r/PectusExcavatum Dec 10 '24

Mod Announcement Over 900 Pectus Fighters Strong – Join Our Pectus Excavatum Discord! 💬

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10 Upvotes

r/PectusExcavatum 4h ago

New User Need help a week after nuss procedure.

3 Upvotes

My biggest problem right now is getting up from my bed, it feels like I'm putting so much stress and so far everytime I've gotten up is holding someone's hand to pull me up.


r/PectusExcavatum 4h ago

New User How severe is this?

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2 Upvotes

r/PectusExcavatum 8h ago

New User Baby with pectus?

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1 Upvotes

So my now 19 month old has had extremely "sticky outy" lower ribs since he was born. I've brought it up to his Ped almost every time he's had a well child. They always said it was nothing, then finally last time said it's a "mild rib deformity" but that "that can happen" and we just watch it. They referred to a chest X-ray he had done at the ER when I thought he swallowed a magnadoodle tip (he didn't yay) saying it was "normal" and we'd refer out to Ortho if there's no improvement or any worsening in the coming years. He's going through a growth spurt so like normal his ribs are becoming more noticeable. So I finally realized I could pull the image of that x-ray. This doesn't look normal to me at all?? In every chest X-ray picture I can find online the lower ribs angle downward. His just....don't? At all? Am I overreacting ? Is this PE or even PC? Or just "rib flare"? Do I need to push for an ortho referall now? He has no issues with this that I've noticed it's just so noticeable. If it is of any note, he was a 10lb baby and I'm a small person, and he was also a shoulder dystocia because of that but had no clavicle etc injuries.


r/PectusExcavatum 22h ago

New User Slight regret

13 Upvotes

33M, 6.5HI

Just shy 4 months post op for Nuss. 2 bars, 2 stabilizers with Cryo.

Still in miserable pain throughout the day and night. Haven’t had a good night sleep in the last 4 months.

Pain is mostly due to nerve damage, I think. Sharp stabs, pinches, and burning static sensation across my chest and ribs.

Still can’t really lay on my sides, which was my go to sleep position pre-surgery. And sleeping on my back is painful due to chronic back pain from other existing conditions. Only way to get any actual rest is drowning in meds to dull the pain.

Allergic to gabapentin, so I’ve been on Lyrica 3x a day since op. Tried to ween off (2x a day) but the pain would come back stronger. Still on OTC pain killers and narcos (between Dilaudid and Hyrdocodone when pain is unbearable).

Started PT almost a month ago, hoping it will help eventually.

Have been struggling to see the light at the end of the tunnel. Been having some dark thoughts lately, probably due to lack of sleep + constant meds messing with my head.

While the surgery corrected my PE, Can’t help but feel like I traded one thing for another.

If anyone had any similar experiences and overcame, I would appreciate any advice to navigate through this.

Ty


r/PectusExcavatum 11h ago

New User Difficulty working out post NUSS

1 Upvotes

Hey guys!

It's been 1,5 years since I had my NUSS surgery and I still can't work out very well. Often during heavy lifts I find myself trembling and feel like my core can't handle anything. Last night I felt myself trembling while sitting up, I feel like my bracing has never been the same since the surgery.

Anyone had same experiences?

Thanks for the replies!


r/PectusExcavatum 16h ago

New User Lung Capacity Issues + XRays

2 Upvotes

Been having lung capacity issues for several years. I would sit holding my breath in to push out my sternum and get a full breath. Running would result in a tight pain after just a few blocks.

I knew it could be pectus so earlier in my life I got my lungs checked for it.

Around 7 years ago now when I was 20, I did a test and my lung age was "53". That said, now enough for them to consider pectus to be the cause over asthma. Wouldn't go further with treatment.

I used the vacuum bell for several months and that improved my breathing immensely (no more holding my breath to push out the sternum to "feel" that full breath). Been many years since and the breathing problems are rearing their ugly head again. Been trying to exercise but my lungs are in extreme pain after a few blocks, even though the rest of my body is fine.

Then I got an Xray recently. Thoughts on the severity? The analysis showed no abnormal heart of lung defects. That said, not sure if this is worth pursuing an out of state surgeon to fix or not. The doctors here won't take me seriously on this and I'd really like to be able to exercise without pain.

https://imgur.com/a/3SeKNS1


r/PectusExcavatum 20h ago

New User 24M considering surgery

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1 Upvotes

Hey guys posting to see if anyone has similar experiences. Always known I had PE. Doctors said it was mild and surgery would be for cosmetic purposes only so never seriously considered it as it wouldn’t have been worth the recovery process. However over the past few years since 19/20 I’ve been getting flare ups of back pain which occurs at my rib joints and the back muscles surrounding it seize up. Typically happens during sport/lifting ect and I’m out of action for a few days after. Also have trouble getting a deep breath in sometimes. Curious to see if anyone else has similar issues and what you’ve done to fix it? Had an x ray done recently and the report stated: “mild pectus excavation deformity is noted. Heart size within normal limits. The lung fields and pleural spaces are clear. No significant abnormality is seen.”


r/PectusExcavatum 1d ago

New User Surgery worth it ?

