Share Tweet hey cas, i was wondering if you ever got sensation back in your nipples after top surgery. in the last update i saw you mention it, you said you kinda had it but not if you touched the nipple directly, has anything changed since then? Anonymous Nope, absolutely nothing has changed! My nipples are pretty much useless. 😂/😭 [ my top surgery tag ]

Share Tweet Top surgery photos: 1037 days since top surgery, 504 days since revision surgery Content note: Frank talk about chest surgery, liposuction, and nipple sensation. ~ I recently had a pre-operative assessment, which means my second revision surgery might not be far off. It’s nearly 3 years since my first surgery, and nearly 1.5 years since the first revision surgery. During the first revision surgery they redid my scars in the hope that they would heal better the second time, and my scars were super-weird again - they start out healing small and thin, but then by 6 months they’re thick and red and itchy. That’s called hypertrophic scarring, and it’s pretty typical for someone with Ehlers-Danlos Syndrome (EDS), so I’m not surprised and there’s nothing the surgeon could have done differently, since I didn’t know at the time of the surgeries that I had EDS. Having said that, if you have EDS and you’re getting top surgery, tell your surgeon - there is guidance out there for surgeons performing surgery on patients with EDS that could help your scars in the long term. For folks who do have pretty bad scarring, my surgeon was able to inject some steroid stuff into the thicker parts of the scars, and that made them fade and flatten a bit and stop itching so much. She said they can only really do that if your scars are big enough. I’m glad that was an option for me because my scars were bothersome in the hot/red/sore/itchy department. It was just a tiny injection, which for some people is very painful, she told me. I could see a little bubble under the skin afterwards, and she put a tiny plaster (US: bandaid) to protect it. The right side of my chest is still a little indented. At the first revision surgery, where fat was taken from my hips to put into the indented area of my chest, the surgeon told me that it’s fairly common for this kind of situation to require 2 or 3 surgeries. So I wasn’t surprised when after the swelling had gone down a couple of months later my chest was still indented (but less so). At my second revision surgery she will again move some fat from my hips to the right side of my chest. Sensation is, very slowly, returning. The surgeon said that sensation usually returns when your nipple muscles start working - like, getting firmer when they’re cold. When she saw me for a post-op check-up about 6 months after the first surgery, she noted that my nipples were “working”, and if I didn’t have sensation by now I probably wouldn’t get any sensation back at all. I don’t know how to describe it, but sensation is returning, very slowly. The area around them has normal sensation as far as I can tell. If I poke my nipple through a t-shirt I can tell whether or not I’ve poked my nipple just based on nipple sensation. The way I describe this, and it’s probably inaccurate, is that I have proprioception in my nipples - I can feel when they are moved, and I can feel where they are on my body without touching them in a way that can’t be explained by just having gotten used to where they are on my body. Pinprick and scratch sensation is just about settling in on the very outside edge of my areolae. I think I have a little cold-sensing on my nipple itself. Having mostly numb nipples is really weird. I’m scared to scratch them when they’re itchy in case I accidentally hurt them. It feels like they’re not properly attached! The sensation returning is interesting - I get a very particular sharp ache in an area I’ve not felt anything for a long time, and I’m like “yessssssss my nipple hurts!!!!!!” And the next day it doesn’t hurt any more, and sensation is so subtly different that if I hadn’t had the pangs of ouch the day before I would never notice. Especially on my right nipple, pigment has faded a bit around where the stitches where. The surgeon said that could be tattooed during the next revision surgery, but I said I didn’t want her to. My left nipple is squishy and nice and normal, and my right nipple is on the indented side of my chest and still quite scar-tissuey. I’m thinking it’ll continue to soften over time. Let me tell you, picking the scabs on my nipples post-surgery was a VERY BAD PLAN DO NOT DO THAT. It’s given me some rough/tough skin on my right nipple, it affected pigment, and I’m not sure but it might also be the cause of the scar tissue inside my right nipple. I’m a compulsive skin-picker so I’m not gonna be too hard on myself but I feel like I should tell other people in case they can resist the urge! Do not pick your scabs, friends! It will affect your nipples forever! I can’t think of anything else, so - time for photos! Keep reading

Share Tweet Surgery day 690, revision surgery day 157 - EDS (Nearly 2 years since top surgery, and nearly 6 months since revision.) Well, sensation does seem to be returning to my nipples, but it is very slow. Scratch-sensation is starting to creep inward from the edges of my areolae, and I’m starting to feel what I think I would describe as proprioception in my nipples - I can feel where they are on my body without touching them, and it doesn’t feel so indescribably weird to moisturise them. It still feels pretty weird though. ;) And yeah, the scars are a lot thicker than they were 20 days post-revision, despite my chest not feeling stretched this time. But I think I’ve found an explanation: Ehlers-Danlos Syndrome (EDS), hypermobile type. EDS is a genetic condition involving faulty collagen. It involves hypermobile joints, POTS, and… scarring. (Specifically “cigarette paper” scars.) I fit so many of the symptoms and I get a lot of pain and have mobility issues because of it, so once I worked out a few weeks ago that this level of pain and discomfort aren’t normal I booked an appointment with my doctor. I now have a referral to a rheumatologist. There’s no cure for EDS, but there are pain meds and physio treatments available. Anyway, this all explains the extreme dodginess of my scarring. It might help you to know that if you don’t have EDS your scars are likely to be much more well-behaved than mine. :) Photo of today’s scars under the cut… Keep reading

