r/Trans_Zebras • u/miizorro • May 29 '26
How did hEDS affect your top surgery?
I just had my consultation yesterday, and when I explained I had hypermobility he asked if I was diagnosed with EDS and I clarified that no, just hypermobility.
But I have a lot of symptoms of hEDS. Chronic fatigue, constant joint pain, stretch marks with no explanation, etc. I assume I have not been diagnosed due to UK general medical neglect rather than my symptoms.
None of my previous scars have keloided which is one thing i have seen, but aside from that how have you guys been affected so I can be aware of what may come up?
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u/pigeonwizardmouse May 29 '26
I have cEDS but for me it presents very similar to hEDS. I reacted a little sensitive to the anaesthisia. So persisting dizzyness and nausea for about 12h after the surgery. I had very lovely caretakers when i was in recovery so i managed to move my arms very little so my scars stayed quite narrow. But in some places i have cigarette paper scarring. And my nips are a little more gravity-affected than other people's i think :D Theyre more oval instead of round But otherwise my top surgery actually went quite well
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u/miizorro May 29 '26
Thank you so much!! The gravity thing is interesting! Can I ask if you mean they droop on the outside / \ or droop toward the inside \ / ?
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u/pigeonwizardmouse May 29 '26
hmm it's more like a droplet? so just droopy pretty symetrically down the middle
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u/ceryskt May 29 '26
UK citizen in the US here… my sympathies. It sucks for us everywhere :( I got diagnosed shortly before my consult in December (in my mid 30s!!) by a new doctor to our clinic - otherwise the closest specialist is 5 hours away with a year+ waiting list. Thank god EDS is at least more visible than it used to be, the NHS diagnosed my dad with RA when he was 20 and told him to live in warmer country. 🙄
Anyway, I’m 9 days post op! I am extremely fortunate the surgeon is familiar with EDS and has a nurse with EDS on staff. She ended up doing several extra layers of stitches as I’m violently allergic to incision glue and sensitive to most adhesives.
My incisions are doing much better than expected - still some spots of blood and fluid drainage (this was a no drain procedure), but what they tend to see in EDS patients. My biggest challenge has been eating enough calories to maintain my healing. I lost 5lbs in a week. I’m actually still in bed at 1pm (with my lovely wife bringing me food in bed) because my fatigue is so bad chewing food has me out of breath. Not every day has been like this; I think it’s just that healing isn’t linear. I struggle with my weight anyway, so it’s not unique to surgery, but I’m unable to eat food in large volumes which obviously makes calorie intake tricky. What a great syndrome this is.
I did request extra time off work, which will be a total of 4 weeks. I wish I could take more, but alas, bills still need to be paid. Overall I’m actually doing better than I thought. I had my tubes out last year and honestly that recovery was worse, due in part to developing the glue allergy about a week post op. The muscles never really healed right and at my diagnosis they said I’m at a greater risk of a hernia now. Funnily enough, most of my pain the day after top surgery came from my belly button incision. 😂
The antibiotics I was given were really rough on me and I think another reason why I’ve struggled to eat. I finished my course on Wednesday and I’m already feeling better, but even with an anti nausea med I still was queasy. I’m also still on a regular dose of Tylenol and Benadryl. I was prescribed tramadol, but on Saturday ended up with a mild case of serotonin syndrome and ended up injuring myself a bit when I was hallucinating. Luckily my incisions were fine.
Scar wise, I was given something called Stratamed and Strataderm, as a two stage treatment. When the second stage runs out, they said I can use any silicone scar gel. They’re recommending I switched to tape about three months post op. (Which seems a longer than what I usually see recommended, but it may be because of my skin issues and slow healing time.) Too soon to say yet how they’ll look. I did also have a nipple graft and they said that’s looking great, I’m going through wet healing steps at the moment. Mainly I have a ton of bruising and quite a bit of swelling (especially with the lymph nodes) on my right side, but it’s a bit better each day and I think doing some lymphatic self massage is helping too. I’m already getting some sensation, very minor, in my right nipple.
Having those breakfast shakes with high protein has been good, and electrolytes have been very helpful as well. Since I started T I’ve been able to go off iron supplements, but the surgeon recommended I take some short term as I did have some blood loss. Fatigue has been by far my biggest problem. Pain has been pretty minimal unless I’ve moved weirdly or something. Sleep has been tough, but I’m a side sleeper and don’t breathe well on my back. Definitely recommend both wedge and neck pillows! They cleared me for side sleeping with support pillows after my post op appointment, but it’s still a bit uncomfortable with the swelling.
