Dr. Berli and Dr. Genoway

After working so long towards surgery and waiting an interminable amount of time for funding, it’s a surreal feeling to type this: I had Anterolateral Thigh Flap (ALT) Phalloplasty on May 11, 2018. I’m inching ever closer to 1 month post-op. My surgery was performed by Dr. Jens Berli, assisted by Dr. Nichole Joslyn, at Oregon Health Sciences University (OHSU) in Portland, Oregon. Dr. Krista Genoway, the plastic surgeon slated to eventually perform Phalloplasty in Vancouver BC, attended and observed my surgery.

My Surgery Explained

My ALT Phalloplasty is being done over three stages. My first stage included creation of the penis using skin, blood supply and a nerve from my right thigh (lateral cutaneous femoral nerve.) A split thickness skin graft was taken from my left thigh and grafted over the donor site on my right thigh. A urethra was created in the penis (distal urethra) and exits a couple of inches below the base of the penis (proximal urethra). The urethra is not yet connected to the native urethra meaning I pee like I always have, for now. That connection (urethroplasty) will happen in Stage 2. One of the labia minora was also removed in preparation for urethroplasty.

The Days Before Surgery

I traveled to Portland by myself on May 7 and spent the days leading up to surgery doing final preparations—logistical, physical and mental. I had a pre-op appointment with Dr. Berli on May 8th to go over final details. I did some last minute shopping for things I would need during my recovery. I ate very clean, swam every day, relaxed in the hot tub and sauna, and walked all over downtown Portland, bathed in glorious sunshine, with a strut that I knew I wouldn’t have back until fully healed. I wasn’t excited per se, because the magnitude of the surgery loomed large—how long and difficult recovery can be and all of the things that can go wrong—but my mood was very calm and happy.

Zero Day

I checked in at OHSU at 5:30am on the 11th and any anxiousness I might have had was swallowed up by things to do: strip down and wash my body with antibacterial cloths, meet with a nurse to discuss drug allergies and intolerances, get marked up by Dr. Berli, and meet with the anesthesiology nurse. Before I knew it I was in the OR and within minutes, out cold. Time: 8am.

When I woke up it was dark and obviously night time. My surgery had gone quite long: 13:45. The plan was to do my ALT as a pedicled flap, which preserves the blood supply from the donor site. Instead of cutting that blood supply, the ALT flap is relocated to the genital area through a tunnel created underneath the rectus femoris and adductor muscles. This requires less microsurgery and reduces the risks of flap failure and necrosis. During my surgery however, two important observations were made:

  1. Of the three perforators* identified pre-operatively, only one was long enough to use. If the perforator is big enough, one is usually sufficient for the vascularization of the ALT flap, but it does make the surgery more demanding.
  2. That one perforator still wasn’t long enough to pedicle the flap. If the perforator isn’t long enough, it creates too much tension which can result in vascular insufficiency.

*For more information, see: Perforator Flaps and Perforator Arteries

As a result, Dr. Berli converted my surgery from a pedicled ALT flap to a free flap, which requires more microsurgery and lengthens the surgery time. The nurses were amazing about calling my wife back in Canada every two hours to update her (and she in turn updated family and friends waiting for news.)

I later asked Dr. Joslyn about how they can maintain their focus in the OR for over 13 hours—what seems to me to be an incredible feat of concentration and stamina. She mentioned that the notion of time kind of disappears when they’re operating and she made it sound like just another day at work. I think these abilities make them super-human!

Unexpected Nerve Injury

Shortly after awakening I realized that I couldn’t feel my thumb, and index and middle fingers on my left hand. I also had a lot of pain in my left elbow. This caused me some anxiety because I knew the surgery plan had been altered and I became very concerned that my left arm had been used, perhaps as a secondary flap for the urethra.

One of the reasons why I chose ALT Phalloplasty over Radial Forearm Flap (RFF) is because I’m a guitar player and needed to avoid the possibilities of reduced grip strength and persistent hand swelling. Now, these don’t typically impact daily life and are not considered complications for most people, but could be detrimental to playing guitar. But I was assured that no, my arm had not been used in any way.

What I was experiencing was iotrogenic neuropathy—an injury to the radial forearm nerve caused by the position my arm was in during the long surgery. They moved my arms and hands on an hourly basis, but sometimes this happens. I was prescribed Gabapentin, a nerve pain medication, and at 3 weeks post-op I can report that my elbow and hand are back to about 95%. I still have some elbow pain when I extend my arm fully, and some arthritic-type pain in my fingers, but no more “pins and needles”. I’m confident I will recover fully from this given a bit more time.

Sidenote: I was concerned about what I might say when waking up from anesthesia. Nurses have heard it all, but I really hoped I wouldn’t embarrass myself too much. Well, upon wakening I apparently asked, “Has the band started yet?” and “Where’s my guitar??” Ha! 🙂

My Days in Hospital

Day 1 and Day 2 post-op were fairly unremarkable in terms of physical pain. Surely this had to do with the Dilaudid and OxyCodone I was given. I remember feeling some pain in my skin graft leg, a burning sensation, along with the nerve injury pain, but the drugs kept pain in my other surgical areas at bay.

