Pectus Carinatum - pigeon chest

[itbemay1]

Hi all

DC diagnosed with this 3 years ago and we are still on the NHS roundabout due to covid etc, thinking of going private and found Mr Hunt a cardio thoracic surgeon specialising in the bracing required for this condition, he works at St Georges and also from the Spire in Surrey,

Has anyone had experience of this condition or directly with Mr Hunt, according to his website he is the SE specialist.

Thanks in advance

We live in Dublin but travelled over to the London Orthotic Clinic in Kingston with our son when he was 13 . They made braces for him which he wore for about 9 months .
We still have follow up with them .
Highly recommend the clinic . I think it cost about 3000 pounds .

Thanks foodie really good to hear your experience. Hope your son is well.

Hi itbemay1. He is great and thrilled he had the treatment. In reality the chest flattened in about a month but he had to wear the braces for about 9 months. It's not easy but has completely changed his appearance and dramatically improved his confidence.
If you ever have any more questions feel free to DM me .

That's really good to hear, Thankyou for the support

@FoodieToo update - we had the brace fitted early Dec and I can already see a difference! He's taken to it so well, a few sore patches of skin and also a few stretch marks on his back where the brace sits but Dr has said normal? Fingers crossed we continue so well.

That's great news. Yes my son was sore so he wore a fitted vest from M and S between the brace and his skin for a while. It does work really quickly . Delighted it's going well .
Does your son have 1 or 2 braces ? Mine had 2 - one on the chest and then a lower one to negate rib flaring .

Vest is a great idea will look into that today. Just one brace on sternum. Thankyou

@itbemay1

I hope your son is doing well on the brace, how bad was his PC? And how is he doing now?

Thanks @RinkyD 12 weeks in he's doing great, his PC was on the high scale a ++deformity but luckily he is tall and stocky so hid it well, when he removes the brace for the 1 hour per day allowed his chest looks almost normal. He has adjusted so well. It's just the covers now, he has a spare but because I wash them at every shower so every other day he could do with a new set but they're £60! Could prob be made for less than £10....

Thank you, I am looking to take my 12 year old to the GP, another of my children has an asymmetric chest but this type of thing was not around when he was that age. My older child suffers from chest pain and back pain and i know the NHS leave it but I am not happy with that, my younger has other issues that make him stand out and I’m not having another burdened added. My sons chest looks symmetrical but pushed out. How old was your child when treatment began?

@RinkyD sounds like PC we noticed it around 3 years ago, GP did refer & DS had long waits, first for paediatrics then for a scan then onto ortho but orthopaedic said optimum time is before 16th birthday and my DS is 16 this year. NHS wait list to even make a decision was over a year and ortho advised that could be more delays so we decided to go private. Consultation was £250 and if went ahead that came off total. Where are you based and how is DC?

@RinkyD you've said 12, sorry. I would start ASAP incase waiting times are similar, we're in London if helps

@itbemay1 thank you for your updates. We will go private, interesting that i see they treat some kids earlier privately.

From my understanding the earlier the better. Hope you get sorted. Shout if I can help anymore, our Consultant is fab if you're in London. Mr Hunt at the pectus clinic.

Thanks

@itbemay1 - or any other mums, we are just about to start our son on a bracing program for asymmetrical PC with Mr Hunt. He will have both brace and rib flare band. He's 13yo and PC is relatively mild, so we may only need to wear 10-12hrs a day (nights) but for a longer period as he's only just started his growth journey....

Any advice on making this the most comfortable experience as poss or avoiding any pitfalls be gratefully appreciated.

Would welcome to hear how it's gone if you've finished treatment?

Thanks - #tryingnottoworrytomuchmum

Hi @chambo happy to answer any questions.
Mr Hunt is excellent, my DS had to wear his 23 hours a day initially, we bought a foam topper for his mattress which seemed to help with sleeping. Had to go up a size in TShirts as well.

We also got a spare set of brace covers, I can't recall if these were included or we purchased these but they were useful as it all gets a bit sweaty.

To be honest I was so worried and anxious about it but DS took it all in his stride. Treatment finished and his chest looks brilliant, he is really happy. Try not to worry they adapt really quickly.

@itbemay1 - Thanks so much for coming back so quickly! Your message is so reassuring and good tip on the foam topper and extra brace covers.

I'm hoping the same here, I think our son will take in his stride. I'll feel better once we're in the swing of things, I'm sure.

He only needs wear 10-12hrs but for a longer time 12months etc as although he's 13yo, he's pretty small and the PC relatively mild so being treated with the programme they normally offer to 8-11yo's bless him.

Thanks so much.

Hi Chambo. It's really quite daunting at first . Our son also had rib flare so he wore two braces I think almost 24/7. Was very hard.
I allowed him some Piriton to help him sleep the first while.
Was also generous with painkiller. Am mentioned above a tight fitting vest prevented chafing.
My son was discharged formally last month. He is nearly 18 now. Chest is perfect and it hasn't regressed at all.
It is SO worth it but it is difficult. My son had stomach issues while he was wearing it. He would feel sick after small amounts of food.
In some ways it was like a gastric band !!
No food issues at all since he stopped treatment and it really is very quick.
Best of luck with it .

@FoodieToo - Thanks so much. It's good to hear the goods and the bads. We just don't know how he's going to take to it and what we're in for tbh.

Thanks for tip on Piriton! Also, about the rib-flare band. I'm hoping that as he need only wear eve/nights he may get some respite if it is mega uncomfortable.

Watch this space... we begin in April..

All the best @chambo and do come back here if you think of anything that we might help with

Thanks for resurrecting this thread. Have been watching it for a while. Daughter has central precocious puberty and in the last year we have noticed pectus carinatum. She only 7 (8 in July) Her consultant has confirmed it and said watch and wait but now I see they treat it from 8 I think I'll skip the NHS and go straight to Mr Hunt. Would be good to get any bracing over with before high school and breast growth, plus shes technically already in puberty.

My poor girlie has been through a lot the last 2 years and her confidence is rock bottom anyhow. I havent even mentioned the lump on her chest yet

I see the London Orthotic Clinics costs are on the website but has anyone got any idea for the pectus clinic?

Hi @liquidrevolution from recollection the pectus clinic was £2800 all in. Excellent service, Mr Hunt was brilliant and all very easy I think you'll be doing the right thing getting your DD sorted early, sorry to hear she has been going through so much. Shout if you haven't any questions

@itbemay1 thanks so much for responding.