8 Weeks Post-Op RFF Phallo

{Surgery Dates: Stage 1 = 2/4/16, Glansplasty = 2/19/16}

{Surgeons: Dr Curtis Crane, Dr Bauback Safa, & Bunke Micro Team}

{Locations: California Pacific Medical Center = 2/4/16, Greenbrae Surgery Center = 2/19/16}

GENERAL: The biggest news I have to update about is that I’ll be returning to work on Monday. Surgery was 2/4 and I’ll be returning to work on 4/4, just 2 months post-op!!! Had I absolutely needed to, I suppose I could have return at 6 weeks, but it would have been pushing it. And as it turned out I came down with a fever and I was feeling pretty ill a little over a week ago, so I’m really glad that I’ve had the time to take easing back into my routine, at a pace that feels calm and right to me. A big part of me is already brainstorming picking up a second job to be saving for stage two and plans for moving out of state once surgery stuff is taken care of. However, I’m trying to be mindful that my body is STILL HEALING and not get too over eager with filling my schedule. I haven’t even returned to my main full-time employment yet and here I am looking for a second job. Today I made an agreement that I would give myself at least one month back at work before considering adding on a second employment responsibility. I suppose it’s kinda my MO to work more than is healthy, and in unsustainable ways. Earlier today I was thinking about how I busted my ass in the lead up to this surgery for the sole reason of affording surgery yes, but also to be able to take the time that I needed to heal and rest from working constantly. In the year prior to surgery, I spread myself really thin and self-care practices went by the wayside in order to achieve financial goals to make all this possible. Now, instead of using my free time to take on another job, more than ever I feel like it’s important for me to resume those practices in the forms I’m capable of  in order to aide in a deeper healing as my body slowly gets back to 100%. No Bikram yoga or distance running just yet, eventually though.  It’s been really hard to be in this new form that’s so much more comfortable, finally feeling much more mobile than I was even a couple weeks ago, and keeping myself from going out and doing everything too fast!!! I keep looking at the calendar and thinking back to what I was feeling like at the beginning of this month. I had just arrived back home from California, I had my SP catheter in, my arm looked pretty gnarly, and I was still kinda shuffling around and walking a bit like a cowboy. Somehow I keep forgetting that was this month, THIS MONTH!! Things really can and often do improve quicker than you anticipate, but it was often really hard to see the big picture in the moment. A practice I would have utilized going back in time would have been to write down one thing each day that I wasn’t able to do the day before – or one thing that I noticed improved with my health. It can be really challenging to see the full scope of massive, but slow healing and changes taking place when you’re oozing blood, and knee deep in xeroform, catheters, and covered in hundreds of stitches. But it’s happening, and the pain really is temporary even when it doesn’t seem to be.

HAND THERAPY: Ok, so I was seeing a hand therapist and I wasn’t all that impressed with my care so I cancelled my sessions with her. The folks I saw out in California who were familiar with free flaps and grafts were very well informed. I highly suggest squeezing in 2-3 appointments while you’re in the area, they can even be contacts for whomever you end up seeing once you get back home. The person I was seeing locally just didn’t impress me and was completely inexperienced with grafts. Also, I mentioned it to her twice but she had long nails and when she was massaging my scars, her nails were scratching me and leaving bright red marks on my skin. No thanks… I’m no stranger to O.T. as I’ve had multiple surgeries on both wrists. I also felt like I knew more about graft care than she did, as she admitted that she rarely worked with grafts and never any this large. So I was continuously making suggestions about heating methods, stretching techniques/exercises, and specific “tools” to use to help with adhesion. All that being said, as of last week I started just doing my own thing at home to continue rehabbing my hand/wrist. I might pursue another therapist in the area, or I may not.

I wanted to share a photo of the “torture device” that the folks at Hand Therapy of Berkley and El Cerrito made for me. I was experiencing severe hypersensitivity along the backside of my thumb and hand and exposure therapy is often times all you can do to calm it down – that and time. So this stick has a bunch of different textures that I was given to rub on the hypersensitive areas as much as I could stand… Sounds like fun, eh??!