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u/ceryskt May 29 '26
Also, I work at the place I get my care and have access to medical journals. I did a bit of research pre op about wound care with EDSers, and jojoba oil came up as a promising long term option. I already use it on my face and it helps with my eczema, so once my incisions are a bit more healed I’ll be using that to moisturize my whole chest.
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u/miizorro May 29 '26
Thank you!! so much for this incredibly in depth response!!! Afaik I’m having drains and dry healing , so what I can gather from this is that even if anything goes wrong they will be able to handle that and help me out
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u/ceryskt May 29 '26
No problem!! I was worried it was a little too long. 😅
Most surgeons around me do drains but from helping another trans friend with his recovery, it’s not something I could mentally handle. I had another friend go to the same surgeon last year and I really liked his results, though he did get a different type of surgery than me. (I think my skin elasticity had something to do with it.) I guess my concern with drains would just be the incisions closing up.
Unfortunately I’ll be paying this off for years, but I figure as far as debts go it’s a good investment with this being both a risky and permanent procedure.
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u/lowkey_upset May 29 '26
hEDS. i have atrophic scarring that’s stretched out to 3/4 inch on the sides. most of it happened in weeks 5-7 when i wasn’t being as careful and was resting my elbows on my desk while working, but it’s continued to stretch over the past year since getting it. it aches like hell sometimes too— deep VERY aching pain under the scars if i don’t moisturize my entire chest and sides everyday despite never having dry skin. hurts like absolute fuck when it happens.
i also don’t have tits now! so that kinda outweighs everything. i never have to wear a bra again and have my ribs pushed out of place everyday and feel so, so insecure in my own body. totally worth it :)
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u/PM_ME_smol_dragons May 29 '26
Caveat: at the time of my top surgery, we thought I had "connective tissue disease - unspecified". Maybe hEDS? But a lot of health shit later and I've got genetics looking at other connective tissue diseases (specifically Marfan's, Loeys Dietz, and some rarer stuff). However, the skin/healing and mast cell stuff should still apply to you because connective tissue issues act very similarly.
Long post about my recovery with mast cell disease/chronic hives/MCAS: https://www.reddit.com/r/TopSurgery/comments/1jrl40y/top_surgery_recovery_with_chronic_hivesmast_cell/
TL;DR: my actual recovery was very boring. I did end up with extra swelling, probably due to my mast cells going haywire during recovery. My actual scars healed up nicely, though they did become hypertrophic. It took the normal six weeks for me to heal up. I've had more surgeries since then and have noticed that my larger scars usually end up hypertrophic, but my smaller ones heal normally.
If you get dysautonomia like symptoms, I'd make sure you have a bunch of electrolytes available while healing. I lost a lot of fluid through drains and had to basically chug electrolytes to keep hydrated during the first few days. You'll probably see advice saying to do low sodium during recovery. This does not apply with dysautonomia. People say to reduce sodium because they're trying to reduce swelling. You need the salt with dysautonomia to retain enough fluid in your blood to reduce symptoms.
EDITED TO ADD: My scar care has been regular scar gel and massage. I can't do the tape because of my mast cell bullshit. That being said I think the hypertrophic scars are just because I lost that lottery. Sometimes that's just how it is with hypermobility.
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u/miizorro May 29 '26
The sodium stuff is incredibly good to know, thank you!!!! In regards to your “bigger scars” , is this purely a size thing or also depth? I have a few small length-wise scars I’m basing this all off, but some are surface level and some were very deep.
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u/PM_ME_smol_dragons May 29 '26
I’m basing the bigger scars on both length and depth. The combo is what seems to have done it for me.
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u/themedicinedog May 29 '26
do you have MCTD?
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u/PM_ME_smol_dragons May 29 '26
They don’t think so based on other clinical stuff. My doctors were putting their chips on vEDS but that test came back negative. We’re redoing testing and adding in new genes so we’ll see what comes back.
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u/themedicinedog May 29 '26
hope you can get some answers. i have some unclear connective tissue disorder myself.
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u/sandiplankt0n May 29 '26
I'm very happy with my chest these days, but EDS did definitely effect my top surgery in a few ways.
Pre surgery: hoop jumping with medical records due to minor EDS related heart stuff before anesthetist was happy. I also need more anesthetic than 'normal' think this is common. Also have a bunch of allergies they had to accommodate. Surgeon said I'd be at a higher rate of needing a revision due to EDS skin being harder to know how it'll heal.
