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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:
alsonotmyname · 06/08/2021 11:05

My son has it, noticeable from birth and is getting worse as he grows, he gets a chest infection whenever he gets a cold and after really pushing last time he had one we finally have a paediatric appointment at the end of October. He's too young to be bothered by how it looks but I worry about sports when he starts school as he cannot run without coughing and having a racing heart - asthma inhalers don't make the cough better and send his heart rate dangerously high, hospital nebulisers have the same effect.

Original poster
bigyellowtractorface · 06/08/2021 17:44

My son's is fairly significant looking but as have said it doesn't effect his health or sporting wise. He is mega sporty with good stamina.

A suggestion on this thread was to join a few fb groups, so I have. Thanks for that idea. I have since read a few comments from people that say they previously had no health impacts but as they got older they have developed them, which js concerning. I was under the impression that for most it was a cosmetic issue but that seems not to be the case.

I have read a few posts from people who say the vacuum bell has made a really good impact. Even if the improvement was 20/30% I imagine that would make a real difference to the squashing of organs underneath.

Have also read more about specific stretches on a foam roller that can strengthen the back and push out the chest cavity. A brace may also be an option.

OP posts:
Original poster
bigyellowtractorface · 06/08/2021 17:45

That sounds worrying @alsonotmyname. I'm convinced some physio when they are young and bones soft could improve things.

OP posts:
Idontbelieveit14 · 06/08/2021 17:47

Both my son’s have it - age 4 and 13. It’s been apparent since they were babies. Mild/moderate. I have heard it worsens during puberty so that is a worry, my older son isn’t quite there yet.

Mycatispretty · 06/08/2021 17:50

I have it. I remember being teased in school about it. My family GP advised swimming and exercise to develop my chest muscles which I still do now. Other than uncomfortable bras I don’t think about it now

Usernamenotallowed · 06/08/2021 18:00

I've just been diagnosed with it after having chest pain daily for 18 months now. Finally found out that it's compressing the right side of my heart which is causing the pain. Waiting on further tests to see how it's affecting my heart etc... the operation sounds brutal so definitely worth considering the other options first if there's a chance they would work. There's a couple of Facebook groups worth joining.

123Mrscowel · 10/08/2021 17:56

I have this. I only found out a couple of weeks ago but always knew my chest had a "dint" but didn't know there was a medical term for it. I'm 37 year old female. It was picked up on a recent chest X-ray after going to gp with chest pains. I also had an abnormal ecg. GP said it wouldn't be related to my pectus but I am now going through tests with cardiologist to try find out what it is. He said pectus can cause an abnormal ecg and he said mine looked moderate. I think because I'm a woman and have breasts it does hide it very well. I'd be more conscious if I was a boy. I definitely do not want the surgery unless it is absolutely necessary.
I now have 2 young lads and I find myself constantly looking at their chest. It must be so hard for you as his mum, sending you best wishes.

123Mrscowel · 10/08/2021 17:58

Hi @Usernamenotallowed
How did you find out it was compressing on your heart? I'm undergoing tests with cardiologist to find out the same

Usernamenotallowed · 10/08/2021 18:07

@123Mrscowel

Hi *@Usernamenotallowed* How did you find out it was compressing on your heart? I'm undergoing tests with cardiologist to find out the same
They did a CT scan. I'd been having daily chest pain for over a year, doctor had no idea what was causing in after some other things ruled out so ordered one just to check that I didn't have a blood clot. Scan revealed severe pectus excavatum although I honestly can't tell by looking at my chest. My follow up tests are months away though so I've no idea what impact it's actually having but I'm still suffering with the chest pain daily.
RockaLock · 10/08/2021 18:10

This is a very timely thread for me, OP.

I'm sorry, I have no advice, but I am taking DS2 to the GP to get a referral about it next week, as he has always had a bit of a dip in his chest, but now it's really noticeable.

He has a rare genetic syndrome with lots of "little" things wrong with him, so this is another thing to add to the list, the poor boy.

It's really useful and interesting to hear everyone's experiences, so thank you all for posting.

Kiki275 · 10/08/2021 18:12

My 3yr old DS has this, which was noticeable at birth. Both his grandad and dad (to a lesser extent) have it and it's never really affected either of them health or fitness wise.x

123Mrscowel · 10/08/2021 18:12

@Usernamenotallowed sounds very similar to me, chest pain, breathlessness and also upper back pain, do you have any back ache? Have you had an ecg? I've recently had an mri scan and now waiting for results.
How old are you, if you don't mind me asking?
It's good to speak to someone else who has it, I'd never heard of it before.

