IAmA recovering patient that suffered from Pectus Excavatum. I just had the Nuss procedure completed after I found out about it on r/IAmA about 6 years ago and want to pay it forward! At 27 years old I am the oldest patient my surgeon ever operate...

Has it had a big impact on your social life or self image? I have a mild case that doctors have told me isn't of medical concern. It's definitely had an impact on my self esteem and made me a target for bullying, though.

I have always made light of it in my social circles. I use humor to cope. In reality I didn't feel comfortable in social settings, I went on a cruise in 2018 and didn't ever want to take my shirt off. When I get changed at work my shirt is always the first thing back on. I was never bullied coming up through school because I always made it a point to make a joke about it before anyone else could. I got really good at deflecting that confrontation.

I've had nicknames and my friends all have names they made for it. "The dip" they call it. Always a joke about putting salsa in there or using it for cereal. All in good fun.

I always had nothing but great support from girlfriends and my current girlfriend of 6 years has been nothing but supportive of this process.

Ive actually had a woman do body shots out of my crater. The thing holds doubles. Neat party trick imo

Same!!

Yessss - used to eat cereal out of my dent in high school.

Had it fixed when I was 19, recovery was slow and pretty painful, so make sure to get a good recliner you can chill in for a few months =). I remember my doctor saying, "very few people regret having this procedure, but nobody wants to do it a second time."

Best of luck (and when they take the bar out in a few years, ask your surgeon if they'll sneak it to you, I have mine in a box of keepsakes).

Edit: xray of the bar in my chest - and here's a photo of the bar itself

My girlfriend offered to get me a recliner to recover in her house. Might take her up on it. Sadly i can't help her with it

Thanks for the answer. I hope you heal quickly!

Thank you!

I have the reverse where my sternum pokes out. You just gotta own it. "hey wanna see my deformed chest" is a great party trick.

My brother has this. His still looks pretty normal head on. Mine is super u even which causes all sorts of weird problems (namely my nipples arent even close to pointing the right way.)

Wait so your sternum pokes in, and your brother’s pokes out.... What if you hug?

Every one comments that! I'm a good 4 inches taller than he is so they dont really line up🤷‍♂️

4 inches is 10.16 cm

Yeah I ment 4cm but murica got the best of me

Edit. Didnt see this in context and though I was being corrected on my incision size. I am in fact 4 inches taller than my brother

I have a mild case too. And I’m 34 now but when I was growing up my parents always treated it like it was an asset and not a defect. I would put candy in it while laying down watching tv and I really liked having it. So in school when a bulky tried to point it out I just replied “ya it’s awesome I put candy in it, it’s a built in bowl” and that was it. Don’t get me wrong I got bullied about other things but my “dip” never bothered me.

I will say that even though I’m told it’s too minor to effect me, I’ve always been prone to get short of breath quicker than others. Also, when I started to gain weight in my 20s it hurt my self image because the dip really makes the man boobs look a lot bigger.

I will say as a mechanic I'm going to miss my built in parts tray. Its great place for nuts an bolts

Ah yes the Nuss Bar. Never thought id see another person on Reddit whose had the procedure. I had mine done when I was 14. Pretty hardcore recovery. If you have a bracket(?) thing on your side you should mind twisting your torso. Sometimes the screw rub the ribs.

I had mine done at 16. Spent ten days recovering. I was on a morphine drip the entire time.

Be prepared to shit out a diamond at the end of recovery. The morphine will really dry you up haha.

Eleven years after the surgery now and I barely have any residual pain from the procedure.

Every now and then I'll move and the scar tissue will be a little tender but I dont regret getting the procedure done.

I already shit diamonds! About once every 3 days.

So I'll just have a gallon of coffee when I get home to help it along

I have 2 brackets on each side because of how old I am and how stiff my ribs are. He fought for 4 hours to get it all straight. He had a second bar on standby just in case but didnt need it

Having flashbacks to the bar tweaking slightly with funny movements - I don't remmeber it ever hurting but more like a SUPER strange sensation.