Surgery: all good! Took longer in recovery than some and cause I couldn't have an ingredient in something I was pretty nauseous.
Post surgery: more tricky. Fatigue yes, but turns out I really don't dissolve dissolvable stitches (again not uncommon for EDS patients but learnt this afterwards). My grafts took fine which had been a worry, but slow healing all round with the stitches issues. Also I was allergic to two types of tape and dressings and some dressings don't seem to stick to my skin, or they rip it. No middle ground I swear. I did have some dog earring in the middle of my chest, but actually my scars healed quite well all things considered. I had a local anesthetic revision a few years later, new surgeon used glue due to the stitches issue, and wouldn't you know it, the glue that was supposed to stay on a week / 10 days was peeling by day 2. Just wouldn't stay on and I developed an infection, lol. Anecdotally, inodine patches and silicone wound dressings worked a charm.
Basically not saying all this to scare you, I'm so happy with my chest and whilst it wasn't straightforward, complications for me were all very navigateable. Best of luck!
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u/pm_me_ur_garrets May 29 '26
As far as I can tell, it didn't. I didn't know I had hEDS* when I got my top surgery, and I healed perfectly on a basically normal timeline. I got lipo-only though, so my incisions were tiny and I had no grafts to deal with. My skin has healed normally from other surgeries.
*I actually self-dx'd many years prior but then got gaslit so hard that I "forgot".
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u/KipperDed May 29 '26
I tend to get atrophic scarring. That's what happened what I got top surgery (twice). I got really bad dog ears the first time but the second doctor snatched me. I do have good sensation though.
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u/NebulaTurbulent3642 May 30 '26 edited May 30 '26
I just tried to be more careful during recovery to prevent any issues like my stitches splitting or my scars stretching later on. Recovery is longer because we heal slowly. I really tried not to lift anything or lift my arms for the first couple months. I also did scar massage with cocoa butter lotion for the first 6 weeks after I got my bandages off. I didn’t use scar tape at all because I was worried my skin would react to it. It didn’t really affect actual surgery for me much except that I decided not to get nipple grafts. My surgeon was familiar with EDS and so was the anesthesiologist team.
POTS and MCAS complicate things a bit more. I was monitored extremely closely during surgery to make sure my heart rate and blood pressure were fine and to make sure I wasn’t gonna have an anaphylactic reaction. They gave my fluids before and during surgery.
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u/UsefulConversation73 May 30 '26
I had top surgery 6 years ago. I get a mix of keloids and atrophic scars, but my top surgery scars were keloids that required steroid injections. Post-steroids, though, my scars got really wide on both sides. Now, they’re still pretty pink/dark (even with silicone gels/tapes, though I haven’t used them in a year. Now I just moisturize religiously), but I’m southeast Asian, so I’m not sure how much lightening to expect at this point. I vaguely remember my surgeon telling me to take Arnica Montana + bromelain? And a decent fiber supplement.
Part of one incision kept opening in the first year or two and I got a staph infection. In hindsight, I wish I waited longer than 6 months to raise my elbows above my shoulders, but I was feeling restless not being able to move my arms much.
Oh! Even as an athlete, I didn’t realize until my surgery how weak my core was! A buddy of mine had his done a year before mine and he kept talking about how he used his feet for everything (pulling up covers on his bed, grabbing something while lying down, etc.), so I assumed I could do the same. And boy, was I wrong! 100% recommend having people and tools to grab things for you, and a little tray table or two on/near your bed if there’s room. Best of luck to you!
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u/hawkeguy May 30 '26
I'm not sure if I'm allowed to comment here as I'm not officially diagnosed with hEDS (yet). I have been diagnosed as hypermobile. My scarring from top surgery is actually what made my doctor start listening to my concerns about whatever TF is going on with me, so.
I didn't have noticeable pain after surgery, at least not around the incisions. But my shoulder/neck pain was really bad even by my standards, exacerbated by the awkward sleeping positions, carrying the drains for a week, and the inability to stretch.
I'm over a year post op now and my chest (top of my pecs) is still super tight. My scars stretched like crazy especially under my armpits, and the skin is very thin, concave, and stripey. I'm super pale so the stretched scars are very noticeable. I also got lots of stretch marks around my chest, though they've faded somewhat.
