Getting Top Surgery When You Have Sensory Processing Issues: A Narrative Experience

This post is for all my autistic, ADHD, and neurodiverse folks who have sensory processing and/or touch sensitivities that can drive you absolutely all the way up the wall, over it, and then crash and burn on the other side who are looking at top surgery because good goddamn those boobs just need to go the fuck away already but what are you getting into really?

And if you're like me and your chest, shoulders and upper arms are particularly problematic areas where you just notice everything all the time always well, then this post is definitely for you.

I'm currently two weeks post-op, so I'm in the thick of it in terms of just what it means to lose feeling in your chest following top surgery. I had double incision top surgery with nipple grafts, though the risks of loss of feeling and all that come with most forms of top surgery because, well, it's major surgery, someone is cutting into you and taking tissue out and things happen to bodies when you do that. I am not a doctor, but I am a neurodiverse person who just had top surgery and because of my brain's unrelenting need to be 100% aware of what is happening on every inch of my skin at all times, the changes have been noticeable, weird, and what I expected while being not at all what I expected.

In my initial consultation, where I brought 12 pages of my own research and 2 pages of questions, my very wonderful, kind, and graceful surgeon explained to me that with top surgery I would lose feeling in my chest following the surgery and the loss of feeling could potentially be permanent. It could also come back in some places but not others. I would have functionless nipples that may never feel anything ever again, provided the graft took and they didn't fall off. (The chances of them falling off I think were 10% or less, higher if you don't follow instructions for post-surgery nipple care. If you care about your nipples, follow those instructions. If you really care about your nipples, consider a different type of top surgery that reduces those chances. The idea of running around with either one or zero nipples only mustered humor in me. I'm not particularly attached to my nipples, nor have I ever derived sexual pleasure from another person touching them, so my only consideration was aesthetics and aesthetically speaking, nipples aren't important to me.) 

You're telling me that after top surgery, which will already come with tremendous mental relief and the accompanying joy which has been the most joy I have felt since Mass Effect 3 came out, I might not feel anything ever again in one area of my body where feeling things is at times horrible, distracting, overwhelming, and has resulted in meltdowns? SIGN ME UP.

Here's where I wasn't prepared. You still feel everything underneath. The disconnect was and is disconcerting. Also, feeling nothing on the surface area of my chest feels an awful lot like "cold", and perhaps that was just the best way my brain, who is so used to cataloguing all the different sensations on ever square inch of my body, was capable of classifying feeling. "Sensory reports from the chest indicate complete LOS on sensation. Categorize as cold." 

My chest felt cold for the first week and three days following my top surgery. One week and four days I started regaining some measure of feeling in some areas, which feels oddly bizarre in different ways because there's a general feeling of... static? Imagine an old TV, if you're old enough to remember that out-of-signal TV's didn't always generate blue screens, with the white-out static and translate that to a physical sensation in your body, and that is what I feel. Particularly in my nipples, which is less than thrilling and also accompanied by a buzzing sort of tingling, but which I hope is resulting from the graft "taking". Two weeks and three days post-op, I would categorize the feeling in my chest as extraordinarily similar to the feeling of my left arm after I got a tattoo. After each little burst of applying ink, the tattoo artist wipes your skin with a cloth. It's not rough, but it's also not soft and honestly the worst part of getting the tattoo was that damned cloth touching my skin every 5 to 15 seconds. In any case, when your skin has been overly rubbed in one spot for hours and everything is screaming "STOP TOUCHING ME" but the rubbing continues for a fair bit of time after that? That is how my chest currently feels.

The compression binder has helped a lot by giving me something else to focus on, and by keeping the skin still and making it so other things are not moving over my skin. My chest still feels like static as feeling returns to it, and my religion of avoiding over-stimulating the skin on my chest has become absolute since sensation started returning (but not everywhere - those parts still feel cold). The pressure of the binder is reassuring and quiets the static. That said, for the first seven days I hated the compression binder because I had drains and contrary to the suggestion that "I wouldn't notice them" I very much noticed the tubes being squeezed against my skin under my compression binder, not to mention the lumps of gauze.

Most of everything I feel on my chest still feels sub-surface level and that disconnect is still disconcerting. But as the distance closes, it lessens. Feeling has returned to the top of my chest, near my clavicle and along my sternum (mostly) which has much reduced the shock of drinking cold beverages.

All the research I could find, those 12 pages of notes I brought with me to my consultation, and none of it talked about the sensations after surgery in relation to sensory processing issues. I thought this was a travesty. So to recap the highlights in a succinct list:

1. First 10 days, my chest felt cold. Drinking cold beverages was particularly rough, hot beverages were all I wanted, and my first hot shower after the drains were removed on the 7th day and I was finally allowed to shower again was the best shower of the entire fucking year.
2. The 11th day through this day (now 17 days post surgery), as sensation has started to return, my chest feels like static, at times still cold, and certainly overwhelmed by all sensations. Hot showers at night help reset me for a bit, but it's weird feeling the heat beneath my skin but not on my skin. Most feeling is still sub-surface level.
3. The drains were not bad at all to manage, though the tubes in my body were bothersome. The compression binder was also on really tight for the first 7 days to hold everything in place, and that resulted in my ribs feelings absolutely violated. Heat packs on my back were great, as were massages. I also slept on 7 pillows at night, having fashioned them into a reclining sleeper to make sleeping comfortable and elevate my chest as instructed.
4. Once the drains were removed on the 7th day and I could shower again and remove the (new) compression binder I was given, I have showered every night. I also adjust the compression binder throughout the day for my comfort, which is a balancing act between wanting everything absolutely still and also wanting complete and utter relief from being squeezed. When I remove the binder, I sit in reclining positions and don't do anything more strenuous than hold my switch up so I can play animal crossing. I also take longer showers than I typically do on non-hair washing days, because the heat feels good on my back and my ribs love not being squeezed.

I console myself in all of this with the knowledge that once my four weeks are up, I will never have to wear a binder again for the rest of my life. This is the extinction burst and it will pop in two weeks when I go to my one-month post-op. 

Hopefully by then there will be a little less static and skin overwhelm. I plan on writing about it to share my experiences so hopefully it helps even just one person have a bit more knowledge heading into top surgery and what to maybe expect if you have any type of sensory issues.