Also, I shocked myself while the bar was in there once and I felt it jolt through the metal. Kind of scary given how close it was to my heart.

Mine is anchored at both ends and has nylon wire holding it in place. So I'm so large there is a high chance of movement. The extra bracing is what is causing me the most pain

How does it feel now?

Even with a TON of morphine it hurts pretty bad.

Being his oldest patient ever it was expected. 15 year olds have much more flexible ribs. He had to fight mi e for several hours to get it "just so"

It was inserted on my right side so that arm is pretty useless

What is the prognosis and expected timeline for healing up?

I'm going to be in the ICU inder 24hour surveillance until tonight when Dr Stovroff checks in again. Then I will either be discharged or kept in recovery until tomorrow night.

10 days and I will be more or less indipendant but will not be able to lift anything for 4-6 weeks.

I am a diesel mechanic so I'll be doing paper work for a couple weeks

Take your time recovering, and make sure you have PT (Physical Therapy). Your muscles have been used to heavy wrenching, so after not being used for six weeks it is easy to do damage by "I can do this" and pulling too hard.

Since I was going to be down for three months post knee surgery, I opted to have both done at the same time. wtf was I thinking? The worst part was once I was ready to resume working out in the gym, gym has been closed due to COVID19.

Our gym JUST reopened so I'll get in there and run zero weight. Just use the machines for stretching through the range of motion.

Suggestion, wear a sling on your right arm. I only had a pacemaker installed, but I had the hardest time remembering not to lift my arm. You may not have the same issue because of pain initially, but when it eases, think about the sling as a reminder.

That's a great idea. I'm trying to stretch it out some especially no when I have the higher strength pain meds. When I go home I'll probably immobilize

At one point, someone threw me a bundle, it was going over my head, so I just threw my arms up to catch. It hurt at the time, and when it still hurt the following morning, I went back to the clinic. The tech checked everything out, and while he said it was OK, he gave me 7 shades of shit for forgetting. Told me fixing that after the fact was many times worse than the original operation. I still think the pacemaker moved enough that it is less comfortable than it should have been. I'm about due for replacement, hope I can get them to relocate a bit.

I will definitely be staying home as much as possible. Another user suggested an arm sling to remind me

Why didn’t you get a Ravitch?

The Ravitch procedure is far more invasive and can lead to major chronic problems down the road. The open the chest then actually cut and rearrange the cartridge to reshape the ribs.

The Nuss bar simply braces the ribs and allows the cartilage to stretch into place. In 3-5 years the bar is removed and the ribs stay in place

Little proof

https://imgur.com/a/KVHxhMx

You look good! (Probably better than you feel!) I had major surgery last year, so I empathize with you. Best of luck to you with your recovery: be patient with the present, stay upbeat with your eyes on the future, take it slow and easy, and do your physical therapy! I hope that next year at this time you're fully recovered and living life fully!

Thank you!

Congratulations, you look great. Enjoy your new nipple alignment!

It's the greatest!

I have pectus caronatum (?) so mine is convex instead of concave essentially. I don’t really have any reason to correct mine, but I’m sure I’ve gotten the same looks as you have

Mine is severely impacting my heart. I tried to go without in order to qualify for enlistment. Turned out I'm also legally blind so that was for nothing.

Excuse me, I am 18 years old and I think I may have this. My chest is pretty sunken in and when I was younger I experienced lots of chest pain attacks. Every doctor suggests I have no problem somehow but I could literally eat cereal from the bowl in my chest.. How can I truly get this off my mind or confirm if it’s true?

Go see a pectus specialist! I saw a cardiologist who insisted I was fine. I had an EKG monitor for 24 hours where they saw zero heart palpitations but guess what, I didnt have an episode during that time.