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And yes, you’d be correct in guessing that the two in the middle are Velcro. Not a fun sensation, I tell ya – it did work though! Honestly, I didn’t use this device all that many times, but I constantly rubbed fabric on, tapped my fingers, and massaged the hypersensitive areas as much as I could stand and eventually it faded into being hardly noticeable to the point that I totally forgot that it was ever an issue. It is still slightly there, but not much. Now I mostly just have a pretty sensitive nerve running along the radial side of my wrist. It can be downright painful if I’m not gentle with it. I’m hoping with time that that also calms down. I truly can’t imagine being tattooed there given the sensations I feel when just massaging lotion into that spot. It can spike to a pain rating of an 8 or 9 when triggered.

This is Dycem. It’s essentially a non-slip product. It’s used for all sorts of things from opening jars, to coating slippery surfaces to guard against falls. But they also use it in O.T. to help release adhesions that the body forms with the existence of scar tissue .

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As the scar tissue develops, it wants to adhere and grow onto the tissue below/around it, whereas regular healthy skin typically glides quite freely over the structures below/around it. The Dycem can be placed over the scar and you can press and gently but firmly and continuously work at tugging/moving the scar and encouraging it to let go of the tissue that it’s adhered to. The earlier you begin this practice (even with regular massage and no Dycem) the better. The longer you wait, the more the tissue has grown and adhered, the thicker it will be and the longer it will take to release it. I certainly have a lot of adhesion along my wrist which is why it’s taking LOTS of effort to get mobility back there. I also had quite a bit of adhesion along the bend of the elbow where the leash incision is. For many weeks it was very painful to even attempt to fully extend my arm and reaching out to the side with a fully extended arm was even harder and impossible for quite some time early on.

Another really cool tool you can use to help release adhesion is called the Extractor:Extractor.jpgIt’s actually a tool used to extract venoms and poisons from animal/insect bites/stings. I used to work in wilderness where there was a very high population of rattlesnakes and copperheads – we never carried these kits because they really don’t work for that. However, it IS a great way to more aggressively release adhesion over just utilizing massage alone. It uses suction which is helpful because it literally pulls the scar tissue up and away from the adhesion. Over time I’ve seen scars fully release and the skin is much more mobile. So if you’re having trouble, you might request this at your O.T. appointment or invest in your own for around $15. –> Extractor Pump Kit by Sawyer on Amazon

In terms of strengthening my hand, I did purchase a $10 Gripmaster (there is a name brand one called Digiflex, but they’re both the same thing), which is specifically for both digit and full grip strength. It can work the whole hand at once or individual fingers and comes in a handful of strengths. It’s suggested to use at lower tensions and to do more repetitions rather than going for the highest tension you are capable of and doing far fewer reps. I purchased the 5lb per finger model.

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DONOR SITE: My graft is doing well. My wrist is still tight because of the adhesions in that area, but I am seeing improvement with my continued stretches. pray-hand.jpgMy wrist is still pretty locked with the scar tissue, so while I will often use the “prayer position” stretch (see photo), as well as just manually flexing my wrist back and forth, I find that placing my hands flat on a counter or down on my yoga mat and using my body weight to slowly progress the stretch is easier. There was a time when I couldn’t stand and place my hand flat on a table because my wrist just wouldn’t flex. So it’s nice to know it is getting better, it’s just going to be a lengthy process for me.

 

SCAR CARE: I ordered a sheet of silicone a few weeks back and I had been using it fairly diligently. Although it’s been comfortable, I haven’t really noticed much difference in the flattening of some of the most prominent ridges along my graft, especially where the two grafts were sewn together. So I ordered this Silipos 3×10 Gel Tubing Sleeve that Olga at CPMC recommended I get, and after just a few hours, my graft had noticeably flattened!

