/r/PectusExcavatum

Photograph via snooOG

Welcome to our community for discussion of Pectus Excavatum! Talk about your personal experiences, ask for advice, discuss surgery options, meme about built-in cereal bowls, etc. Please note: We are not medical professionals. Any information shared here is for general informational purposes only and should not be considered medical advice. Always consult with a qualified healthcare provider for personalized medical guidance.

A place for all to discuss Pectus Excavatum whether you have the condition or are just interested, this subreddit has it all. You can post images of the condition, experiences with having it, have a talk with other people who have the condition, discuss surgery and much more.

/r/PectusExcavatum

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0

What are the chances of death? Really scared and it dosent seem like theres much info on it

Done a lot of research, only thing i can find is a study that said 13/50 000 died.

Another was a article from ssome chinese doctors that said they had heard it was about 50 deaths from 50 000 surgeries and that the deaths are not always published

7 Comments
2024/05/11
16:55 UTC

3 Comments
2024/05/11
10:31 UTC

1

Question about gym

Hi guys! I was watching a story of a guy who has PE, where he says that in the gym he focused on his lower chest for too long, which made his PE look worse... Then he started focusing more on his upper chest and his PE practically "disappeared"! Can anyone tell me if "the key to success" is to train the upper part more than the lower?

2 Comments
2024/05/11
02:03 UTC

54

We made it guys 😁

3 years later and it's out!

22 Comments
2024/05/11
01:27 UTC

2

Sleeping post op

I'm currently 4 months post op...I'm trying to not sleep on my sides for at LEAST 6 months to avoid any complications (recommended by my surgeon) and also additional pain.

The only way I've been able to sleep through the whole night without waking up with immense back pain is with a pillow wedge...and I put some thin pillows on top of that.

But I'm going to be vacationing somewhere in a couple weeks and I can't bring my whole pillow setup with me. So I've been testing out just sleeping flat on my back. I put something under my knees and also a thin pillow or blanket under my low back (which is where I get all my pain). I last until 5am then I wake up in horrible pain.

Is it possible to just lie flat on your back comfortably and for an entire night? I could never lie on one side the entire night...I would roll back and forth. So I don't get how a person can just stay flat on their back in the same position the entire night.

Am I missing something here??

9 Comments
2024/05/10
22:49 UTC

3

How long until I can work out/ swim/kayak

I’m 16 with HI of 6.3 and surgery is may 23rd when can I expect to be able to start some exercises like swimming and light workouts? I’m not having cryo

7 Comments
2024/05/10
15:48 UTC

7

How are you 30+ doing without any operation?

I was a binge drinker in my 20s, but the last couple of years Ive gotten heart palpations. My lower back has been getting worse from anterior pelvic tilt and I cannot stand for a hour before it starts hurting. I now gym daily, but the fatigue is definitely there where I am gasping for air after a set of heavy lifting.

How has your health developed for you 30+ that didnt get any operation? I wasnt planning on getting an operation, but fatigue is affecting my energy and attention span/focus at work.

14 Comments
2024/05/10
07:37 UTC

1

Follow-Up Not pectus but high haller

I posted a few days ago about how my thoracic doctor in person said I was normal (CT normal) but on doctors notes said I have a greater than 3.5 Haller on inhale. I spoke on the phone today and he confirmed I do not have any chest wall deformity or bone structure issues. He said he measures anyways as habit and mine was very high because my chest is long and narrow. He said there is no surgery in all his study to find a normal shaped but narrow chest (as the bones being moved would cause protrusion and misalignment). I asked if he thinks the narrowness would cause my fatigue and exercise issues and he said probably not but he doesn’t know anything specific. He didn’t want to give me a referral and no other doctors seem To see any issues. I’m just shocked and want to know if anyone else has been through this and what their next steps were? Does anyone have a narrow chest without a deformity?

9 Comments
2024/05/10
00:23 UTC

2

Should I be concerned that my bars are more visible through my skin after 8 weeks?

When I lift my arms up, I can clearly see the outline of all 3 bars at the sides of my chest. Around 5 weeks I could barely see 2. Is it just more visible because swelling went down?