Share Tweet Top surgery day 644, revision day 111 Over 1.5 years since top surgery, and around 4-ish months since revision surgery. Sensation is starting to return to my left nipple, I think?? A week or so ago I was excited because I noticed that I didn’t so much feel an absence where my nipple was. I also feel a tenderness when I poke my nipples generally. It’s not a good feeling, but it seems like sensation isn’t totally out of the question? And I now feel “scratch” skin sensation up to right next to my nipples, which I didn’t used to. So things are moving in the right direction! Nerves take a very long time to grow back, and mine are clearly taking longer than most - the surgeon said that nipple sensation usually returns with nipple muscle activity, and I’ve been getting perky nipples in the cold and when poking them for ages. Oh well. :/ I have started taking vegan omega oil tablets because I’m vegetarian, and the first thing I noticed was that after a week of taking them my skin and hair felt amazing. I’m hoping that having a source of this oil in my diet will help my nerves regrow? I have no idea if it works like that. In terms of hypertrophy, my newer horizontal incisions are raised and tender. My hopes that my scars wouldn’t be hypertrophic if they weren’t stretched as after the revision surgery have turned out to be wrong. Sad times, but it’s fine, because the older hypertrophic scars are so much paler, flatter, and more faded. It’s great to see them side-by-side on my chest, because it’s proof to chronoceptively-impaired me that things will get better over time. I’ve drawn on the pics to show you what I mean. Anyway, I’m moisturising daily when I can, and it’s the massage that is the important part of that, says the surgeon. It helps break down scar tissue. Keep reading

Share Tweet Post-revision day 77 That’s about 2.5 months, and 610 days since the original double mastectomy. Two days ago was my 8-week post-op check-up. It was less than five minutes, and it was fine. The surgeon asked how my recovery was this time around, and I said it was a lot better - everything felt less stretched so it was less painful. Then they asked to see my scars, and they didn’t seem concerned about how raised and red they were. They commented that my nipples had good muscular stuff going on - they were not just flat and squishy, but changing shape according to temperature and my own movements. They said that sensation usually returns with muscles healing like that, and were surprised when I said that I can feel firm pressure but not much else. They noted that my chest seems much more even/symmetrical now, after filling out the right side with some fat from my hip, and they were pleased with the middle of my chest - the inner end of each scar was adjusted to flatten it out a bit. So, under the cut, a photo of my chest 75 days after the double mastectomy, and today, 77 days after revision. It doesn’t look that different in the photos, but it feels different - much reduced spare areolae, right side less indented, and my nipples feel and look more… nippular. Keep reading

Share Tweet 46 days post revision surgery A photo of healing progress. :) The smaller bruise on my right hip has still not disappeared completely - there’s a grey shadow. How odd! The incision scars on my chest are starting to flatten out, and get a little wider. I’m not sure when to start thinking that they might be hypertrophic again so I’m trying not to think about it too much. Maybe I should go back through the photo archive and see what it was like the first time around, find out with hindsight when it first became clear that the scars were hypertrophic. On the plus side, anyone who saw my chest before revision surgery and then after has been like WHOA THAT’S SO MUCH BETTER! And my nerves around my nipples are still growing back, because I sometimes get weird sensation-returning pains and pressure-feelings. Photo under the cut, but with unflattering lighting. ;) Keep reading

Share Tweet Top revision surgery day 23 - skin all healed Today my skin is completely healed - no dry bits, no scabs, no annoying stitches poking out - so I’m back onto moisturising lots to help the scars heal small. Plus things feel a little lumpy where they added the fat on the right side of my chest, so it can’t hurt to massage that a bit, right?

Share Tweet Top revision surgery day 20 Hip lipo bruises have faded a lot and hurt a lot less, but they’re still tender and grey shadows. I’m pretty much back to normal with sleeping, though a little stiff in the hip-regions. Chest is doing good - the only scabs left now are where some stitches still haven’t dissolved and are sticking out and causing irritation. They’ll go eventually though! I can still feel some stitches under my skin in some places. Once those last two tiny scars are gone I’m going to start moisturising again. The swelling on the right side of my chest (where they put the fat in) has settled a lot, and there’s a slight indent still but it’s much less noticeable than before. My nipples are a little stretched but I can live with that. ;) Everything still feels a lot less stretched than after the first surgery, so I remain hopeful that hypertrophy will not be a problem (or it’ll be a smaller problem maybe!). Keep reading

Share Tweet Top revision surgery day 13 - almost back to normal? Most of the glue has come off now, and the incisions are almost closed. As the surgeon said it would, the fat that was put into the indentation on the right side of my chest is settling and starting to look more indented again. (They said it might take a few tries to get it right.) Hopefully tomorrow I’ll be healed enough to start moisturising again, in the hope of having tidier scars this time around. Things do feel a lot less stretched than last time. I still get tired way more easily than usual, and I can sleep on my side but if I twist the wrong way in bed I get this horrible tearing pain in my hip (which is where they took the fat for my chest). But when I check it looks exactly the same! The bruising is fading fast. As per usual, photo under the cut. Keep reading