I need a local hand therapist as well?
Toni: I don't think you'll have to have one since you're going to stay here for about 3-4 weeks afterwards and a lot of times they teach you what you need to know. You get connected with them here before you leave the hospital. They make a new splint for you because you're also going to be doing dressing changes every other day and they make a splint that you can take on and off. People are concerned a lot of times about the function of the hand and nerve, things like that. The hand does get swollen afterwards and that works itself out with the hand therapy. There are some tiny little nerves in there and we take your radial artery. Those are superficial sensation nerves, so occasionally you get a little numbness on the back of the hand. You'll also have a suprapubic catheter in for 3-4 weeks as well.
Later in the consult, Crane revisited this topic and said the goal is to keep the skin graft moist while it is healing. At first you can see through the skin graft, but by weeks 4-5 it thickens up and to not get too freaked out by it initially.
Previous Surgery and Phallo Options w/ Crane
At this point Dr. Crane came in and we talked about my previous surgery. I shared more about my frustrations and discomfort, especially the results from Medalie's "scrotoplasty." He mentioned that only he and Dr. Meltzer do a formal scrotoplasty for the metoidioplasties and that everyone else puts the testicular implants under the skin. He agreed with my perspective that this technique is what caused both the gross asymmetry and the soreness I experience. He asked if I would show him and Toni the results (my genitalia) and I did. Crane, generously and diplomatically, framed this as not being what he would consider "standard practice" for this surgery. We then talked about urethral lengthening since I did not have it with my metoidioplasty. I told him that I was trying to have the least invasive procedure, but discovered from the results that I was selling myself short and this wasn't what I wanted. Crane mentioned that about 20%-30% of his own metoidioplasty patients come back, happy with the results of the surgery, but wanting a phalloplasty after all because, in their words "having 1-2 inches is not enough."
Crane: So you want to go with urethral lengthening?
Me: Yes
Crane: So, it is more difficult because tissue that I would have used to create the urethra is now gone. There would be a higher risk of complications. It's something that I can do, but there would be a higher rate of stricture or fistula. I would say if your happiness depends on it, then we should try. If it's not a big deal, I would advise you to not do the urethral lengthening with the phalloplasty.
Me: To me, it's a huge priority.
Crane: Okay. We can do it. It's just going to be a matter of using tissue that's there to create a urethra that we normally don't use. What that is going to do is give you a smaller scrotum. Basically, you want your urethra to be in the mid-line and then run right up to the phalloplasty. What I can do it take parts of the meta and curl them around and make the urethra. Normally I would use a 3-4 cm of skin to build the scrotum, but I'll need that for your urethra. You'll lose about 25% of your scrotum. I would also take out the implants that he put under the skin. I'll rebuild the scrotum the way I do it. Then, we'll put in new implants in stage 2. If you want a really big scrotum, we could do that, but that would mean no urethral lengthening.
Me: I'd rather have the urethral lengthening.
Crane: Another option is that I have had a number of patients, once I build the scrotum, we put tissue expanders in it. Tissue expansion is a labor-intensive endeavor. You basically put a deflated balloon in there. You have a port underneath your skin. You inject yourself every other week with 10-15cc's of water, it fills up that balloon over a 4-5 month process. Then, once you're full then we have you come back and remove that and put implants in.
Me: Have any of your patients done that? Have they felt satisfied with the results of that?
Crane: Yeah. They were really happy with it. If you include all of my phalloplasties and metas, that's about 350 patients. I've had 3 patients do it. In general, patients are happy with the scrotums I make. But, in general, they haven't already had a simple meta with no urethral lengthening. I've done this surgery before probably fives times and the scrotum is smaller than usual, but none of those patients opted to have tissue expansion.
Pros/Cons of Vaginectomy w/ Crane
I told Dr. Crane that I was on the fence about having a vaginectomy and asked him what the pluses and minuses would be.
Crane: There's a higher risk of urethral fistula if there is not vaginectomy. The reason is because right now your urethra comes straight down and we want it to come straight down and curve up and out. That point where there is a 90-degree turn. If I'm doing a vaginectomy I can sew extra tissue over that 90-degree turn that would prevent a fistula - that's when there's a connection from the outside skin. If I don't do a vaginectomy, there is much less tissue, so those suture lines can grow together. If those suture lines grow together, then when you urinate it'll come out that hole. It won't make you sick. It just means you'll have to sit to urinate for a little while longer while we wait to fix it. There are times when you want to recut tissue and times when you don't. Generally, you want tissue to heal for about 6 months before you recut because if you cut inflamed tissue it doesn't heal as well.
Me: What are the complications, in general, that come with having a vaginectomy?
