Top Surgery: Tips and Advice

Some Pre, During, Post Surgery Advice I Wish I Had

Most of the emails I get from readers are about top surgery, specifically the process of getting it, how to go about it when you’re non-binary identified, (be it neutrois, genderqueer, agender, female, or unsure), how to look for the right surgeon, working through internal commotion as to whether getting surgery is the right step or not, and lastly, the nitty-gritty of what happens right before and right after. While I’ve addressed most of these in one way or another, I have yet to dole out any pre-during-after surgery advice to my past self. So here’s what it’d be.

Pre-surgery

I didn’t really get any instructions, aside from “don’t take ibuprofen (Advil, Motrin) or aspirin one or two weeks prior, since these are blood thinners.” Be as healthy as you can be, whatever that means to you. If you are an athletic person, you might opt to work out your upper body a little bit. Or if you are a smoker, you might consider cutting down.

A lot of people get a little obsessed with vitamins, supplements, special diets, working out, etc. In general I don’t think any lifestyle change is necessary. Focus instead on your travel arrangements, finances, clearing up your schedule, and making sure everything is ready, including you.

Week Before

Make a checklist. With the excitement of it all you are more likely than not to forget something. Do all of this a week before traveling begins.

Usually you get prescribed an antibiotic and some vicodin, try to buy these beforehand. Also, buy a laxative. I seriously wish somebody would have told me that part.

Gather all of your documentation, including medical, surgical, and financial paperwork, passports or ID cards, hotel information, traveling directions, schedules, phone numbers, whatever you think you might need. This one is super important. I apparently forgot to bring a Very Important and Essential paper to the hospital – namely, the bill showing their fee – and they were refusing to go through with the surgery until we waved the all-mighty credit card at them. Meanwhile I was half-naked in a hospital robe with two nurses sticking IVs into me. Not fun.

Day Before

The night before, lay everything out for the next day. Pack the bag of clothes you will take. Make sure your partner / companion / caretaker does the same for their bag, and that they include books or music (or whatever they will do while waiting for you), snacks, and that they charge their cell phone, gas up the car, check the checklist twice.

For clothing I recommend pants or pijamas, something very loose and comfortable; a button down shirt or a zip up hoodie, just something that you don’t have to put over your head; socks, especially warm ones if it’s winter; slippers or loafers – seriously, you do not have enough strength to shove your feet into tight sneakers, and you might be swollen enough that they don’t fit anyway.

Usually you need to fast 12 hours before, so have an early dinner and no food after if you have a morning surgery. And, you can drink water while fasting. I did not know this before, and was dehydrated enough the next day that they poked me 4 times before they could get any blood out of my veins. So, drink water. Addendum: You can drink water for a blood test, but you can’t drink ANY water before going under general anesthesia.

Day Of

The day of, you arrive at the hospital, get an IV drip, get wheeled off to the OR, go to sleep, then wake up. You do almost nothing, so just sit back and enjoy the ride.

Another very important thing is to tell the anesthesiologist to put anti-nausea in your drip, if you know or think this might be an issue for you, or just in case. My dad was chatting him up, so I didn’t have a chance to tell him, or he forgot if I did. So when I woke up I couldn’t stop throwing up the, and didn’t leave the hospital until they practically kicked us out at closing. So yeah, very important.

Triple check that the staff is aware of any allergies, medications, special needs, etc.

Be nice to the nurses, they will be taking care of you when you are helpless in a few hours.

Post Surgery Week

The first week was pretty much hellish for me, extremely draining both physically and emotionally. You should plan on being completely focused on recovery.

The first day or three are the worst. Count on sleeping through them as much as possible. The bandages will be excruciatingly tight, and might make it difficult to breathe comfortably or move or sleep (hence the Vicodin). Once they are off, the relief is immense, and the worst is over.

From there it’s all about drainage. You have two tubes sticking out of your sides, at the end of these tubes are bags pooling with blood. You need to empty the drains every few hours as they fill up, and measure how much blood you are collecting. Drains usually come out on day 5 to day 7, and when this happens you’ll notice a huge improvement in how you feel overall.

You basically spend your week alternating between the sofa, a recliner, or in my case, in a comfy bed surrounded by a pillow fort. So get lots of pillows. At first you can’t lift yourself up and you’ll need assistance, but after a day or two you can probably do this slowly yourself. You can’t really shower until the drains are out, but you can attempt an old-fashioned rub down with a wet towel. Having someone shampoo your hair can do wonders for your self-esteem.

If you can, try to get out a little around day 3 or 4 to avoid cabin fever. I didn’t have energy to read much, so I was watching TV and movies and sleeping a lot. Walk around a little every day, as it encourages blood flow, invigorates your body, and clears your mind.

Stock up on snacks for the week. I did not have much of an appetite for a day or two, so I was surviving on cranberry juice (had a weird craving for it), ginger ale, Gatorade, and some crackers. Fresh fruit helps too, like grapes or watermelon, yogurt, cereal, and chicken soup – you will pretty much want to eat whatever you eat when you have a really bad flu. It’s essential to eat in order to coat your stomach to take the antibiotics. It’s possible your appetite could be back to normal in a few hours too, just don’t overdo it.

Be on the lookout for emotional fluctuations, and be mindful of any signs of post surgery depression, increased anxiety, irregular moods. Don’t freak out if you’re freaking out – it’s actually quite normal. It’s a long and tough week, and you’ll need to give yourself time for things to settle.

And remember, it’s not as bad as it all sounds (mostly…). I was up and blogging after the first day, and I didn’t even have a quick same-day recovery like most people. You can then proudly say your first week is over.