Usernamenotallowed · 10/08/2021 18:17

[quote 123Mrscowel]@Usernamenotallowed sounds very similar to me, chest pain, breathlessness and also upper back pain, do you have any back ache? Have you had an ecg? I've recently had an mri scan and now waiting for results.
How old are you, if you don't mind me asking?
It's good to speak to someone else who has it, I'd never heard of it before. [/quote]
I'll PM you the thread doesn't become about me Smile

Floralnomad · 10/08/2021 18:21

I had mine diagnosed at 50 in a particularly bad year for me health wise , it’s not obviously noticeable but according to my respiratory consultant is the worse one he’s seen and is classed as severe , it was diagnosed after a couple of CT scans where I was also diagnosed with asthma and emphysema . My only obvious issue is that I can’t walk up steep hills and really can’t do any exercise that gets me short of breath , mainly because I’m unable to take very deep / large breaths and that’s always been the case since my late teens . It is easy enough to manage and doesn’t cause me any great problems ( at my age ) .

Original poster
bigyellowtractorface · 10/08/2021 20:32

It's so strange to read 2 posters say they were unaware of a chest dip but were then told via X-ray that their PE is severe and that the X-ray was only required due to symptoms. My son's looks severe and he has no symptoms. It's a hard one to get your head around any I feel a bit concerned about the future but there's no sense in worrying.

I noticed in the fb groups I joined that for some the nuss procedure failed after bar removal or 10 years later. It's a helluva op to have and then for it to fail.

OP posts:
Floralnomad · 10/08/2021 20:43

I think the issue is that with women once you get a bust it’s difficult to see PE regardless of how severe , I was in hospital with pneumonia as a baby and then my mother was taken very seriously ill so that’s how it may have been missed in my case .

AleynEivlys · 10/08/2021 21:07

Forgot to say also, I have a friend who does have Marfan syndrome and pectus excavatum (as a feature of his condition). I don't believe his changed at all once he stopped growing - I think once you are done developing then so is the pectus.

He is doing well - married with a baby etc. and though he looks a little different (mainly due to his colossal height!) he never had any particular problems finding girlfriends.

Original poster
bigyellowtractorface · 10/08/2021 22:07

Yes images I have seen of women with PE generally look much less noticeable than men, due to the bust. Tori spelling has it apparently. My son has rib flare with his too.

OP posts:
Pallisers · 10/08/2021 22:13

DH and his younger brother had it. DH did a huge amount of swim training as a boy/teen and it built his muscles up a lot - he thinks it made it less noticable. I agree. He also had asthma (grew out of it mostly - or rather it diminished once smokeless fuel came in) His younger brother was not physically active at that age and while his is more noticable, it really hasn't bothered him and he has no symptoms.

beggsie · 10/08/2021 22:23

My son has this. It wasn't noticeable until he was about 12 and then suddenly it was a cosmetic problem (no real physical effects). It upset him greatly for a while - so many tears. He is naturally built very skinny, wiry and strong. We decided to hook him up with someone on Instagram who offers a programme of exercises to address this issue- it has been absolutely life changing for him. He concentrates on building lean muscle and now goes to the gym most days. His physique has changed beyond recognition and he is no longer self conscious. It hasn't gone away but his confidence is so much better - it can be done! Surgery was never an option for him.

GiantCheeseMonster · 10/08/2021 22:35

I have it. It is genetic as my Dad has it and my brother too, although my brother has a more mild case than me. Unfortunately I have tiny breasts so mine is really noticeable. I don’t have physical symptoms, but as a teen I was really self conscious and I was bullied in PE so I feel for your son. Tbh the only thing that made me feel better was meeting men who found me attractive and helped me overcome my hang-ups about my shape. I have DCs now who I suspect will get it - hard to say for sure as they are young, but I think they have the rib flare which can be a precursor. Tbh nowadays the main thing which bothers me is the rounded back which tends to go with it and I’m having physio to try and help to straighten me up a bit.

99point9FahrenheitDegrees · 10/08/2021 23:15

My husband has a mild case, and his breathing used to get affected easily with colds etc. He got really into Pilates at one stage, proper Reformer exercises, not just mat classes, and that improved it hugely. He has since built muscle with martial arts, and you can hardly see it, unless he is stressed and letting his upper body 'collapse. Strong core muscles absolutely help too.

AntiSocialDistancer · 10/08/2021 23:15

@TartanBonnet

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

Absolutely brilliant article!

I've never noticed with a single person in that list.

soontomrs · 14/08/2021 15:17

@bigyellowtractorface
There is a group on Facebook with lots of members who have lots of advice. I've recently joined and find it really helpful

HavelockVetinari · 14/08/2021 15:53

If he's really bothered by it but it's asymptomatic he can get a silicon implant to even up the appearance of his chest if he doesn't want to go down the (painful) surgical correction route.