The cardiologist thought the only fix was the steel plate where they saw your ribs open so they never recomend it

I just got STUPID lucky and live a few miles from one of the best Nuss surgeons in the world. (North Atl)

I might see a specialist, and geez that saw sounds very scary. I wish you a speedy recovery!

No saw for the Nuss procedure! Small 4cm incision on each side of your chest. All done with a camera

You very likely do have it. It is not that uncommon. I was very fortunate to live by a specialist north of Atlanta. But even a general practice doctor or urgent care can diagnose you

Any other family members with the same condition?

Cheers to a full recovery and live life the fullest.

My brother has pectus carnatum (out not in)

By some myrical our younger sister did not get it.

No idea which side of the family had it

Is this due to Marfan Syndrome? I'm just wondering because I've researched that condition a bit.

I looked into it. I have 5 out of the 7 traits but do not officially have marfans. Thought I did for the longest time but my doctor has had several patients with it and they are much .ore pronounced in the hands and feet

I just saw the video on how's it done in yt. Good to see that your operation was successful! Does this procedure restrict you from lifting weights or running etc in the near or distant future? The titanium stays intact forever or it needs to be checked occasionally to make sure it stays in it's place.

The bar will come out in 3-5 years! I will be heavily restricted in mobility and functionality for the next 3 months.

I am a diesel mechanic so it will greatly effect my work. My boss and coworkers have been very supportive and will all pitch in to cover the heavier lifting and larger jobs while I do oil changes and paperwork

Less of a question and more of a comment - I went through this procedure when I was a child and had it taken out - at that point the hole sort of reverted but still better then before. Let me know if you have any Q?

Dr Stovroff usually waits until highschool for that reason. My hole was never very pronounced until my highschool growth spurt when it tripled in size. Being 27 I'm the size I'm going to be forever

My brother had this and the procedure at 15. He had the original procedure and it left a wicked scar. He tried to join the service but on examination the doctor was convinced the scar was proof of a heart problem. He had to sign papers promising never to try to enlist again.

Which is why instead I got a cardiologist to clear my heart despite the defect.

Got that cleared up but turns out even the army has minimal vision standards and legally blind isnt even good enough for a desk job

I had this procedure when I was 14, performed by Dr. Nuss! It was ‘03 in Norfolk, VA at the ‘Children’s Hospital of the King’s Daughter’, I think it was called. I stayed in a Ronald McDonald House with my folks.

Not to bite OP’s game, but I guess ask me anything as well?

Hey I need to split the labor on these posts. I'm pretty woosy and have a crack on my keyboard that makes typing fun

I hope your recovery goes smoothly and as painless as possible! My younger sister had the surgery at the beginning of the month at Mayo Clinic (unfortunately a plane ride away). Does your surgeon use cryoablation at the thoracic nerve roots for pain reduction, or taking a more typical approach? My sister had the ablation, but now is having worse pain as it wears off. Curious to hear what other surgeons are doing!

I was on a morphine drip last night and into this morning. Begged them to take me off of it because the constant bathroom breaks are just too painful (they have to run IV fluids in addition to the morphine) Plus the morphine was making me so disoriented that it took 3 hours to type the AMA!

Now I'm on oxycodone. Much more pain but I can think straight and I dont need to pee!

If you get a prescription for oxycodone; try to get a variant with naloxone. With that you won't be shitting the diamonds that were mentioned earlier.

Not a doctor. Just someone with chronic pain.

Dually noted

When I was growing up, there was a boy on my street that had this condition. He wasn't allowed to play contact sports with the rest of us, so the poor guy had to watch us play street hockey when we played... But he'd bike ride with us. He use to whip his shirt off and show off the crater in his chest. He used to put a golf ball in it. This was 30 odd years ago.

How long a recovery process is it? How did it affect your breathing? Are there activities you cannot do because of the bars?

I have always participated in contact sports bit it did cause severe chest pain any time my heartrate hit 100.

I got random shooting pains when laying down but otherwise just a marginally smaller lung capacity.