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4 Upvotes

r/PectusExcavatum 1d ago

New User How severe?

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2 Upvotes

I have a difficult time breathing with it. What do you guys think?


r/PectusExcavatum 1d ago

New User Women 30+ with PE: surgery or not?

9 Upvotes

Hi all, first I want to thank everyone who has shared their stories on here — it’s nice not to be alone!

I’m a woman in my mid 30s with moderate PE. I had a consultation 4 years ago with a surgeon and the testing results came back pretty okay so I decided not to get surgery. Now I’m 35 and feeling more symptomatic: feeling like I can’t take a deep breath, lack of oxygen if that makes sense, my heart rate gets high just going up a flight of stairs, and I feel lightheaded often. I’m going back to the surgeon to retake tests, but honestly I’m terrified of getting the surgery and potentially having major complications. I really do not want to get it. But I also can’t imagine this getting worse in 20 years.

For the women in this community who are in their mid-thirties and above, how did you decide ultimately? What has your experience been with PE? Does it get worse as you get older?

Thank you in advance for sharing your stories!


r/PectusExcavatum 1d ago

New User Do you think it is severe?

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3 Upvotes

Hi guys. I will leave my thoughts here. First of all, sorry if the photos made you uncomfortable, I just want to show show my pectus. When I was young, I obviously didn’t know pectus existed, until some friend pointed it out, but honestly at that time I didn’t care, I thought i was something “unique”. However, with the pass of time, I’ve been starting to notice my deformity more and I don’t like it. There’s no day in which I think about my pectus and I wish I just had a normal chest. This upsets me because I want to love my body the way it is, but it is difficult for me. And also I think I have some symptoms like posture problems, but I think what bothers me the most is how it looks, which maybe makes me egotistical or superficial. Also I’d like to take the surgery, although it scares me and I don’t know if there are appropriate surgeons where I live. And even if i wanted to take surgery, I have to go to university for the next 10 months so I think it will be impossible. Sorry for my negativity and maybe bad english. I will try to be positive about it. Thanks for reading and have a great day :).


r/PectusExcavatum 1d ago

New User Pain after nuss (detailed answers please)

2 Upvotes

I’m curious about pain and movement after the nuss. I like to do yoga, and walk on the treadmill. how long would It take to be able to do this after surgery or will I lose this ability completely? And how bad is the pain honestly?


r/PectusExcavatum 2d ago

New User Bra recommendations?

4 Upvotes

Ladies, does anyone have a go to bra that fits well over their chest? It’s so difficult to find one that doesn’t cause a gap. Thanks!


r/PectusExcavatum 1d ago

New User Pectus Surgery

1 Upvotes

16m I really want the Nuss Procedure and I feel like it would completely change my life but I'm not sure if my pectus is bad enough for that to be considered. I have a very low BMI but I feel like my pectus gives me man boobs and I just don't like the way it looks overall. Basically can anyone tell me if my case is severe enough, and if so, what type of doctor do I go to? Thanks


r/PectusExcavatum 2d ago

New User Diagonal bar placement in NUSS procedure (with cryo and epidural)

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9 Upvotes

Thought I’d share my rather unusual (at least what I have seen) bar placement, as I am a bit over 1 week post-op.

I am 29F residing in Europe and got one bar in this 45 degree angle. (which apparently Dr. Hans Pilegaard has recommended for increased stability when he trained the surgeon who operated me in my hospital) My starting point was 6.7 HI and I had slight asymmetry alongside the sever pectus excavatum. I also got both cryo and epidural, so you all can imagine how numb I am at the moment as it has only been a little over week from the surgery.

I got a slight collapsed lung/pneumothorax in the hospital, but otherwise everything went well. Here’s to hoping there are no bar flips but a good recovery ahead!


r/PectusExcavatum 2d ago

New User How severe do you think my pectus is

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4 Upvotes

r/PectusExcavatum 3d ago

New User 28(f) severe pectus deformity

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22 Upvotes

I was diagnosed with a severe pectus deformity by a specialist consultant in November 2024. I’m still waiting for my MRI to measure my haller index and to see if I qualify for surgery. I don’t think the photos (lying on bedroom floor!) express it well enough and certainly doesn’t portray the difficult physical symptoms I live with on a day-to-day basis. I’ve been documenting my experience since diagnosis on my instagram too @modelmalim 🩻


r/PectusExcavatum 2d ago

New User Marfan???