Crane: I have my vaginectomy down to where I lose about 100-150cc's of blood and it takes me about an hour to an hour and a half. So, I haven't had an infection in a few years from a vaginectomy. There is a risk of injury to the urethra, the bladder, or the rectum. That risk is less than 1%. A lot of patients come to me worried about having a vaginectomy because of blood loss. Not in my hands and I have an extremely low complication rate. So, clearly the only time that people want to keep the vagina is when they want to be penetrated in which case it's good to keep. If that's not a goal of yours, I would just get rid of it so that you don't have that risk of fistula.
Me: For people who don't get the vaginectomy, do they have problems with penetration after the phalloplasty?
Crane: You can get some scarring around it because I'll be raising the labia to build the scrotum. You'll have a suture line going 172-degrees around, but that can be dilated open. I would say there is a small risk of stenosis or narrowing of that area.
More on Strictures, Fistulas and Complications w/ Crane
Crane: A fistula is basically a hole. Is a connection from the urethra to the outside skin. It is when a suture line from the urethra heals to the suture line from the skin and so there's just a little hole so when you urinate some may come out through the scrotum or near the vaginectomy site. It won't make you sick or cause an infection. It's just that the urine is not going where you want it to.
Me: How does that get resolved?
Crane: Fortunately, in the first 3 months about 90% heal on their own. It just means that the suture line is not water tight yet. If it is still there in 3 months it's not going to go away. At that point we wait another month to 3 months to go in and fix it.
Me: And a stricture?
Crane: A stricture is when scar tissue builds up in the urethra.
Me: So, the likelihood of me getting either of those has gone up already because of the fact that I've already had a metoidioplasty without a urethral lengthening.
Crane: Yeah.
Me: And, do the rates of both go up if I also don't have a vaginectomy?
Crane: Fistula goes up if you don't have a vaginectomy.
Me: What might happen that I would need to extend my stay in Austin?
Crane: Its usually for patients when their pain is not controlled - that's staying in the hospital. Staying here in TX. Maybe 10-15% of the time, we decide to leave the suprapubic tube in longer. A number of patients can get that taken out at home or I've taught a number of patients how to take it out at home. It's really easy. Occassionally, there are patients who have a lot of anxiety and they won't leave here until they get it taken out. There is no medical reason for doing so. One risk of surgery is partial loss of the phallus. Full loss of the phallus is something I haven't had happen yet. Partial loss I've seen in 3% of patients. If that happens, sometimes I have patients that don't want to go home with a healing wound, but the vast majority of patients who run into things, I give them instructions and they go home and see their primary care doc and it's not a big deal.
Communication, Hair Removal, Freckles, Size, Erectile Devices, etc.
Crane talked about communication, acknowledging that it can be very difficult getting in to see him, but that the priority goes to post-op patients. Once post-op, patients get his cell number, Toni's contact information, and can and should go directly to the source for any questions or problems.
I asked Crane to point on my arm where the hair removal should be. He said from the "wrist crease" to 2/3 the way down my arm. I asked him about moles and freckles on my arm that I didn't want on my penis. He said to get them removed as soon as possible and to tell the dermatologist not to cut deep, like a little punch biopsy. He also affirmed that I didn't need to out myself to the dermatologist (Turns out, I did and the dermatologist was cool about it.)
Me: What are patients most and least satisfied by with this surgery?
Crane: We have a really high satisfaction rate. Least satisfying is...people who want six inches who, when we tell them we can't guarantee anything, they end up with 5 or 5.5. Urethral complications, urethral stricture of fistula. The skin graft on the arm - you should be aware of how that looks. You know, that never looks like normal skin. Having a suprapubic tube. The longer it is in, the more it gets irritated. Usually in the final week, people are pretty sick of it.
Crane talked about size saying that ALTs usually end up between 6-8 inches in girth and forearms end up between 4-5 inches in circumference.
I already knew quite a bit about the two options for erectile devices and was pretty overwhelmed with information, so we brushed over it. He mentioned that there will be samples when I come down for my phalloplasty so that I'd have a better idea what the options could be. In general, he's finding that more guys are interested in the function of the inflatable, but that 50% of them break in 5 years and pretty much all break in 8 years. A small % of guys who get the inflatable rod don't like the asymmetry of the testicles (the pump takes the place of a 2nd testicle) or they don't like where the pump sits. He said it's still not clear which is the better choice. The semi-rigid rod can last 25 years, but its a mixed bag how guys feel about the look and function. The only phalloplasty-specific implant (in Sweden) is not interested in putting this on the US market because of the cost of getting it through the FDA. The upside is that erectile devices can be put in at any point in the future.
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