I am a diesel mechanic so I will be out of work for a significant amount of time. I'm not allowed to put my arms over my head which is 90% of my job. My boss and coworkers are being very supportive and will let me come back after 2 weeks do paperwork

Do you know what your Haller index was? Mine was just (as in .02) below the point health insurance will cover as medically necessary in the US.

I can fit a fist into my chest, but due to my overall large size the actual index is surprisingly low despite the large physical size of the deformity.

Mine was 3.75

Seeing your pictures i realized i have a pretty bad case of pectus excavatum, i should consult to a doctor.

What made you decide to fix it, aesthetics or medical reasons?

A little of both. With my defect being 3.75cm it is on the border of "severe"

My doctors words, "you could likely lead a perfectly healthy normal life without getting it fixed. You have a young powerful heart that can handle the extra preasure. But any problems you might have from it are going to be when you're older and the preasure is an issue but by that time you cant recover easily from corrective surgery

Might as well get it done as young as possible when recovery is easiest plus look the best I can in my late 20s while I'm still "young"

Mostly aesthetic with a medical justification. It could seriously cause problems as I age and I'll recover way easier now

I also saw an AMA on here ~9 years ago and had this surgery! I was a bit younger than OP is.

First thing I noticed (after the pain) was how much easier it was to breath. Did you have that experience as well?

I only had the surgery about 16 hours ago so it is still very painful to breathe. I'll need to do some follow ups in a week

How was it like? I did it littereally 3 months ago, the 2'nd of march and recovered extremely quickly, I went home after a week and could go back to school 2 weeks after that (with some limitations ofc) which surprised all of us, but just wondering how it felt as a older person with me being 15 I can't really know about that

Yeah I'm definitely in quite a good deal of pain. It feels like I was 15 just yesterday but let me tell you kid, if you pick a hard profession (I'm a diesel mechanic) be prepared to feel your bones rub together in 10 years

I cant imagine feeling able to do anything for at least month

God I love the nuss repair. I had the great fortune of observing a paediatric cardiothoracic surgeon do it several times a month when I was applying to med school. It looks rather brutal but its an interesting surgery.

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Good luck managing the pain, it's difficult for a few weeks but will get better. Don't jump or swim till it settles in!

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Wiill you be keeping the bar as a souvenir when they take it out?

Yup! I get the bar!

My son has a fairly minor case of this as does my younger brother. Was the condition painful before the surgery?

I had some chest pain especially during exercise. Sometimes sharp pain just sitting on the couch where I can t breathe in.

OP, had you considered treatment with a vacuum bell or was it ruled out because of your age?

My ribs are far too ridged and large for that to work

What’s your favorite dinosaur?

Finally a hard one. Always been find of the triceratops and the stegosaurus. Classic, keep to themselves, metal af with spikes and stuff.

My son who's 9 years old has PE, but I picked up on it when he was about 2.5-3 years old. I've also got a mild case, although mine is more under my left breast rather than the center of my chest on the sternum. I've seen indications suggesting it's hereditary, and my mom has a mild case of Pectus Carinatum -where the sternum bows out instead of caves in- and one of her brothers -who's since passed- had PE as well.

How old were you when your PE was noticed and diagnosed? Do you know if any of your relatives have/had PE or PC?

I know my brother has the opposite condition meaning someone else in my family must also have it but we arent sure who.

I started developing the hole in middle school and it became severe in highschool

I know that pectus excavatum has a hereditary component. My Dad, sister and me all have it. We are all minor cases but I do feel like I get short of breath easier than most and I attribute that to my dip.

Does anyone else on your family have it? Do you have children? My 2 daughters look like they MIGHT have a mild case but they are too young to be sure.

My brother also has it but his is the opposite. We dont know for sure which side we got it from.

And I do not have children

Have you noticed drastic changes in your ribs flaring out? I have a less severe case of pectus and flared ribs have been an issue with me my whole life

They were so flaired before! But the bus bar straightneed them up almost completely!