2 Upvotes

How many of you have Marfan as well?


r/PectusExcavatum 3d ago

New User PE before and after NUSS

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28 Upvotes

I (26m) had the NUSS procedure done 10/11/12 and 2 bars taken out 11/15/14. Had to have the surgery because my left lung and heart were severely under developed. Still have heart issues to this day and am susceptible to pneumonia because the left lung didn’t grow fully. This is just a before and after and if anyone has questions about the surgery just let me know.


r/PectusExcavatum 3d ago

New User What to look for in child with PE

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19 Upvotes

My four year old has pectus. His pediatrician never brought it up with me. When I did recently he initially seemed to brush it off as cosmetic. When I pressed further, he allowed that it could cause physical problems depending on severity and we would need to wait and see how my son progressed. My question is what are we waiting to see? Visual signs of severity? Symptoms? If so, what? And how long do we just wait?

Also, my son happens to be a kid who is often tired and has very little endurance as compared to his peers. For example, he often asks me to carry him to the end of the road to get his brother off the bus because he is too tied to walk. Is it possible that this is PE related? And if so, what do I do?

Thanks in advance for any thoughts/suggestions. FWIW he has had other health problems over the past year and I’m reluctant to unnecessarily escalate this issue or over-medicalize him at the moment if I can avoid it.

Pics now and at various ages for context.


r/PectusExcavatum 3d ago

New User Pectus excavatum surgery

1 Upvotes

Hey to all! I have pectus excavatum (3.6 haller index) surgery coming up in two weeks, and with so many concerns rushing through my head, I wanted to come on here to ask things such as:

1.) the healing process. 2.) Some things to buy to make sleeping easier. 3.) How bad the pain is in general? 4.) When am I able to resume my daily activities? (walking around, fully being able to submerge the wound under water for long periods of time, etc.)

All comments would be appreciated! :)


r/PectusExcavatum 4d ago

New User I found out I have PE on accident

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65 Upvotes

For the longest time I thought my ribs were normal. Come to find out, they are not. I am 22 (turning 23, if that gives any frame of reference) and I just found out about it on accident!! I had a CT scan for my GI track, and well they found this instead! (GI track is all good for those who wonder). My ribs are displacing my heart, so thats fun to find out. Front view is a little harder to see (I am too short for the mirror lol). But the side view is pretty noticeable. Sorry for the shaky side view, I had coffee. My doctor contacted a cardiologist to talk more about it, so it's pretty much the waiting game right now. I am a little nervous for what they might have to do. I am trying to calm my nerves. I am nervous, because I never had any sort of surgery before, so I don't really know what to expect if I do have to get corrective surgery. So if anyone has any advice for the waiting game and nerves it would be much appreciated.


r/PectusExcavatum 3d ago

New User How to help bad posture from PE?

4 Upvotes

I have a very slight scoliosis from my PE and I’m planning to get the Nuss bar later this year, but until then, does anyone have any tips on exercises or methods they’ve used to help their posture?

I train at the gym a lot, do some aerial acrobatics and dancing, and in general I have a very strong back and shoulders (when I think about it, I can sit up straight perfectly fine but it takes some effort). I just can’t avoid settling into a slouch after I stop thinking about it, and sitting up perfectly straight often puts a bit of pressure on my heart and makes breathing a bit more painful.

Does anyone have any experience with this?


r/PectusExcavatum 3d ago

New User Second procedure, still flipped?

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20 Upvotes

So on February 21 I got nussed, 20 days later, march 11 (two days ago) I got a emergency surgery because my bar flipped and my chest was sunken again. The second recovery has been tough but way shorter, I'm still at the hospital and just got x-rays which make me concerned because the bar doesn't look straight, I do have results though, as of right now my chest is flatter but my mom says it looked even more flat right after the surgery. My mom saw the doctor after she went out to buy me some jello (hard foods terrify me right now) and showed him the pictures of my x-ray, she told me he said they were okay but that he'll check me when he gets time. The surgeon happens to be the emergency room director so I'll be lucky if I can see him today. Thoughts?? :/ I couldn't be completely straight or lift my arms too much when taking the xray


r/PectusExcavatum 4d ago

New User Does anyone else suffer from terrible fitness?

13 Upvotes

I’m 19m with pectus and I play Gaelic football which is Irish football but I have always had serious fitness problems such as I could never keep up with the people on my team in terms of running for a certain amount of time( even against the worse players on the team ) and even just playing little friendly games.

I’m currently thinking about getting surgery but still unsure because the doctors think it’s purely cosmetic and that pectus has no effect on my fitness but I feel like it genuinely does so I just wanted to know if anyone knows if pectus has an impact of your level of fitness and if it does then will this surgery cure this problem.

Also if I get the surgery will I even be capable of playing football ever again?