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The sleeve is quite long. I was hoping to be able to cut it in half and get two sleeves out of it, but there’s no way that it would have covered the entire graft had I done that. So I trimmed off 2 in. of it and it fits great. The inside is silicone and the outside is a soft fabric:

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It’s very snug and getting it on can be a challenge. My method is to turn it completely inside out, slide it just to the wrist crease, then pull it down over itself and back to right side out. Another option if it’s too tight is to cut it open and then use velcro to reclose it allowing easier application and a more catered fit for larger sized forearms. However, the reason I think I’m seeing results with this so much quicker is because this is offering the compression that the silicone patch alone didn’t have. It doesn’t look like it so much from directly above:

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But from this angle I can clearly see how flat the ridge became, it was like a mountain peak just hours earlier. I will say that once I took the sleeve off for a few hours, I did notice the ridge returning some, but I think continued use even over the next 1-2 weeks is really going to yield amazing results, as the expensive silicone sheet that I had been using didn’t have this kind of effect even after WEEKS of use. Maybe if I had always been wearing a compression sleeve over it, it would have helped more. I’ll be sure to update on this.

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The one thing that I did notice with this silicone sleeve is that because there is no hand compression and the sleeve is also pressing down on the bridge where the only drainage from the hand exists and thereby slowing/limiting fluid from moving away from the hand, that I did have a bit more swelling in my hand. I mostly noticed the swelling in it when I was moderately to heavily using my arm. So I started using the Isotoner “compression glove” in tandem with the Silipos sleeve when I notice my hand getting more puffy.

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PERINEUM: My v-nectomy site is still having issues closing. One week ago (03/17/16) I had an appointment with a urogynecologist in the Boston area. Yeah, yeah, it wasn’t ideal, and it was awkward initially to be walking into an area where people are receiving very gendered care, but I knew it was the place where I could see someone who does this specific procedure, and it was worth it to me to endure a little embarrassment and dysphoria in order to have a specialist look at my wound in person rather than just sending Crane photos. I had no signs of infection, but I wanted confirmation via a culture and a second opinion about the wound. It is still the same size as it has been for many weeks now, it hasn’t gotten any smaller, it’s still a little wider than the size of a Q-tip head and I can stick about 2/3 of the cotton tip into the hole. Granted, because this is a hole, the healing does take place from the inside out, slowly filling in. So healing rates can also be really hard to determine. Crane’s instructions when I left Cali were to keep it clean and dry. So I had been using a squeezy perineum bottle to wash and thoroughly rinse and dry the wound a couple times per day. FullSizeRender-3.jpgBut still it was continuing to exude fluids and was staying more wet than dry. For peace of mind I just wanted to have a specialist start following me in the instance that I needed or decided to have this closed surgically i.e. “primary intention” rather than waiting for it to close on it’s own, also called “secondary intention”. Either way, I need to wait 3-4 months. It will likely take that long to heal on it’s own, and even if it doesn’t, they wouldn’t go in to surgically close it until at least that much time has past since my initial surgery. So either way it’s a waiting game. The good news is I was instructed to start packing the hole. I say “good news” because now I feel like I’m doing something proactive to aide in its closure, whereas before I was just washing it with soap and water and patting it dry.

PACKING A WOUND: I had heard of guys needing to pack wounds before but I really didn’t know what this consisted of. Were they using regular gauze? Did they dip it in some kind of solution or medicated formula before packing??? I had no idea. So I thought I’d give you the lowdown on wound packing, or at least what I’m doing these days to pack mine. I guess I haven’t quite ditched the “packer” swag yet. :O) Depending on your wound size and how exudative it is, you may need to do something completely different, so check with your provider for personalized medical care and instructions. This is just to give you an idea of what the process can be like.

Here’s my little setup: Small handheld mirror, Q-tips, Tweezers, Scissors, and 1/4″x 15′ Iodoform packing strip. The Iodoform packing material smells VERY strong, like a hospital.

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I say packing STRIP, singular, because it’s just one long continuous strip and you simply cut off what you need. It takes about 1.5 – 2 inches of this tiny gauze to fill the hole. I trim off a piece and use a Q-tip to press about a centimeter of the gauze in at a time. Then you just leave a short tail on it for easy removal once it’s completely soaked and needs to be repacked hours later. And voila!

