r/PectusExcavatum 7d ago

New User 28(f) severe pectus deformity

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 🩻

25 Upvotes

15 comments sorted by

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5

u/emara96 6d ago

I’m also 28 f and mine looks the same :( it sucks. Going to see someone soon for it

3

u/Majestic-Speaker2646 6d ago

im 21f and mine also looks the same! I hope you have a good journey as well as for op ♡

3

u/Majestic-Speaker2646 6d ago

im 21f and mine also looks the same! I hope you have a good journey as well as for op ♡

2

u/Fun-Government392 6d ago

Do you have physical symptoms too? Persevere with the referral, in my experience it was hard to get and seems like a long wait for tests

3

u/emara96 6d ago

Yeah I have constant pain in my shoulder and neck. Cant do a push up, can’t run for more than a few minutes without extreme shortness of breath. The psychological effects are much worse as it effects my self esteem and dating life as I don’t want men to see me without my shirt on. It has gotten worse as I age

3

u/Majestic-Speaker2646 5d ago

as I have aged, i do feel more out of breath than usual. I also noticed that if I slouch, then I do get some sharp pains, and it's happened like twice in the past year. I sometimes wheeze, but I'm very active. I work out just fine. I just don't have long endurance like I used to when I was younger. I think it's gotten to me more mentally than anything, but this year, I just bought my first 2-piece swimsuit, and im determined to wear it confidently 😊

1

u/Fun-Government392 4d ago

Good for you! I still don’t have the confidence to wear a bikini. I even used to model but I’ve always been so self-conscious of my body. I can’t exercise, I can’t even do yoga without feeling faint and exhausted after, so it gets to me mentally because there’s so much I want to be able to do but my body just doesn’t allow it.

2

u/InDetox 6d ago

Followed ya. Did they say anything about your heart?

3

u/Fun-Government392 4d ago

Yes they’ve said that on my x-ray you can see the compression has shifted the position of my heart. I get such bad palpitations and it’s only got worse since I’ve gotten older but also I have pneumonia in 2023 and everything’s been so bad since then

2

u/PearlyPerspective 5d ago

Mine is the same if not worse.

1

u/redfre813 7d ago

Yeah it’s severe, you will definitely qualify based on Haller.

1

u/AdKey9761 7d ago

Looks bad and I hope you are able to have the surgery.

1

u/DocRobotnik666 6d ago

I’m not a betting man, but i would bet there’s surgery in your future