IAmA male a 32yr male with pectus excavatum, and had surgery to repair the issue. The surgery has failed and I've been living with the outcome for 12 years. AMA

What is your favourite food ?

Chicken nuggets and chocolate frosties

Dip for the nuggets ?

Honey

Yes I like that nickname but do you dip them in the frosty or no?

I haven't, but I do dip french fries into my frosty.

The proof photos don't load.

Here is an alternative: http://www.zencircle.com/story/T4DOlujdxN

interestingly, the original pictures are now loading (didnt work on mobile), and the one you just posted is dead. lol

Really? It's working for me on several devices. Did you try alternate devices? Edit: typing errors.

Hi,

Thanks for doing the AMA. I'm a medical doctor so thanks for sharing. I've personally never come across pectus excavatum it's one of those things I've read about but haven't see. A couple questions:

1) Do you have any more surgeries planned for the future?

2) What are some of the main restrictions you have because of the condition (activity wise)?

3) Cheeky question: Do you ever get asked to come and help out as a patient actor for OSCE stations for medical students or doctors?

1) Yes. Actually, I'm in the process of being tested for Marfan Syndrome. I met with my primary today, and I'm being referred to Cardio.

2) No physical limitations, but that may change after I have my next meeting. I do have asthma as well.

3) I have never been asked to do that. Also, check out the link above. That is my actual surgery. A case study was done on me, and those photos are of me.

I too have pectus excavatum and Marfan Syndrome (26 y/o M who has had a double valve replacement). Feel free to PM if you need someone to talk to.

Thank you. It's nice not to be a lone

If it turns out to be a Marfan Syndrome, there is quite a community out there. Don't hesitate to contact them. I myself have it (32/m) and the pictures of your your chest could easily be mistaken for mine...

Maybe we are related... haha.

But no, seriously, it's nice not to be alone.

When were you first diagnosed with Marfan? I can not believe how long it has taken for me. I fit all the symptoms, yet my wife was the only one to notice. I lived at the Colorado children's hospital for almost a year.

I just had this surgery last fall! Now you've got me spooked.. do they know what caused your chest to go back to the way it was? Or what caused the surgery not to work?

They are currently investigating. Most like has to do with the Marfan syndrome.

I had this surgery done 16 years ago. No reversion has taken place. Unlike OP, I do not have Marfan's.

I'm really glad it worked for you. Was it a huge improvement? How long has it been?

Me too! I had mine in January but it wasn't a complete correction :S. The bottom half is still sunken from my sternum not being long enough to support a full correction. Now I'm worried the odds are stacked against me.

That completely sucks. What have they recommended?

Not much unfortunately. My surgeon did what he could and knew that my chest would regress if they attempted a full fix, so they stuck with the goal to relieve the pressure on my heart. He was fantastic and well practiced in the technique. I think it's the best it could be, and as far as I can tell an improvement for my health (finally getting around to having that looked into - fingers crossed). The hard part is accepting it, as I was invested in the full cosmetic fix too. It hurts to hear of someone else having trouble with this stuff. If I could give any helpful perspective, is that this doesn't have to effect how we feel about ourselves and we're stronger for going through the process. I'm hoping the best for ya!

I agree about the perspective on ourselves. Hopefully it'll be better the next time around.

What was the worst/least enjoyable part of your time in the hospital/during surgery?

The prep leading up to surgery, the catheter and the allergic reaction to the iodine cleanse.

:'( That sucks. Will it be better this time around?

Lol, I can only hope

Thanks for doing an AMA and sharing your story. What kinds of things can cause a two year olds chest to collapse?

My chest collapsed during an extreme asthma attack. During which, my right lung collapsed as well.

I thank god everyday for my mom. She had her hands full with me, and not mention was a single mother. I wouldn't be here today without her.

I have a pectus excavatum as well, though not as severe that it's pushing against my heart.

What were the biggest problems you were facing with this condition?

The biggest issue I faced was that it would have crushed my heart at 18, unless I had the surgery. The initial idea was that the doctors would cut the ribs and flip them. Luckily (or not so, since it failed), the bar was the option they chose.

Were you also physically have trouble with it?

Standing up straight, and laying flat

Wow. I'm 51 and have had it as far back as I can remember. Mine seems similarly deep but each doctor I've seen (for a variety of unrelated issues over the past years) has just written it off as a curiosity. I've always wondered how everything could fit in there with such a deep well.

If I place a ruler on my nipples (I'm sure there are plenty of jokes to throw in here) I get about two inches deep from the ruler to my chest.

But each time a Doctor notices they just say "Having trouble breathing?" "No." "You're good!"

The best of luck to you!

I would ask to be referred to a cardiologist. Yours may not be deep enough? Mine was almost 5 inches deep.

Do you know of anyone in your family that also has pectus excavatum?

I believe my father may have, but he died before I could meet him.

May have? So he could have had it, but if he did, it went undiagnosed?

I don't know, and I have no way of finding out.

Hey I also had surgery when I was 14 (I'm 27 now) because it was pushing down on my lungs. Couldn't run 1/4 a mile without wanting to die. I went to UCLA and had the ravich procedure done (I have a big upside-down Y-shaped scare on my chest). The cartilage never healed right, my chest still looks like crap, I get weird phantom pains/sounds/cracks from my sternum area every day and I feel like I forgot how to breathe correctly. Something in there just doesn't feel right and it feels like a matter of days before I twist my body in a weird way and it all collapses in on itself.

