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Original poster

Pectus Excavatum Help. Anyone have it or know anyone with it?

71 replies

bigyellowtractorface · 05/08/2021 20:47

I am looking for help and advice on the condition pectus excavatum and posting in AIBU for traffic.

My son has this condition. He is 14 and it only started to show up a couple of years ago. There were no signs before this and his chest had seemed completely normal.

He has already seen a consultant and been told that as he is otherwise fine and well he would not be eligible for an operation on nhs as it is purely cosmetic. He could have one privately but as the operations sound awful he and most definitely I would not want him to take the risk for something cosmetic.

It does get him down however. He has a suction vacuum, which was the only non surgical thing recommended by the consultant. Additionally he does a lot of weight training exercises which he has read might improve it. He hasn't persisted with the vacuum enough yet but says he is going to commit to using it consistently.

Has anyone got this condition, parented a child with it or know anyone with it? If so, have you ever found a solution to improving it that isn't an operation?

My son's condition is somewhere between moderate to severe but at the moderate end rather than severe.

Thanks in advance for reading this. Crossing my fingers for some guidance!

OP posts:
Crazycatlady202020 · 05/08/2021 21:14

Hello. I have pectus excavatum. Unfortunately I haven't found anything that improves it that isn't an operation. I am 32 year old female and decided I didn't want the operation, because as you say, the recovery doesn't sound that nice. I used to be very self conscious of it, but have found as I get older I care less. I am in a happy relationship with my boyfriend Smile and since I met him I am much happier in myself. I find things like walking up steep hills harder than the average person as obviously the rib cage presses more on the heart and lungs. I wish I could give you some guidance, as I am sad to hear that your son feels down because of it, but hopefully as he gets older he learns to accept it more, as I did. X

NeverDropYourMooncup · 05/08/2021 21:17

Youngest DD (and her paternal GM, we found out later).

It's a nuisance as it affects her ability to buy a bra that fits properly and comfortably. But that's significantly less likely to be an issue for your DS than it is for her.

endofthelinefinally · 05/08/2021 21:22

I know someone who has had surgery for this. It wasn't pleasant, but they are doing very well now and it was successful.

endofthelinefinally · 05/08/2021 21:23

Had the surgery at around 16/17.

hidethesquirrelsnuts · 05/08/2021 21:26

My son has this. It causes him chest pain approx 1-2 x a week. GP has said he may be eligible for NHS surgery as a teenager due to symptomology but I'm cautious unless it affects his quality of life or

hidethesquirrelsnuts · 05/08/2021 21:26

Limits his sporting capability

Tomnooktoldmeto · 05/08/2021 21:29

DS 17 has it moderately, he’s already a skinny beanpole and is really self conscious about it

He’s currently trying to build he’s chest muscles to try and disguise it not very successfully

As a retired theatre nurse having reviewed the procedure there’s no way I would want to put him through it unless it was causing actual problems and he’s covered by private health care

Original poster
bigyellowtractorface · 05/08/2021 21:37

Thanks for the replies. Crazycatlady it's great to know you are less self conscious now. I think he will be when he gets to a point later in life where he has a settled partner. He's at the age now where he is interested in girls, I suspect that is where the self consciousness is coming from. Can I ask at what age did your pectus stop developing? I don't quite know how to word what I mean. My son's has got slowly worse with puberty and I wondered how to tell if it has got as concave as it will get or if it could get worse. He started obvious puberty in year 9 and he has just finished year 10.

He is extremely sporty and the condition doesn't seem to affect his breathing at all thankfully. The operations aren't being considered just now with it being cosmetic and doesn't impact anything else. Glad to hear the young person you know is doing well. That said I have just googled and seen there is an implant operation which doesn't as drastic but would still prefer to avoid unless he became so low the benefit outweighs the risk.

OP posts:
Bean92 · 05/08/2021 21:37

My DH has this. He said it bothered him a bit when he was a kid as people would tease him about it. He read up about the op but decided against it as it is just cosmetic for him too.

It doesn’t bother him in the slightest now. He’s fit, plays rugby etc. He says it won’t do any harm to build up the chest muscles which improves it slightly but there isn’t a miracle solution.

glitterelf · 05/08/2021 21:42

My DD was diagnosed at 3 months old after having a cold which exasperated her dip. The consultant was pretty awful and signed her off saying don't worry mum she'll qualify for a free boob job on the NHS Hmm and to get the GP to re refer her if any issues. DD is 7 now and as she's growing it's becoming more noticeable but otherwise not causing any issues but I am concerned that it may worsen as she grows further.

Original poster
bigyellowtractorface · 05/08/2021 21:45

I agree Tomnook. The ops make me feel scared rigid and thankfully my son feels the same. It's great to read the comments about outgrowing self consciousness.

He follows pectus pt on youtube and does weights to build his chest, core and back. He is extremely skinny which probably accentuates it. Perhaps if he fills out weight wise it will improve. He eats an incredible an amount compared to my other son and is soooo thin. I have wondered if pectus is related to low weight but rationally I can't see why it would!

OP posts:
bobbycock79 · 05/08/2021 21:46

DH has it . When I first met him (age 20) he was very self conscious about it and hated taking his shirt off. He used to suffer with quite sudden , stabbing chest pains which were a bit frightening but docs weren’t interested in investigating further. I assume now it was related. He doesn’t seem to get them anymore. It hasn’t massively affected his life but we met quite young and before all the body image pressure young men are now facing. The op does sound gruesome and I don’t know what I’d think if our son inherits the condition.

