My grandson has pectus carinatum and I have tried to find a group helpline of people who have the same problem as him. There is a patient chat line in America but it would be good if he could get feedback from someone in England. Most of their post is from sufferers with pe not pc as well. He will be having the operation this year. He's 18. There must be loads of you out there with no-one to talk to having the same problems.
Hi,
I just came across your post. Here is a post i have written about my experience with a PC.
Ok so here we go,
I'm now 23, but my story begins 10 years ago.... I must have been about 13 when i had started going through the painful, embarrassing stage that is puberty. At the time i was a top level swimmer for my age group (training 4 hours a day) winning competitions and being seen as a legend by my peers. However what no one knew was the pain i was going through inside.
A number of people had commented about my rather usual chest, but in the swimming world you see all shapes and sizes and people soon begin to get use to it. (plus there were two other guys with a similiar/milder condition). I must mention the swimming group i was in was very close net group of friends.
At the time i was also a keen rugby player and it was here that really affected me. I hated the changing room. People would stare, ask questions and even prodd my chest in discust. Obviously playing rugby meant i had people constantly smashing into me and feeling this deformity. After the session i would wait until the majority had left the changing room before exposing my chest and even then i hid it in as many ways as i could think off.
I can look back now and see how much it affected my social skills and my ability to get close to girls. I was forever trying to hide this obscure condition, wearing multiple layers and even at one point placing an item on the other side to even out my chest. I honestly tried everything, i had even developed a technique of tensing my stomach which reduced the size of the sternum, but as you can imagine this was exhausting and not very practical. As i've read in a couple of other posts, i'm no the only one to try and push and compress my chest back into shape.
The first time i looked into the condition i must have been 16. There was very little information available and what procedures were available were abroad, costly or not for someone in the middle of growth spurt.
So i pushed on, everyday worrying that someone would expose me and pull that face that still haunts me today. You know the face i mean, a mixture of confusion and discust ( even if by accident, it is an immediate response).
After years of staring i finally decided to quit swmming. I was tired of the questions and started to recluse and began using drugs to deal with the pain and embarassment. I could blame the drug use on my chest but in actual fact i think that would be incorrect. I started smoking weed to fit in with a particular crowd. It is also a lot easier to brush of the questions when everyone around you is stoned and only worried about what they can gorge on next.
Once again i decided to do some research, just to see if anything had changed. It hadn't but i came across an article written by someone in a similiar position who said by lifting weights it reduced the visibility of the deformity. So off i went, hitting the gym at every possible moment, using suppliments. Did i notice a difference? No, however it did give me that bit more confidence and self esteem, although it is not a solution. ( for me, i'm sure for people with milder conditions it can be of benefit).
So i left school, and decided to take a gap year teaching in Uganda. Obviously i was nervous meeting a group of new people and once again having to explain my condition. I was surprised to find that very few of my firends paid any attention to it whatso ever. There were questions ( which were asked in a subtle and sensitive manner) but for the first time in my life i felt comfortable with my shirt off.
It was in Uganda that i met my girlfriend (still my girlfriend after 4 years). We clicked and everything was great. She never once made a single comment about my chest as she knew how much pain it had caused me growing up. In some ways i wish she had just addressed it but i won't hold that against her.
A few
Hi
I am new to all this, my daughter is sixteen and has an appointment to see the surgeon for her operation for pectus carinatum. I am really struggling to find any one that is female that has gone through this, all the information relates to males. We are interested to know what to expect post op, how long recovery will be?
Thanks any info would be appreciated she should be having her op July/ August.
Hi this is a message for beaton21, i am an 18 year old male with pectus carinatum, i have an appointment at the royal brompton to see a consultant, could you let me know the name of your suegeon there please as there are a few and i would prefer a surgeon that has performed this many times. Thanks, your message has given me confidence to have it done hopefully. Cheers louisjc
No need for surgery. Bracing and exercise has largely replaced surgery. You can go to the Manor Hospital in Headington and get the T-Joe Pectus Brace along with exercise / physio.
Oh and both males and females are eligible for bracing.
Has anyone had experience of using braces? Where did they get them from and who did they see?
hi, i have had an operation in london at kings college hospital for pectus carinatum. this year it will be 4 years since i had it and i can say it has made a great change to my life for the better. i would recomend anyone with this condition to have it done if they can find a good and sympathatic surgeon like i did. i do have a scar but it is much easier to live with than the condition itself.
Just out of curiosity how much was the procedure?
Hi Sheila..ive just found your post from.a year ago and wondered how your grandson has got on....did his op go ahead....my son was first person in UK to have a new procedure done for pectus....the consultant is from Turkey and was invited by the cardiac team from the University Hospital Of Wales to come perform it....my son was 14 ..op was last july....hes just been back into hosp as wire and a screw came loose from the bar in his chest....we are 2 weeks post op and are going back into hosp as he has had continuous lower abdomen pain since....which procedure did they perform on your grandson i hope he is doing well x
Do you know the cost of this? Is it covered by the NHS? Many thanks
Hi louisjc, how old were you when you had the op? Was it done on the NHS?
Hi Alison
My almost 17yr old son is 3 weeks post op for PC ,done on nhs , amazing results , minimal scaring and doing very well !
Thanks Michelle, that's fantastic to hear!😊
Hi I'm currently talking to mr hunts office at the pectus clinic about bracing. 100% success rate, but expensive at approx 2k.
hi alison, i was 19 years old and yes i did have it done on the NHS at Kings College Hospital in London. Kind regards. Louis.
Hi,
im a girl who has the same thing. I really hate having everyone staring laugh and judging me for it. i cant talk to my pearnts about it as they dont understand what im going thorugh. i wanted to know if the surgery worked and if it hurt badly or left scars. Im conciderign having surgery but im not sure. Do you know any other ways to get rid of it with out surgry?
Have you looked into Bracing? After much research, we found a few specialist who could help my son's PC with a chest brace. He was 14 1/2 and was still eligible for the brace. It was intense for the first 4 months but we saw a huge improvement and he had to wear the brace less and less. I'm glad we took the time to look at all our options before deciding on the treatment. After 8 months his PC has been corrected and is not noticeable to the untrained eye. Treatment time is different for everyone. Our specialist is in the States Pectus Joe (Pectus Services). He travels to different states (East and West Coast) helping children with PC. He is a very kind soul who just wants to help kids get over their condition. He has helped our son so much with his self-esteem that I want to share this information with those afflicted and I hope it will help some of you. We wish your Grandson and everyone luck in finding the best treatment that is suitable for their condition.
Hello, my son has/had PC and he went through bracing in the US but you have the same in Manor Hospital in Headington as I read. We used the same brace and had fantastic results. My son was almost 15 when he actually got the brace and after 4 months it was almost normal. Look into that because it's less invasive, no pain of surgery and no scarring. Good luck with your treatment with whatever you decide.
Hi there, just come across your post, I hope your grandson had the operation successfully. My son has recently had the brace fitted. It's early days but showing real promise.