Living with Pectus Carinatum

I have been living with Pectus Carinatum for 36 years now. For those of you unfamiliar with the term, Pectus Carinatum is a rare condition that typically affects 1 person in every 1000. The condition can affect both males and females but tends to be more common in males. The condition causes the breastbone to protrude outwards due to an overgrowth of cartilage. It can be noticeable from birth but tends to become more noticeable in toddler years or as the person hits puberty and through their teenage years. It is offered referred to as ‘Pigeon Chest’.

How is Pectus Carinatum treated?

During my toddler years and into my teenage years I was taken to see my family GP. Both times, the same information was given. It is a cosmetic condition only and as such nothing can really be done about it. The only advice I was given was to try and build chest muscle to reduce it. It was only in later years I discovered there are things that can be done to resolve the issue.

The first is bracing. Wearing a bespoke chest brace in your teenage years, under the supervision of a specialist can resolve the condition permanently. This is because in your teenage years your chest hasn’t fully set, therefore by applying constant pressure in the right way, you can correct the chest shape. I don’t think bracing was an option in my teenage years. If it was, it certainly wasn’t mentioned to me. It is now available in the UK and other countries, however, at least in the UK it is still classed as a ‘cosmetic condition’ so the NHS will not fund it. This is available in the UK and US if you are able to fund it privately.

The second option is surgical intervention. There are two different surgical approaches to this but both are surgically invasive treatments that require extensive chest surgery and a significant recovery period. Due to my age, if I was to get this corrected, surgery would be the only option. Surprisingly a few NHS trusts will fund this but you have to be very lucky. This can be privately financed in the UK and US.

Does Pectus Carinatum stop you from doing things?

I would say on the whole it technically doesn’t stop you from doing things. However, what does stop you from doing things is how self-conscious you become about it. As an example, I used to love swimming and sport. At 11 years old I played football for the school and a local club, I was on the rugby team, athletics team, cricket team, and probably some others I have forgotten. By 15 I would no longer do any sport largely because I didn’t want to change in front of people. So I would say it’s more the psychological impact that it has on a person rather than physical symptoms.

In saying that I do remember some exercises, such as lying on your chest and stomach were uncomfortable to do, and had to cheat a little. (Using my arms to lift me slightly of the ground).

Does Pectus Carinatum affect your breathing?

This is where it gets a little confusing. I don’t specifically remember my breathing being affected by Pectus Carinatum. As a child and teenager I did not have asthma and used to do a lot of sport. As mentioned above though my participation went from very active to very minimal between the ages of 12 and 15.

At the age of 18, I started having chest pains and breathing problems. I was rushed into hospital after experiencing severe chest pain and trouble breathing. Following an x-ray, it turned out my left lung had collapsed, or tension pneumothorax to give it its technical name. This needed an immediate emergency procedure to put in a chest drain to reduce the pressure and resulted in months in and out of the hospital and multiple surgeries. Following a second major op to remove part of my left lung, this calmed down for a while. Then six years later I started getting the same pains and it turned out my right lung had followed the same path. Once again multiple hospital stays and another bout of chest surgery and the removal of the top 10% of my right lung.

Thankfully apart from the odd bout of chest drain, and excluding a couple of hospital stays, my lungs have been good since 2010. I have even managed a couple 10K charity runs and even a half marathon.

I must stress my cardiothoracic surgeon can not tie my lung issues with my pectus carinatum. But in the same breath he can’t rule it out, but does believe it to be unlikely related. As he is a Pectus Carinatum specialist, and as I have not come across anyone with Pectus Carinatum and the same lung issue, I would tend to agree.

Where am I now?

I am 36, married with a house, two dogs, a good job and still living with Pectus Carinatum as an adult. It has taken a psychological toll on me more than anything else. But it certainly hasn’t held me back or got in the way despite the additional lung issues. That being said, if I was a teenager again and knew a brace could resolve the issue relatively quickly and without surgery, I would certainly be shouting “sign me up”.

Living with Pectus Carinatum

Further information on Pectus Carinatum in the UK

Further information on Pectus Carinatum in USA

Further information on Pectus Carinatum in Australia

I hope you enjoyed reading ‘Living with Pectus Carinatum’ If you know of any other good resources from anywhere in the world, please comment below to help others.

Read more posts.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.