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I really wanted to give props to and pass along this surgeon’s name because he was more than kind to me. Even though he was booked up for many weeks out, their office was incredibly accommodating and squeezed me in within 2 days of calling and explaining my situation. It can be really challenging to find good care, or even just subpar care where you aren’t having awkward interactions with every single healthcare “professional” that knows your trans status. But Dr Roger Lefevre, his phone and front desk office personnel, and his physician’s assistant/nurse definitely gave me 5-star care at Beth Israel Deaconess Medical Center in Boston, and I made a sure at the end of my appointment with him to take the time personally thank him and his staff for their kindness and professionalism. I was treated like a regular human being seeking medical attention, as I should have been, but unfortunately that’s still an all too rare experience in most places. If you’re in the Boston area and need any follow-up care regarding your v-nectomy site, I’d highly recommend this gentleman. The office location IS in an OB/GYN wing, so that’s something to consider. You might feel more comfortable bringing a woman with you so it looks as though you’re there as her support. But at no point did anyone tell me I was in the wrong place, question my gender, or even make a hint of a weird face about me being there, and I’ve been on Testosterone for well over 10 yrs now. So while I was internally very uncomfortable entering and checking into a women’s area, externally I wasn’t being treated awkwardly and I really didn’t notice any patients looking at me funny either. For all they know there could be another treating physician unrelated to OB/GYN care in that wing. I think most people are focused on their own stuff and didn’t see anything odd about my presence… Ultimately I feel confident knowing that if I need to seek surgical intervention to close this site in a few months, he is a geographically close and viable option and willing to help.

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SCROTUM: I actually meant to mention this in my previous entries but forgot. About 2 or 3 weeks ago I was looking my scrotum over with a mirror and noticed that I have an area along the far ends of an incision that runs horizontal across my scrotum that is like a little pocket. One side is a sizeable pocket and the other side is really practically not there at all, about 75% smaller. Sorry, this is kind of gross, but I’m just going to be honest because I had never heard of this experience and I’m all about transparency through this process and I think the more information that is available, the more easily you can be on the lookout for things that could potentially arise in your own medical process. Also, the more people hear about varied experiences, the less likely they are to feel alone if/when it happens to them… So, the pocket when I found it hadn’t been washed since my surgery (like 5-6 weeks earlier) so it essentially had a HUGE buildup of smegma in it. I didn’t even realize the pocket existed until I pressed down and around the edge of the end of my incision and the pocket kind of turned inside out. What the inside looks like is there is some slightly sebaceous tissues within a pocket-like formation. It seems to be the skin that transitions from the outside of the labia majora to the inside where the skin is thinner and more moist and hair free. It’s that thinner moist-ish tissue (I know that because both the sensation and visual matches that of that exact same tissue pre-op) that is inside this weird little “pocket”. It’s gotta go!!! I can bury most of the cotton part of a Q-tip into this pocket. It just feels dirty and like it’s an area begging for infection. In the meantime I’ve been soaping it up and using the squeezy bottle to spray water in there to totally rinse it out. And I’ve also use Q-tips to clean it. I’m not into Q-tipping this ball-pocket indefinitely. So I’m looking at a scrotal revision to get remove it and possibly a small v-nectomy revision to close the small wound if it isn’t closed by 3 months. Because of also needing the scrotal revision, it’s likely that I’ll pursue having both of those issues addressed in New York, either by Dr Nikolavsky or Dr Zhao. I know both are in my network, but I haven’t yet reached out to either of them – it’s on my to do list. I’m hoping that I can get the revision out of the way sometime in May, or the latest, April. I suppose I could wait till October when I have my stage 2 done, but given the way my body reacted to the initial scrotoplasty (severe bruising, swelling, and developing an eschar) I’m worried that trying to revise my scrotum AND place implants might result in, or at very least unnecessarily heighten my risk of extrusion occurring. I feel more comfortable with staging this revision many months away from implant placement so that I have plenty of time to heal.

I think that’s all for now. Not really much new info to report on the other wound sites. I’ll save photos till there is a more noticeable progression in healing.

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