5 Comments
2024/05/09
22:41 UTC

1

Anyone here 20 years old that uses a vacuum bell for it to work?

that's all i wanna know. if you have asymmetrical pectus, even better.

5 Comments
2024/05/09
04:14 UTC

1

Rib brace

Do you guys recommend rib brace? My skin at the side of the ribs is really bad and almost to the flesh, but It really helps my rib flare

2 Comments
2024/05/09
00:50 UTC

11

To those on the cusp of needing surgery, did you do it and was it worth it?

M35 - I just finished all my tests at the Mayo Clinic with Dr J and her staff. She was super helpful, knowledgeable and up front.

My tests came back that I am right on the cusp of needing surgery so it’s a decision I would need to make. My haller was a 2.9 but my corrective index was 30%. ECG, pulmonary and echo all looked normal but my exercise tolerance and ability for my heart to deliver oxygen to my lungs was 70% of normal under load.

Obviously it’s no one’s decision but mine to determine if need surgery or not but to those who were on the edge of needing surgery and did go through with it could you share your experience?

Some high level pros and cons Pros for me:

  • increased exercise tolerance
  • cosmetic reasons (a big one for me)
  • less chest pains and palpitations

Cons:

  • Recovery
  • I’m big on golf and lifting weights and could be 6+ months to be able to even swing and my game will probably be way worse
  • possibly permanent loss of feeling in areas of chest where bars are installed
  • obvious risks of surgery (although Dr J is amongst the best of the best)
17 Comments
2024/05/08
23:33 UTC

5

27M with PE. Can this be improved with the vacuum bell? Exercise? Looking for options.

34 Comments
2024/05/08
21:21 UTC

1

How can i fix the assymetric muscle insertion?

5 Comments
2024/05/08
20:47 UTC

2

Denver Pectus Doc

Hello- Not looking for a surgeon but a good primary care doc that is knowledgeable in pectus just for monitoring and upkeep as well as potential future referral to surgeon. Any help appreciated! Thanks.

1 Comment
2024/05/08
18:08 UTC

1

Questions to ask a surgeon to find out if she is a good one?

Getting nuss done in July and im thinking about contacting then again for another conversation because the first one was too rushed and it was a year ago.

She kinda gave me some red flags last time, she didnt know what a vacuum bell was and said two bars hurt more than one.

28 Comments
2024/05/08
16:25 UTC

2

Big Problem with my chest insertions

hi, I was in the hospital today because you have a check-up appointment after a year, when you did your pectus excavatum op. In any case, the doctor told me that my insertions start far outside my chest and that's why small holes are created in my chest, one on the left, one on the right. I'm really depressed because I can never get rid of it and pictures from Google of it look bad. Can anyone give me advice or does anyone have this same chest gap

4 Comments
2024/05/08
11:53 UTC

2

Red acne-like dots post surgery

I'm 4 months post op and I have a bunch of acne-like red dots all over my chest, centered around my middle chest incision (I had a combination of ravitch/ Nuss so I had a vertical incision down the middle of my chest).

Interestingly there are no red dots around my side incisions where the bars were put in.

Anyone else have anything like this happen before? I've had some of these red dots since getting that surgery but it seems like they may have increased over the past month or so. Wondering if it's a reaction to the surgery trauma or nerves being cut through or something.

In the back of my mind I'm nervous that I'm allergic to some of the hardware since I'm allergic to Nickel and other types of metal, but they used titanium bars.

Just want to know if anyone else has had something like this.

3 Comments
2024/05/08
05:34 UTC

1

Thoughts?

I’m pretty positive I have pectus excavatum, but i wanted thoughts on if you would classify it as mild or moderate and ways that y’all have improved your posture / gain muscle

4 Comments
2024/05/08
05:05 UTC

1

Post-surgery depression and expectations

Hi all! I am 25(F) with a Haller index 3.9 and right ventricular compression. I am strongly considering surgery as I have a lot of unpleasant symptoms associated with my pectus excavatum. I was warned by a family member that there is a strong risk for severe depression following thoracic surgeries and was wondering if anyone could share what their recovery experience was like. Thanks!

7 Comments
2024/05/08
04:53 UTC

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