Trying to explain this to anyone goes nowhere and I'm not sure what to do. I've seen advancements in 3D printing take off and someone in China now has a 3D printed titanium chest/sternum so I'm kinda just waiting until I can walk into the hospital and get a brand new 3D printed rib cage. Just swap the whole thing out yall! Lol

Have you looked into following up and doing another reparative surgery and what that wouldn't entail?

I'm currently looking into it right now. Having a titanium sternum sounds pretty cool though. I always thought that having the ribs flipped sounded horrific.

Have you ever put any dips in your pectus excavatum to easily dip your chips while laying down? Additionally, have you ever used it for food play in the bedroom with a partner?

When I was about 13-15 I used to eat cereal out of it.

I thought PE was genetic. Please explain how your chest collapsed during an asthma attack. How did that episode change your bone structure?

Marfan is a genetic condition, that weakens the connective tissue. During an asthma episode, my chest collapsed from the pressure, which in turn also cause my lung to collapse.

Is it painful, at all?

It's only painful when I'm having an asthma attack.

How was your recovery from the nuss bar operation? I myself had pectus excavatum and about 3 years ago i had a bar placed. They told me that in about a month most people can lead their normal lives again, for me it took like half a year so i was wondering how it was for you.

My bar got removed a month ago, and the result is pretty nice.

When I had the bar put in the recovery went well. After removal I had an allergic reaction to the iodine cleanse and broke out in hives.

Do you have any difficulty breathing, or any issues with breathing?

Not OP but I got my bar taken out before my senior season of college athletics and I became twice the athlete I ever was, you feel like you can breath with a third lung

Also not OP. I had my bar out summer before high school. My athleticism and breathing did not see any benefits as a result of nuss.

Probably harder to notice at that age. I played 4 years of varsity high school, had the surgery, and didn't reap the benefits until my last year of college. 18-21 already carries a ton of added athleticism for boys so that might have contributed. I just didn't notice until the bar was out

Did/ do you have asthma?

At first my breathing did get better, but it's slowly reverting back.

May I ask how deep your pectus was?

At the deepest almost 6 inches

At first my breathing did get better, but it's slowly reverting back.

Yes, asthma, and when I have an attack, my chest will sink in even further. It's like a black hole and everything around it sinks in, which causes my collarbone to protrude.

Yes, asthma, and when I have an attack, my chest will sink in even further. It's like a black hole and everything around it sinks in, which causes my collarbone to protrude.

I had the same procedure when I was 18, bar got taken out after 3 years. Would've been in longer but the wires and screws began coming loose as I was playing a college sport with it in. Were you able to be active with the bar in?

For the first month, I could not lift anything heavier than a gallon of milk. After, I was able to resume normal activity.

How does your chest look? Did it work for you?

Asymmetrical more so than concave but not bad at all. My pectus was almost entirely on one side, overall totally pleased though. Took me much longer than a month to get back into things though

That's really great, that it worked for you :)

Maybe I'll be more successful with my 2nd surgery.

Hi! I had the nuss bar procedure when I was 10, two years after I had the bar taken out and two years on again my chest reverted back with the bonus of flared ribs.

Other than my parents none of my mates are aware of this. It does make me feel pretty self conscious and feel it will affect my ability to get a girlfreind. Guess I'm just looking for some advice?

Well, the only thing that will affect your ability to get a girlfriend is you. As long as you have self confidence in yourself that's all that matters. As far as myself, I just made outlandish stories to liven it up. For example I would say the hole in my chest was from one of my friends punching me or something along those lines. But as long as you find the confidence don't let anything get to down. Also, you don't have to talk about it. You can be vulnerable with someone that you like and tell them that it's a sore subject for you and use that as a way to bind with someone.

As far as mates go, either tell them or don't. That decision will be whether they're the king of friends that will always be around or people you're just acquainted with.

Damn op, I'm really sorry to hear that your surgery failed. I have pectus excavatum too, I'm 20, and had my bar removed last year. So far so good for me... When did you notice that the surgery had started to fail? Was it apparent right after removal?

It took about 2 years before the PE came back. So, it wasn't noticeable right away.

Hey OP, so sorry to hear this. I'm close to your age and had the surgery in January. Do you know what your haller index was before and after? Mine was 5.9 and seemingly had heart trouble from it, which will be confirmed or not soon :S

I honestly don't remember my haller index, but I'm getting my old files released to my current doctor. When I get them I'll post back the conclusion.

How do sexual partners react to seeing it for the first time?

Never bothered my wife.

My ex girlfriend had pectus. As a woman, obviously, it took a pretty weighty toll on her self-worship. We did our research on treatments, options (she did the majority of it), and decided not to go with the NUSS procedure. If I recall correctly, her pectus was too severe for it anyway. I can't remember what the procedure was called that they used, but it was intensive.

My questions to you: What would you do differently if you went back in time? If it weren't an immediate health issue, would you go still opt for the surgery?

Thanks!

If I went back in time I would let doctor's know what I have. If it wasn't a health issue, then I wouldn't have done the surgery.

How long did it take for it to revert? I just had my bar removed around 18 months ago and am worried about reversion (though my surgeon assured me it won't happen).

2 years after the bar was taken out. It's been slow reverting over the past 10 years.

Interesting, and not very comforting.

Thanks for the answer.

If it helps, mine is most likely linked to Marfan syndrome

Do you sit upright?

To the best of my ability.

I have pectus carinatum, though to a smaller degree. Did you have spinal problems like scoliosis as well? As did I.

My spine does curve, but I haven't been diagnosed with scoliosis as of yet.

I had a friend in high school who has the same condition. I always wondered, is it just a self confidence thing that led you to get surgery, or did it cause problems for you?

It started to crush my heart