QueenoftheFarts · 05/08/2021 21:46

My son has Pectus Rolling Excavatum. We spotted it when he was about 11. He was offered surgery for it. This was UK and we were told the mental health implications mean they will operate.

He does a contact sport though, and when he went for the consultation they told him he would probably have to quit for at least five years.

He decided to think about it for longer and I am so glad he did. He is 20 now and has musculature developed which makes it much less noticeable.

I think one thing that was important was that he had a good support network. He already had some impressive scars from surgeries but he whipped his shirt off in front of his mates and they all declared that he looked great as he was. I will love them forever for that, they made sure he knew he was OK as he was.

Crazycatlady202020 · 05/08/2021 21:48

I was born with it and I feel like it stopped developing around early teens, but it is hard to remember sorry

Badgerstmary · 05/08/2021 21:51

My son had P.E. & was moderate to severe at 15. As he continued to grow, it deepened a lot during puberty. It affected his breathing whilst playing football & his self-confidence & he chose to have a nuss bar fitted after his GCSE’s. Yes, it was painful for a couple of weeks but he has the rest of his life to enjoy the benefits. Whilst the bar was in he was able to play spot, go to the gym & do white water kayaking.
When he had the bar removed, he walked out of hospital the same day & was partying 2 days later!
Your son does not need to make any decision yet, maybe give it another year & see how his breathing & confidence are. Surprisingly I know of 2 other boys at my son’s school who had the operation when they were about 16.
Good luck to your son.

Original poster
bigyellowtractorface · 05/08/2021 21:54

Glitterelf I'm sorry to read about that experience. My son had no signs of it whatsoever until he was 11 and has slowly got worse since then. I took him to the gp who eliminated marfan's syndrome and diagnosed PE.

I don't know what you can expect. It's a condition that effects one in a thousand but I haven't personally found that much in the way of decent information on it.

Over lockdown i pushed for a consultant appointment which he had over zoom and has been checked in real life since.

My son is always reading Reddit or watching YouTube looking for a magic bullet solution. He's mentioned things he has read about like certain shoes or a back brace but I don't know if there's any basis to any of this stuff.

From what I gather, there's more chance of a non surgical improvement whilst they are younger and the bones are softer, meaning the vacuum bell has more of a chance of improving it.

OP posts:
HappyMeal564 · 05/08/2021 22:14

My 3 year old has a mild case of it. DH had it too, he has grown out of it or at least built up muscle and you really can't tell

AleynEivlys · 05/08/2021 22:14

My little girl has it. She's 7. It doesn't seem to be too bad/noticeable at the moment but like a PP I too worry it will worsen as she gets older. I wonder if I have it myself sometimes - I do have the flared ribs that tend to go with it, but no hugely obvious dip that I can see. 'Pectus posture' can make it look even worse than it actually is I believe so it might be worth looking at some physio to properly support his back and chest?

Or you could look into a custom-fitted implant to fill out the space once he has stopped growing and his pectus will no longer change? It's £££ but much less than the Nuss or Ravitch surgery. I am counting on that still being an available option for my daughter if she ever decides she wants it.

Bunnycat101 · 05/08/2021 22:18

Look at the Facebook groups online. You’ll find some really knowledgeable and supportive people on there.

MythicalBiologicalFennel · 05/08/2021 22:21

My sister has a mild case. She only got diagnosed when she got pneumonia in her late thirties - as in "oh and BTW you do know you have PT, don't you?" Hmm. It is not very noticeable and she is not really affected so doesn't qualify for surgery.

Ruple · 05/08/2021 22:29

I could have written your op, my 14 year old DS is exactly the same as yours. We have the vacuum bell too but it doesn’t seem to have made any improvement (and to be honest he isn’t great at wearing it consistently). I look back at photos of him a few years ago and it wasn’t even there. Like your DS mine is very thin so I don’t know if this makes a difference in how deep it looks.

Luckily he isn’t feeling self conscious about it at all and consultant has said although he is a moderate case it is purely cosmetic. We may look at the implant in future if he does want to go down that road but I wouldn’t want him to have surgery unless his health is affected and even then, it does sound like a risky procedure.

TartanBonnet · 05/08/2021 22:39

I had never heard of this OP so decided to google!

My word look at all the famous people who have it including Sly Stallone, Tori Spelling and Captain America.

Maybe show your son this link of 20 famous celebrities that have it.

https://pectusexcavatumfix.com/20-celebrities-with-pectus-excavatum/

Hope all is well with his health though. Thanks

savagebaggagemaster · 05/08/2021 23:59

I took my now 12 yr old ds to the gp when he was 9 as we noticed he had this. I was told it was nothing to worry about. It's very pronounced and other children have asked him if he was hit by a cannonball in the chest! Ds doesn't seem too bothered about it, but I had no idea there were treatments for it. He's never been checked by anyone other than a gp - does he need to be?

Immaback · 06/08/2021 00:04

My son was born with this. I think it has gotten a bit better as the years go by but he is only 5. I did some research into the surgery when he was first born (it was so strange compared to the other babies) but it’s quite high risk.
There was a boy in school that had it and we all still fancied the pants off him!

CounsellorTroi · 06/08/2021 00:18

No advice but I believe Josh Widdecombe has it. He has a partner and a baby!