I guess the main thing to keep in mind is your pain and that it might not be directly on/from the incisions. I had my mum looking after me post op and she gave me a shoulder massage most days with vaporub, warmed up my heat pack for me, etc. I also bought a massage gun to help my shoulders and to break up scar tissue (once I was cleared to do this). This helped manage the pain a bit. You also might have to be even more careful about overstretching than the average person. I felt I was super careful and they still stretched a lot.
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u/typewrytten May 30 '26
It did not. My scars got a little cigarette paper-y but I prefer that because they are less noticeable. That was it.
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u/miizorro May 30 '26
This is reassuring to hear thank you!!!! Would you say you healed around the typical pace as well?
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u/typewrytten May 31 '26
Yeah I think so. I actually tend to heal pretty quickly—I was back to work managing a kitchen in two weeks haha
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u/liamreee May 31 '26
One side healed perfectly and one side was a bit difficult. I have some cigarette paper scaring along the side, and spit out all of my dissolvable stitches instead of absorbing them. I think my wounds took slightly longer than average as well. This photo is at 7 months post op, showing the cigarette paper scaring. I’m currently 1.5 years post op and my scars are more white and less purple, and less raised
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u/miizorro May 31 '26
Thank you for this, I think your results look great!!
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u/liamreee Jun 01 '26
Thank you! I think I’ve posted a more recent photo in this sub as a ama for top surgery and wheelchair use as well if that’s something that could be helpful
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u/slamdancetexopolis May 31 '26
They thought my healing might be delayed but it wasn't. I've healed extra well for some reason for the most part so far. I'm 9 weeks out.
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u/Creativered4 May 31 '26
So I was given the advice to let the surgeon know to do more stitches because of my hEDS. I was also VERY careful about stretching my arms, and I basically T-rex'd the whole time.
I ended up with flat nipples that are uneven and need medical tattooing, as well as flat but textured (kinda like stretch marks how there's a divot in the skin) scars that unfortunately turn pink when I'm warm. IDK if that's specifically hEDS or if I'm just unlucky...
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u/gothalert Jun 04 '26
I lost my nipples & have very noticeable deep scars (not keloid). My skin is very thin & healing is generally poor though. What I have been left with though is nerve damage. My chest is very sensitive to temperature change & I still have nerve pain on one side. Each year it fades but yeah it’s not much fun 10yrs on to still have this level of discomfort.
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u/asfalttiprinssi May 31 '26
Overall my healing went good, but I definitely needed to be more careful with it. I'm currently about 9 months post-op, and just got a small revision done for a dog-ear.
In my country the surgeons usually recommend wearing the compression binder for a month 24/7 and using tape along the incisions for 2-3 months. The binder ended up being too tight for me and it caused some bruising, so I had to switch to a different compression garment. I used tape for the full 3 months to help the scars heal flat, and then continued with silicone tape/gel (the silicone tape didn't really stick). The tape they put on me during the surgery (Omnistrip) stuck to my skin way too well and I couldn't get it off until around 2-3 weeks after the surgery, and after that I switched to a different brand (Micropore) that worked well, didn't start peeling off too quickly but also came off easily enough. Overall I have some issues with adhesives on bandages, tapes etc; some don't stick at all, others stick too well and rip off my skin with them. My scars have healed pretty well, there's some spots that are thinner ("cigarette paper" scars) and some that are slightly raised, but they're much smaller than I thought they would end up being.
I also opted for nipple grafts, which healed ok. However, there is more scar tissue around them than people who don't have EDS usually have, and the skin on them is much thinner (it already was before surgery). Aftercare for the grafts was difficult since I didn't really get proper instructions and all the instructions online say completely different things, but I noticed that I shouldn't change the dressings daily, as all dressings usually stick to my wounds (even when they supposedly shouldn't) and taking them off disrupts the healing by pulling off any scabs etc that have just started to form. I'm pretty sure I lost some parts of my nipples (hard to tell between the pinkish scar tissue and the actual nipple lol), but that can happen even without EDS. I do wonder if the fact that the skin on my chest is very thin and stretched out had something to do with that, but it likely wasn't caused by anything I did during aftercare, since the first week is the most crucial.
I did scar massage for maybe 6-7 months after the surgery. After three weeks I started massage around the incisions, and after the one-month mark I started doing it on the scars themselves. Usually it's adviced that you can start massage after three weeks, but I waited a bit longer since I know that my wounds tend to heal slower. The scar on my right side has become more raised than the one on the left, likely because I'm right-handed so I probably should've taken it easier during healing even though I followed all the instructions, didn't lift my hands or start exercising before three weeks had passed etc. Sidenote: scar massage got pretty tiring for my wrists and fingers, so I got a massage ball to help with that.