My chest looks almost like yours. Have you considered the vacuum bell or talked about it with your doctor?

I have not. I just had the Nuss procedure which almost completely repaired my defect with only 2 small incisions!

I’m 21 and have the same condition, for a while I’ve been able to be pretty active without incident so I’m assuming I have it pretty good as of severity. I’ve also heard of the Nuss procedure before but the idea of a pipe being surgically inserted is scary to me so I feel like it’s not essential for me. Plus with my less-than-optimal posture, it’d be a stark difference to get used to. Like I said, I’ve been able to regularly work out (lifting, calisthenics, cardio, stuff like that), would you still recommend it for someone who seems to have a less urgent need for it? If so, what should I know about the procedure and the logistics about it?

It could be very helpful for your posture. It brings your chest forward. That plus a little more confidence might be all you need for a great posture.

I also suffered from scoliosis, pigion toes and a herniated disc. Some good orthopedics and a chiropractor did wonders. I'm over an inch taller

I'm actually two years out from having this procedure done. I'm getting my nuss bar removed in 2 days!

My question: I was never told that this surgery would sever nerves and cause numbness in areas of the chest, so I was quite surprised to not be able to feel many areas under my nipples afterwards. Were you told about this? How do you feel about that sacrifice of feeling versus the improvement to your overall health?

Huh. I didnt. I just had a good feel around and from what I can reach (not much) I cant feel anything numb.

I think it would be worth it even if I found a numb spot

I am 26 years old (M) and I also have pectus. I have a pretty decent healthcare plan, was your operation covered? I have read that because it is considered “cosmetic” insurance providers will not cover it. Would love to get mine corrected.

Also, what will the total cost be after insurance if they are covering, and if they did not?

Dr Stovroff saw to that he highlighted the severity of the defect and the pressure on the heart so that insurance will cover it.

Hey, I nearly got that until I found out some people have to live forever in pain due to complications. Have you had any pain other than the obvious recovering?

I think that is the older procedure they are talking about (ravitch)

That is where they cut and rearrange the rib cartilage to straighten it.

The Nuss bar simply braces the ribs and let's the cartilage stretch to the right shape. After 3-5 years the bar comes out and the ribs stay put.

If there are complications the bar can come out early.

Obviously you still get the generic anesthesia complications that are possible

Kofi Kingston is that you?

Not I!

How much did it cost? And to what extent did your insurance cover it?

I have pectus excavatum as well and have considered trying to correct it, but as far as I can tell it would be a cosmetic procedure for me and my insurance wouldn’t help. I’ve been trying to address it (superficially at least) through muscle gain, which has helped to some degree.

Good luck in your recovery!

With everything, imaging, pre appointments, surgery, hospital stay. I'm out of pocket about 4grand.

My insurance pays 85% after a $2500 deductible but I already had some other stuff on the deductible

I elected to wait a year for surgery so that I could select a better health plan that would cover more.

I also have pectus excavatum! Not as severe as you though. Worth it? I’ve always thought about it.

As of now? I'd say yes. Great result and not the WORST pain. I'm definitely sore and will be tender for some time but I'd compare it to your calf muscles after shredding them on leg day, except on your whole chest.

WAIT A MINUTE... So that's the name of that? It needs to be solved with surgery? Fuck, I had to do some fisiotherapy a while ago and they said they could repair that, but I did not cooperate much.

Is fixing that too painful, or is there another way to fix that for a 16 year old like me?

It would be much less painful for a 16yo as your bones are still flexible. My surgeon has patients your age going back to class a week after surgery

I'm 32, any chance I'm eligible? I've been struggling with PE for years.

My surgeon has never operated on a 32YO but I've seen as old as 48!

So what about getting punched in the chest post surgery , or air bags seat belt in cars ? How does this change chest compressions for CPR? Do you need a tattoo on chest do not press ?

The structural integrity of my ribcage is completely in tact. It would hurt like hell but my internal organs are just as well protected today as they were yesterday.