These days were mentally challenging. Unlike a lot of stories I have heard about patients feeling an immediate relief after surgery and a connection with their new penis, I did not have these feelings. I knew that my surgery had carried some risks with regard to blood flow and I felt hesitant to get too attached to my results, lest the worst case scenario came to pass: loss of my penis. Nurses checked the blood flow in my penis on an hourly basis with a Doppler and each time we heard that pulsing swoosh I let myself feel a bit more confident. But I was scared too: what if all I had just gone through, the years of preparation, and all of Dr. Berli’s hard work was for naught?

I did not want to distract myself from these feelings. Not once while I was in hospital did I: turn on the TV, read a book or magazine, or watch a movie on a tablet. I didn’t even listen to music until day 6, my discharge day, when I was feeling more confident and fired up a couple of live concert videos on my phone. I wasn’t interested in any distractions, I just wanted to rest and focus on helping my body heal. So, I slept, I meditated and recited mantras, and when my emotions started to bubble up, I sang.

I texted with my wife, family and friends, and made a few phone calls to family, but I had no visitors aside from OHSU folks. Frankly, I didn’t need visits because they keep you busy at OHSU! Just after 6 or 7am, a team of 4-6 plastic surgery residents would come check on everything. (I was always happy to see them because I slept poorly and had weird dreams, as well as nightmares about my penis falling off—manifestations of my anxieties that were surely influenced by the unfamiliar drugs I was on.) The outstanding nurses and aides were available at all hours whenever I needed assistance. The OHSU Transgender Program‘s amazing intake specialist checked in a couple of times and OHSU’s Media Relations specialist also popped in to talk one day. All of this, plus meal times, added up to a full day.

On the topic of meals, I should mention at this junction that the food at OHSU was excellent! When you think of “hospital food,” you think sub-prime at best. This is not the case at OHSU. I took advantage of the chicken or veggie broth available from the nurses station in the first couple of days when I avoided solid foods. Always soothing. Once back on solid foods, I chose a breakfast consisting of vegetarian sausage patties, plain yogurt, apple sauce, a fresh fruit bowl, orange juice and peppermint tea. For lunch, I chose grilled salmon with brown rice, steamed greens or asparagus, the Oregon greens salad (with dried cranberries and roasted hazelnuts), fresh fruit, rice milk and chamomile tea. I also had the tomato basil soup and treated myself to Häagen-Dazs mango or berry sorbet a couple of times. I skipped dinner if I ate a late lunch, otherwise I’d have the salmon again or the South Asian curried tofu. Zero complaints. Exactly the kind of food I needed for healing!

After talking about food, it seems like a natural progression to move on to the topic of elimination! Dr. Berli does not require a bowel prep before Stage 1, but by Day 3 I wished I’d done one. In the month before I surgery, I altered my diet in preparation. I avoided red meat, pork and poultry and stuck to fish and vegetarian meals. I didn’t eat dairy other than plain yogurt, and went low carb. The day before surgery, I stuck to fruit, soup and salad. I’m a daily pooper but getting up earlier than usual on surgery day threw my schedule off.

At about 5am on Day 3, I started having intense gas pains. It felt like knives in my abdomen. This was definitely the worst pain I experienced from surgery. I reported to the nurses that it was maxing out at 7 out of 10, where the previous max of surgery pain had been just a 4. I was offered Oxy but declined because I knew Oxy was the problem (and it doesn’t touch gas pain anyway.) After Day 2, I had no more Oxy or Dilaudid. (I think I had about 4-5 low doses of Oxy and 2 shots of Dilaudid in total.) I wanted off that stuff as quickly as possible and easily transitioned to Tylenol. By 8am, I asked for the big guns to deal with the gas pain: a suppository and an enema to follow a short time later. By noon, I was back to my old self and from then on my recovery accelerated a lot.

I gained total mental clarity by Day 4. I was allowed to stand up briefly and managed to do so without any dizziness. Otherwise, I wasn’t allowed to get out of bed so I was relegated to bed pans. On Day 5, I had the Foley catheter removed. I was allowed to get up again and managed sans-walker to shuffle to and use the bathroom. I still couldn’t wipe my own butt though. Bed pans and butt wipes are not fun but the reality of Phalloplasty simply requires you to let go of inhibitions! Day 5 is also when I had the wound vac removed from my donor site.

Day 6 was my discharge day. At 1pm, I was transported by stretcher (because I was not yet allowed to sit upright) and non-emergency ambulance to a nearby “skilled nursing facility” where I was to stay for the next 23 nights. (My stay was arranged by TransCareBC, not OHSU.) I lasted 30 hours there before getting rescued and brought back to OHSU. For reasons I can’t discuss, I’m going to skip over this part of my experience. All I’ll say is that if you come to OSHU for surgery from British Columbia, there will be no after care available. This means that patients need to stay with a friend or cover the costs of accommodations in Portland out-of-pocket, and this unfortunately limits who can access surgery at OHSU.