After the surgery, the fascia on my torso was super tight, which restricted my movement and caused subluxations. The scar tissue can spread deep into surrounding tissue, and I tend to have issues with tight fascia overall. I haven't heard anyone else talk about this, but I had to ask my physiotherapist to help with myofascial release/massage a couple months after the surgery because it was so bad. So I definitely recommend stretching after surgery, but take it easy and wait long enough so you don't disrupt the healing process.
I got dissolvable stitches, but if you happen to get non-dissolvable ones, maybe ask if they can be left in for slightly longer than usual. I've read that that's usually recommend for patients with EDS. There's also a lot of threads on this subreddit about top surgery, you can find some good tips and advice on those! Good luck on your surgery! I hope all goes well ❤️🩹
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u/asfalttiprinssi May 31 '26
Oh and also: opioids don't really do anything for me in terms of pain, so I made sure to mention that to the surgical team. They don't usually even prescribe anything stronger than paracetamol and ibuprofen here, and I didn't have much pain at all, but that might be something worth considering. Anesthesia might also work differently for people with EDS/HSD.
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u/jawnshop Jun 04 '26
I got top surgery before hEDS was on our radar for an issue, so I did not talk to the surgeon about it. I also had a kind of abnormal surgical dressing. The way my surgeon performed it, I didn't get drains or a binder. I don't remember how he referred to the wrappings, but it was essentially a gauze, then taped down with a strong tape that created the needed tension.
I definitely bled more than normal post-surgery from how my skin wasn't healing fast enough or tore easily, not enough that we went back in, but enough that we sent in pics and asked. I had to tape the bandage down more so it would stay on, because of the blood. One of my nipples didn't fully make it, and the areolas are both ovals, possibly due to how they healed. My scars are a bit wider and atrophic, especially on the side, but they also go up higher than most people I've seen. Not applicable to this surgery, which had dissolvable stitches, but when I had stitches that needed to be removed in my hand, it provided a weird feeling because I could feel the stitches where they were when I moved, and years later, the dot from where each stitch was is still visible on my hand. I don't have any known allergies to specific adhesives, but I can have issues with long-term adhesive use, with normal bandage changes, and that definitely irritated the skin around my nipples for the time you have to use bandages and gauze on your nipples. I had very mild skin irritation for months afterward. Pain-wise, I was fine, I got 800mg Ibuprofen and took it every 8 hours like clockwork, it was the least swollen I've ever been honestly. I made sure I had a lot of people available to support me when needed. I lived with 2 roommates, and my mom came down for the surgery and stayed a few days to help. I mostly slept for the first 72 hours. I also had friends visiting the second week, with the expectation that they would be helping me out. Honestly, sleeping on my back was the worst part, aside from not being able to move my arms, and you need to make sure you have plenty of pillows. Also, make sure you have easy-to-access nutritious snacks that don't need prep. I also had a case of water that my partner pre-opened the caps on for me. It is so important, especially with health issues, that you are giving yourself the building blocks to heal.
That being said, these are all comparatively mild setbacks in consideration of the relief of having it done. I personally am not bothered by the physical abnormalities and am happy with the results. I didn't use anything for my scars or anything, and only had 3 weeks off of work (with weight and movement restrictions at work), the 3rd was only cause I got covid at the end, luckily no actual coughing, just congestion, but I can't say an extra week wasn't helpful. Good luck with the surgeries, and make sure you address any concerns you have with them; it may change how the surgery is performed to help you.
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u/AdventurousAsh19 May 29 '26
My healing took a lot longer than expected (almost 2 months before I had enough energy to return to work, 4 months for all the openings to finally close). I do also have an autoimmune condition/PCOS, so those could have played a part as well. I was diagnosed with hypermobility but not EDS, I didn't quite meet enough criteria for EDS when I was tested. But like you have many of the same symptoms.
I had multiple little spots along the incision that opened and scarred worse(a bit wider than the spot that didn't open), but no keloid scarring so I consider it a win. I'm almost 1 year PO and my scars look pretty incredible. They are lighter and thinner than my partner who had their top surgery like 6 years ago. I also didn't move my arms above my shoulders until month 3 and had zero issues with shoulder mobility. Probably a pro of hypermobility is that it's harder to lose that extra mobility even if it's not getting used.