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

[bigyellowtractorface]

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!

@soontomrs I have recently joined a few. Which one are you thinking of?

He's driving me mad with not wearing the vacuum bell enough. He forgets and yet he works out for an hour a day and drinks loads of high protein drinks. He is mega skinny and is hoping the drinks and weights will bulk him out. It isn't happening yet. He's been committed since Christmas and benches quite heavy weights. I think he would have more success with the vacuum.

I have seen the implant op and mentioned it to him. It looks much less scary than the nuss ops, so could be an option. He says he wants to try and sort it with him exercise first which is definitely preferable.

Me and DH have it. It’s not an issue to either of us, didn’t even know you could have surgery for it.

However, I do have a different abnormality that used to affect my confidence a great deal as a child. But I grew out of caring about it. Hope the same happens for your DS!

Hi my daughter has it, she is 8 and I only noticed it a few weeks ago. At the moment it looks mild and doesn’t seem to have any affect on her health she never stops running and dancing around. I’ve had a few weeks from hell with worry but feeling a bit calmer now and able to look for posts on here without going into melt down and not eating or sleeping for days 😩. I am concerned for her future but can’t spend everyday while she is so fit and healthy worrying about it. The thought of the surgery terrifies me so really hoping it’s something she won’t need or want xx

If it is mild maybe she could start with the vacuum bell now. I have no idea but it might help prevent it getting worse in puberty

DH has it, fairly mildly I think. I didn’t know him as a teenager but he was tall and skinny and ate like a horse, so sounds like your DS. Very sporty, the PE caused no breathing issues.
He filled out muscle wise during university (rowing especially helped) and I guess that probably helped minimise it. It’s never caused him to be self conscious in fact he wasn’t really aware of it. I’m the one who looked up what it is. I call it his soap dish or that it looks like a cricket ball caught him there one day…

Coincidentally my mum also has it (hers looks a bit like Paula Abdul’s) also not caused her any problems, she reckons it just increased her cleavage…

TBH it sounds like you are more bothered by it than he is?

My son has this, and are are currently trying out the vacuum bell after reading about it's success - www.lifewithpectus.com/resources/does-the-vacuum-bell-fix-pectus-excavatum

It seems to be working great so far, we're curious about the long term results.

My son's actually looks a lot like the first picture and his measurements are similar. The vacuum bell doesn't seem to be doing anything but he's still quite hit and miss with wearing it. He very committed to working out tho. Good luck to your son. In some of the groups I have joined since posting here I have seen loads of people say their children have had great success with it.

I know this thread is quite old but I am posting because I suspect my DD has PE.

My brothers, uncle & grandfather also had it & my youngest brother's was very severe (cardio thoracic & hepatic involvement). He had the Nuss procedure under Naidu at B'ham many yrs ago & it was life changing for him. We saw children in his waiting room that were literally crippled by it - unable to stand even. My brother was one of the last children operated on under the NHS. It is absolutely baffling how this is considered cosmetic when it has such far reaching implications for some children (& adults).

The vacuum bell was never an option for my brother. The operation was wonderful for him. I am in the process of getting DD assessed - has anyone been down to the private clinic at St George's?

One of my friends has this OP, one side is more affected than the other. She was a bit self-conscious while growing up but she's fine with it now.

The fact that your son is very skinny doesn't help. It will probably be less noticeable as he grows older and most likely puts on a bit of weight

My husband has it and it began being noticeable around his early teens. He didn't have the surgery and although he is very muscular he doesn't do any particular workout for his chest. He breathes more often than most and can't hold his breath for long. Hills and running are difficult but not impossible.

Would be interested to hear how you get on. We noticed our 13 year old had a severe dip and flared ribs just over a year ago. It was really alarming to see and a shock that we hadn't noticed before (I understand that it does tend to develop around puberty). He also has scoliosis and is unusually tall and thin.

It took 5 months for a consultant appointment (paediatrician). They heard a heart murmur so referred him to a cardiologist for an echocardiogram, but that referral never came about. They then referred him to a Marfan clinic (he has multiple indicators for this as far as I can see), the consultant said they didn't think he has Marfans but it might be a quicker away to get his heart assessed- the appointment isn't until the end of 2022!!

Early on we tried to get a private referral but health insurance wouldn't cover it, insisting that he doesn't 'have any symptoms' as in it's not affecting him. As the heart murmur was found by 'screening' rather than causing him problems that wasn't considered something that needed investigation either. Health insurance advisor claimed that the NHS was the best place to help with such conditions anyway.

interesting. Our DC appt came in the middle of the summer hols so we have rescheduled for September. We do have private healthcare - I am relying on it to fund this op if/when she needs it.

DS14 has developed quite severe PE over the last 18 months or so.

The GO said "oh, it's just cosmetic - but as DS has a rare genetic condition, let's refer him to a paediatrician just in case".

Paediatrician saw him, said "oh, it's just cosmetic, I've seen worse, off you go". Then decided they'd refer DS to respiratory just in case.

Respiratory consultant said "I can see why you're worried, but don't be, I've seen much worse. But let's do a complete set of tests and check everything out just in case, seeing he has this weird genetic thing going on".

Well.

Lung function test showed DS's to be only c65% of that expected. MRI showed the degree of PE, especially combined with the lung function, was enough to warrant surgery.

We have a repeat lung function test in the autumn and a surgical appointment in the spring.

So if it is severe enough, the NHS will operate. If you can get them to fully investigate first, of course... (We are helped here by the rareness of DS's syndrome: doctors often play it very safe with him because they know so little about it).

I will try to remember to come back to the thread to let you know what happens. I am also going to ask about non-surgical interventions, although I am heartened to read that a PP's relative had good results from the Nuss procedure. DS has a slightly odd-shaped rib cage anyway, due to his syndrome, so hopefully the normal methods will still be available to him.

I have just found this thread. I strongly think my DS has it - GP appointment next week. He perhaps had a slightly concave chest before but suddenly seems to have worsened dramatically. He is 12 and just had growth spurt so maybe why. He has always had a real problem with stamina and aerobic exercise, despite doing a lot of exercise. I wonder if that is why. He is also highly hyper mobile so also wondering if that is affected. I’m really worried it will affect his self esteem growing up, but that weblink of Celebs with the condition is fantastic! I’m currently doing my usual thing of catastrophising and trying not to.

How ironic that this thread has been re-instated. My son's friend has it. It is affecting his heart and lungs but despite scans showing this he has been refused the surgery he needs. It will cost £18k. I'm gutted for him. He is currently investigated the bell vacuum option but it's WRONG that this fairly simple procedure (Nuss) is being denied to so many.

I tried to persuade him to start fundraising but he is a very private, proud young man who hates asking for anything and doesn't want the publicity.

I’m following this. My DS now 14 has this. He’s intensely private in dressing and undressing and I got a shock when I saw him swimming this summer. I realised I might last have seen his naked chest three years ago- we haven’t been swimming on our short trips in 2020 and 2021. GP confirmed he has it but said if it isn’t causing pain then leave it alone, DS is not bothered about the appearance. He is also very skinny.

My son's friend went to his GP because he was experiencing pain and breathlessness. The appearance doesn't bother him at all but the physical symptoms do.

Can anyone tell or link me to where to get a vacuum bell, please? DS3 has this - the Dr described it as mild but we would like to explore this if possible.

I found this place. The cost is approx £2k

www.londonorthotics.co.uk/pectus/pectus-excavatum/

it’s not suitable for everyone.

Hi - what is the £2000 cost for? Is that treatment with the vacuum bell?

Yes, Verite