Interlude: My “Amazing” Heart

Several hours after I returned to OHSU, at around 1am, I was seen by Dr. Nick Esmonde and he asked if I was open to having an IV antibiotic administered because of a small area of redness on my penis. I agreed. The nurse slowly put the Ancef into my IV. It took about 2-3 minutes to complete the injection, then he briefly left the room. While he was gone, I felt a cold “swoosh” all across my chest and then what felt like a “dark hand” squeezing my heart. (That’s the imagery I recall.) At first, I thought this might be a common reaction to this antibiotic but when the nurse returned a couple of minutes later I asked about this and he said that it was not normal. A cardiac team arrived within minutes. They performed an EKG but had trouble getting results; there was some kind of interference. Throughout this, I remained calm and just closed my eyes, breathed deeply and recited a mantra. I really felt there was no need to worry and I was in good hands. The cardiac nurse reassured me and said, “You have an amazing heart!” As it turned out, the leg compression machine and air bed were both interfering with the EKG and had to be shut down. Then they got their readings and found one minor abnormality but the cardiologist on-call said it was nothing to worry about. My extremely stressful experience at the nursing facility was the likely cause. I wore a heart monitor for the next two days with unremarkable results.

My wife flew in two days later and I was again stretchered out of OHSU, this time to a nearby hotel. (After three stretcher/ambulance transports, I can say that paramedics rock!)

I should note that my stretcher transportation was arranged by my case worker at OHSU. When the OSHU pharmacy contacted me about my “insurance card,” something I don’t have being Canadian, I just referred them to my case worker. Having a case worker to deal with these logistics was another efficient way that OHSU made my hospital stay trouble-free.

Since My Release

My wife has provided loving after care. She’s done the wound care, helped with medication scheduling, cooked my meals, and taken care of logistics like shopping. She’s also taking time for herself, swimming, and doing yoga and tai chi. It’s not all about recovery; we’re having some fun too!

I’ve had one post-op appointment with Dr. Berli since my release from hospital and will see him again this week. Because I’m healing faster than I anticipated, I’ll be going home ahead of schedule.

My Healing Progress

Overall, my healing progress has been uneventful. Other than the burning sensation I felt on Day 1, my skin graft leg hasn’t caused any unmanageable pain and is healing well. The dressing naturally peeled off its final remaining piece at 19 days post-op.

My donor site is also doing great! The skin graft took perfectly and the wound is closed and dried out. In the first two weeks post-op, I left it undressed and unwrapped about 25% of the time. After this, I started leaving it undressed and unwrapped about 75% of the time. As one of my dear nurses said, “Air is good for healing.”

After two weeks, I also stopped needing my trekking pole, aka. cane, to walk or get up and down. I still use it out in public because it nicely distracts from the huge bulge (of Kerlix gauze) I have in my groin and keeps people cautious about bumping into me, but I don’t really need it.

Moving my right leg is getting easier with time. I can bend it to about 30°. My right knee is sore to touch. Because a nerve was taken from my thigh, the area above my knee will not fully regain touch sensation.

My Surgery Results

So far, I’m extremely happy with my Phalloplasty results and will not require any reduction liposuction. The size of my penis is exactly what I’d hoped for and in proportion with my body size. Dr. Berli is the only surgeon I consulted with who I felt could achieve this result for me.

ALT Phalloplasty pinch test
ALT Phalloplasty Pinch Test

To be a candidate for ALT Phalloplasty, patients need to have a low amount of sub-cutaneous fat in their thighs. This doesn’t mean a specific weight or BMI though; it’s about body habitus. I’m not skinny but I’m fit and as a cyclist I have muscular legs, and Dr. Berli thought I was a good candidate for this procedure. While I had low sub-cutaneous thigh fat going into surgery, this wasn’t the only reason why my results turned out so positively: Dr. Berli also took the time to thin the flap in areas where there were no nerves.

I will not be publishing photos of my results here or providing any other specifics about my results, but if you are scheduled for ALT Phalloplasty and would like more information, you can email me.

What’s Next?

I’m now waiting for a surgery date for Stage 2, which will take place around October-November of this year, depending on the availability of Dr. Berli and Dr. Sajadi, the urogynocologist. Stage 2 will include: vaginectomy (removal of lining), closure of canal and pelvic floor restoration, urethroplasty, scrotoplasty, perineoplasty, and burying of clitoris. Because I am pleased with the size of my penis, I won’t require any reduction liposuction which means that I can also have glansplasty in Stage 2. Provided I don’t require any repair surgeries, Stage 3 will only be insertion of testicular implants, a day surgery.

I’m staying mindful about the fact that I’m not out of the woods yet, and I still have two more surgeries to go, with Stage 2 being pretty intense. But so far, I’m very pleased with my healing progress and results, as well as my experience with Dr. Berli and OHSU.

I’m happy to answer questions for those considering Dr. Berli as well as those who are on the road to Phalloplasty, particularly ALT, with another surgeon. Please leave a comment below or if you’d prefer more privacy, you can email me (my email address can be found here.) Cheers!