if like to find out more about bracing for pectus carinatum

Posted , 3 users are following.

Hi, my son is 13 years old and is beginning to show a more pronounced chest protrusion. I don't like the sound of surgery, and would like to know more about bracing. Has anyone had it done? Where did you get it done? Was it costly/is it provided on the NHS? I would really appreciate any help with this. Many thanks

0 likes, 10 replies

Report / Delete

10 Replies

  • Posted

    Hi Alison

    I have just returned from 2 days in ingestion upon Thames with my son, Louis. He is 14 & a half & has Pectus carinatum. I went to my gp who referred us to a doctor for scans & an assessment, & they refused to treat him on the NHS as say it is cosmetic (I disagree & think it is psychological & could potential cause mental health issues as he gets older). I researched the condition extensively & Louis decided he would like a brace. We went to LOC in Kingston upon Thames who custom made 2 braces for Louis; one for the sternum & one for the ribs (this is quite usual for the condition). We were shocked at how overwhelming & emotional it was having the treatment. Louis became very upset when he saw him self in the braces & I was heartbroken for him. The braces are very tight on the sternum & ribs but not uncomfortable anywhere else as are well padded. The clinic (LOC) staff were lovely & I am confident it will work if Louis wears the braces & follows the exercises as shown by the team. My biggest worry at the moment is that he won't wear them. I think if he can get past the first week he will persevere, he is very headstrong though! I will do everything I can to make him see it through.

    Report / Delete Reply
    • Posted

      Hi there, thanks for your reply and I hope it works out for Louis. I've spoken to the clinic and we are debating the brace as a course of treatment. The problem is of course, the cost! It's outrageous that the NHS do not cover this... Isn't breast reduction also cosmetic?! I agree that it's more of a psychological Issue, especially going into young adulthood. If you're able, I'd be interested in Louis' progress, I'd love to hear how he gets on.??

      Report / Delete Reply
    • Posted

      For us it was something we were willing to spend the extortionate amount it cost us as I'd never forgive myself if Louis didn't live his life to the max & enjoy as many things as possible. We have not gone on holiday this year as a result of paying for the braces & also because Louis is self conscious about how his chest looks & would t feel confident taking his top off by the pool or at the beach. We've really tried to encourage him to get it fixed as believe it will be something he can I've come & will not be an issue for him going forward. Life is hard enough without a deformity to deal with. We have been told by the dr that by the end of the school holidays in 6 weeks, Louis will see results of the bracing. It will then be coming into the colder months where disguising it will be easier & then this time next year he will be rid of this cruel condition. We keep joking he will take the braces off & reveal a 6 pack & all the girls will go crazy! Haha. He liked that idea! Do you think you will go ahead with your son? Does he want the treatment? LOC offer a payment plan if that would help you? You pay half upfront & the rest in monthly instalments over 6 months.

      Siân

      Report / Delete Reply
    • Posted

      That's so helpful Sian thank you for your support, I think we will probably go ahead with that. I think they have a November clinic so will aim for that one. I'll let you know how it goes! And well done Louis and I hope you have a great summer next year!

      Alfie

      Report / Delete Reply
    • Posted

      Hi Sian,

      Me again! I was wondering how louis was getting along with his brace? My son, Rex has been accepted based on the photos I sent, and we are hoping for a November appointment.

      How's your experience so far?

      Alfie

      Report / Delete Reply
    • Posted

      Hi,

      Nice to hear from you. Louis is doing ok. He was a bit reluctant to wear it for the 23 hours a day as he's meant to, but we went for a review & adjustment last week & Sam (the dr we're seeing) said it was working. We had noticed an improvement (after just 6 weeks of wearing it an average of 16 hours a day), hence needing it adjusted. I think the noticeable difference it has made really encouraged Louis as he's wearing it far more now. Sleeping in it has never been a problem which surprised me. I'm pleased we decided to have the brace as would feel terrible if it became an issue for him as he got older.

      Is Rex excited/nervous etc about it? I'm sure Louis would be glad to speak to him if he would like to. He's on Facebook & snapchat etc if he would like to get in touch.

      Really nice to hear from you again

      sian

      Report / Delete Reply
    • Posted

      Hi Sian, thanks for your reply, sounds really positive for Louis smile Rex would really like to contact Louis if that would be ok, I think he would find it really helpful & thanks for suggesting it. Could you pass on his contact details if he's OK with that?

      I just also wanted to say that I'm so glad that I've been in touch with you, it's really nice to talk with someone who knows what I'm talking about & can share experiences. Thanks again for replying! smile

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up