Post Surgery Recovery

After 7 days, I was in a good enough shape to go to the airport and get on an airplane for a few hours. It takes another week to feel almost back to normal. I worked from home the second week on a light schedule, and made it into the office by the third. Of course, my work involves absolutely no physical activity other than typing (I guess carrying my laptop could qualify as strenuous).

You cannot lift your arms for a few weeks, about three or four. This means set up everything you need from the counter, drawers, pantry, tables, etc so you don’t have to reach for it. You also cannot lift anything heavier than 5-10 pounds or so.

Compression is important. I know, you’ve had surgery, shouldn’t this mean no more binding? Well, you need to keep draining the fluids to reduce the swelling and thus, you need to bind. Some surgeons recommend buying a special compression vest, but mine actually provided me with two ace bandages with velcro and said that was more than enough, and I have to agree. I found them quite comfortable, actually kind of a relief – a sort of security blanket. Because there’s nothing there to flatten, the compression isn’t as tight and bothersome as it was with actual binding. Just, whatever you use, please wash it when it gets stinky.

For four weeks the incisions should be covered with medical tape – any ordinary medical tape will do. I changed the tape weekly or when it started falling off, usually after showering since the tape was moist. During this time you are not supposed to slather on any ointments or creams, so save those for afterwards. On that subject, many people recommend cocoa butter or vitamin E for the scars, and there are plenty of special scar gels that promise to work wonders, but I personally found those counterproductive. The only thing that has worked and continues to work for me is silicone gel and silicone scar strips. The strips are expensive but they last long and are hassle free, so I do recommend them.

In theory you are able to resume all normal activity within 6 weeks, but for me that theory did not hold up. By about week 4 you’ll feel perfectly fine in general, but I sure wasn’t up for strenuous exercise yet. In fact, I waited until week 8 to slowly start ramping up again.

Listen to your body. I personally recommend being extra conservative with your recovery, as you only get one surgery and one chance to heal. Holding off on something for a few days is no big deal to you right now, and might make a big difference in the long run. But that’s just my style.

Any other Advice?

For those who have gone down this path, what would you recommend?

28 responses to “Top Surgery: Tips and Advice

    • Thanks for the commentary. While I tried making it general, everyone should expect a different experience, so it’s good to hear all the possiblities. It’s weird that each surgeon will give you totally different pre/post surgery instructions, which IMO goes to show it doesn’t matter all that much.

  1. I really wish someone had told me that anaesthesia is known to cause depression before I’d had my hysto. It would have made the whole experiance much easier to deal witih.

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  4. For your surgeon, since he’s in chicago, do you think he would take out of country patients? I’m from Canada and considering this procedure. I couldn’t find anything on the website about it.

  5. Hey Im nervous about the first days after top surgery since the bind is really tight as you said, can’t you suffocate and die In Your sleep?

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  7. I’ve got an appointment with a surgeon next week. I don’t know if I’ll do the surgery with him but it’s a step. As a terminally shy person I don’t want to flash the boobs any more than necessary. Is an examination on the first appointment likely? I’d prefer not to strip until I’m under anaesthetic on surgery day.

    Also I’m wondering if a catheter is commonly used for top surgery. I’ve only found one reference to it so far. I’d rather wear an adult diaper if incontinence is a concern in surgery.

    • A recumbent stationary bike at the gym might be OK. Try it very cautiously. A real bike on the road takes a lot of upper body muscle to control as I found when I suffered problems in both shoulders last autumn.

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  9. Thanks for writing this! I’m six days post-surgery and this has been immensely helpful!

    I was actually placed in a compression vest with an ace bandage overtop post surgery, and ended up having too much compression to where the drains left blisters in my sides from being pressed against my skin for the first 48 hrs. When I called my surgeon later she said it definitely would have been ok to loosen things. Lesson learned: don’t be afraid to call your surgeon if something doesn’t feel right, even if it seems small!

  10. Wow. Now I’ve clicked so many links, I’m pretty much just going through all of your top surgery posts… Interesting, and important info! You write it clearly and concisely and that’s great so people can read it in a sitting.

    • Wow, glad you are keeping up! Although you will not be the first to have combed through the entire archives, it is an honor reserved for the few. I wrote so many posts early on I probably don’t remember most of them. Good thing I wrote it down, I guess.

  11. I recently had the misfortune of having to under a pretty intense surgical procedure. I had to undergo some reconstructive surgery in order to correct a severe trauma. The whole process leading up to the surgery was traumatic for obvious reasons. I don’t want to go into too much detail but during my surgery, my team used a FAW blanket and it helped so much with my post surgical recovery. Here are some facts about the system http://www.fawfacts.com

    • The intense shivering I experienced after my top surgery was one thing that surprised me. I thought I’d read up on everything.

    • You’re probably going to have all kinds of odd sensations in your chest since many nerve endings were cut/damaged/relocated in the normal course of surgery. I wouldn’t say I felt “vibration” but I had altered sensation for over 8 months post-op. I’m a year post-op now and I don’t notice anything when I am not moving but there are still ‘different’ feelings when I press on my chest or stretch. It’s fading so I’m not worried.

  12. Do you have any ways that friends and family can be supportive? Ie; make food, send pillows, etc? I’m making a list to send out and trying to think of things that would be helpful pre and post surgery.

    • Perhaps having a rotating schedule of volunteers – the primary caretaker also gets tired! They can help run errands like going to the pharmacy, bring some food, or provide loving company. Your main limit is not being able to reach anything above your chest or carry things.

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