A dear friend (30yr) has this and refuses to get the operation because he doesn’t want to deal with the recovery time. How bad is/was the recovery? We really want to convince him to get it since he’s got a fairly severe case and it limits his lung function.

I only just had the operation last night (woke up at 8pm)

I'm in a good bit of pain and that's with a morphine drip with oxycodone. I cant really use my arms for much more than typing on a phone. I'm supposed to be out of work 10-16 days before light duty for 2-4 weeks

Hey man, I'm 15 and had the same surgery this March. 3 days before optional surgeries were stopped. (because of the coronavirus) Do you find that this made you have a better self image? It definitely did for me. I haven't talked to anyone else who has had this. P.s apparently my original comment was removed because it "wasn't a question" so hopefully this works.

It really does. The worst thing about all of this is the judgment my girlfriend is getting. It is absolutely heartbreaking because several people have approached her saying she should feel awful for "talking me into it"

I've wanted to do this long before we even met and just because I'm at a point of my life financially she gets blamed!? Its sickening

I've always been uncomfortable in public settings without a shirt on even with close friends. I'm not chiseled by any means (you can see my perfect dad bod in the pics) but I always told myself "what's the point in working out? You will just look like shit anyway.

Hi, hope you're doing ok. I'm confused, when they put the bar in, did they 'just' push your sternum and ribs out ( holy crap!!) or is the bar going to gradually move them out kind of like braces?

Nope. Just all in one push. All at once. My ribs are perfectly straight and it feels just like you would expect

Did you ever eat cereal out of it? If so, what cereal and what kind of milk?

I have the same disorder and have used mine for cereal once and to hold bowls when I recline. It’s like a built in cup holder when you’re playing video games!

Hope you recover well friend!!

I could balance a large movie theater during in it. By flexing my abs, the cup would tilt and the straw sould guide into my mouth.

Definitely cocoa pebbles

Both my daughters have this (5 and 1 yr old). No one else in our family does and we had never heard of it until they showed it. My 5 year old has it really bad, like you can put your hand in it. Did you purely do the surgery for cosmetic reasons? Or were you experiencing any medical issues? We’ve read up on this and doctors have said it isn’t a big deal, but I noticed you mentioned issues with the heart in your post.

He mentioned elsewhere that he had it done partly so he could enlist, and partly because it was restricting lung function and causing chest pain during exercise.

I actually postponed the surgery so I could enlist. Getting the procedure would be the same as admitting you had a pre existing health condition and they wouldn't take me.

My eyesight is also so bad that that alone disqualifies me so I had no reason not to get the surgery done.

In hindsight I wish I had the operation when I was 15. The recovery would have been much faster

Mine was severe enough to cause chest pain and some shortness of breath. Definitely manageable and helped by regular exercise. I was on Varsity swim team in Highschool and did college ROTC for 2 years, stocked lumber at home depot and hiked the Grand Canyon and parts of the AT.

I wanted it done cosmetically knowing that it could cause issues breathing down the line when I can't get surgery.

My brother and I both have it (mine goes in his goes out) our sister had a 75% chance of developing it and thank goodness she didn't. I really had issues with it growing up that I masked with humor. But for me, I could easily hide it with a tshirt. My defect was severely off center which caused my nipples to point in completely different directions. My right "breast" was twice the size of the left. It's hard to hide somthing like that on a female

I know it's much easier to operate in the 13-15 year old range because their ribs are so much more malleable.

Is your prognosis that when you're all healed up you will be to the point of a 'normal' person as far as looks, physical abilities, etc? And once the healing is complete, would they remove the bar or does it stay with you forever?

I should be back to about 80% in 2 months and 100% in 3.

I was never physically handicapped with my condition and if everything goes right I will be right back to the same point physically by late summer.

I put up an after pic somewhere in here. That's essentially all that will cha.ge physically. When I'm home I'll have my girlfriend help take more pictures