THE DEMON IS BORN
I always knew that my chest was different from the other boys at school. This was independently confirmed on a beautiful summer’s day in 1979, when I was 12 years old. The class bully, a boy by the name of Benjamin Jordan, took it upon himself to make fun of my sunken chest during a school swimming carnival. Benjamin thought it would be amusing to point out my deformity to all of the students and teachers at the carnival by first chasing me and pulling off my t-shirt, and then standing above me shouting “crater chest” and “elephant man” – rather unimaginative insults, I remember thinking to myself at the time. Although, now looking back on it, the term “crater chest” was actually a highly imaginative insult for a 12-year-old boy. Needless to say, Benjamin Jordan and others called me crater chest for the next 5 years.
That summer’s day in 1979 changed my life forever. For it was on that day that The Demon was born. Life was bestowed upon my Pectus Excavatum by virtue of my hatred of it and of myself for having it. Why me? Why did I have to be different from everyone else? Why was I deformed? Why? As a 12-year-old boy, with no information or knowledge about such things, I was left alone in the prison of my thoughts. I stayed in that prison for 30 years. I remember that swimming carnival like it was yesterday, which is rather sad, because I am now 42 years old. Carrying around memories such as these for 30 years, irrespective of how deeply they may have been buried by your sub-conscious, has a profound effect on one’s self-esteem. More on that later.
It would take another 30 years after Benjamin Jordan outed my Pectus Excavatum before I finally found the courage to have corrective surgery in Berlin at the age of 42. And now, as I sit here almost six weeks post-surgery, the profound self-loathing that I have cultivated over the years remains difficult to revoke. Recovery has been, and continues to be, slow and very painful. I continue to struggle with issues of body image, despite the fact that The Demon has been slaughtered. This website is part of my recovery process – an avenue for me to express and share my feelings and to document my experiences and my progress out of the darkness of my Pectus Hell.
Although at times I express negative emotions about my experience with surgery and recovery, this website is ultimately intended as an expression of hope. I have finally defeated The Demon and am on the road to recovery. My hope is that the experiences I have had, and continue to have, will benefit other adults who may decide to pursue corrective surgery for their own Pectus Excavatum.
IT’S CALLED PECTUS EXCAVATUM
Despite knowing that my chest was abnormal from my early teenage years, it was only in my late 20’s that I discovered The Demon had a name, Pectus Excavatum. The term Pectus Excavatum is Latin. It sounds more like an evil spell from one of J.K. Rowling’s Harry Potter books than an anterior chest wall deformity. The word “pectus” means chest, and the word “excavatum” means hollow, so Pectus Excavatum is translated as “hollow chest”. The deformity is also referred to variously by non-medical professionals as funnel chest, sunken chest or, if one is to believe Benjamin Jordan, “crater chest”. One of my good friends, Randy, simply refers to it as “The Dent”. I usually refer to it as Pectus, or simply PE.
What you call it is irrelevant. It is a thief. It steals joy and confidence, self-worth, and spontaneity. Like one of Philip Burne-Jones’ beautiful vampires, Pectus Excavatum had such power over me that it was able to suck the joy out of many of my experiences, experiences that should have been fun. Going swimming, going on beach vacations, playing sports, making love, and many other experiences.
Despite its power over me for so many years, however, I finally managed to call upon reserves of inner-strength to take decisive action at the age of 42 and to drive a stake, or, more accurately, two 16 inch steel Nuss bars, into the heart of The Demon. Il est morte, but more on that later.
DON’T WORRY ABOUT IT. IT’S NOTHING
Pectus Excavatum is touted in the medical community as the most common congenital deformity of the anterior wall of the chest. In people with PE, the growth of bone and cartilage in the anterior chest wall is abnormal, typically affecting 4-5 ribs on each side of the sternum, creating a sunken or hollow appearance. The exact mechanism involved in this abnormal bone and cartilage overgrowth is not known, and, to date, no known genetic marker has been found responsible for the development of Pectus Excavatum – although I note that some newer studies seem to be leaning towards the conclusion that there may be a familial occurrence of Pectus. As with any congenital deformity, the appearance of the defect varies widely, from mild to very severe, and some patients present with significant asymmetry between the right and left sides. Mine was considered severe and slightly asymmetrical to the right.
Most cases of severe Pectus Excavatum are noticed at birth, with progressive worsening during the child’s growth and development. The condition typically becomes much more pronounced at puberty, during the time of rapid bone and cartilage growth. Most patients are brought to medical attention during their teenage years because of the significant change in the appearance of their chest. These significant changes can be terrifying for both children and their parents alike. Often the hole becomes much deeper during puberty. This is exactly what happened to me. Between the ages of 11 to 14 my PE went from mild, to moderate, then to severe. It was horrifying to watch it progress over this short period of time.
Many scales have been developed to determine the degree of deformity in the chest wall. Most of these are variants on the distance between the sternum and the spine. The most widely used determinant of severity today is known as the Haller Index, a measurement which based on CT scan measurements. The Haller Index is the ratio between the horizontal distance of the inside of the ribcage and the shortest distance between the vertebrae and sternum. An index over 3.25 is defined as severe and warranting surgical correction. My Haller Index was recorded as 5.0! Nice and severe.
When I was 14 years old, my family doctor told me that the hole in my chest was “nothing to worry about”, that it would never cause any physical problems, and that I would “grow out of it”. Needless to say, I didn’t grow out of it. On the contrary, it became worse over the years, both in terms of its physical appearance and its psychological impact. When I was in my early teens there was very little published information about the deformity and the Internet was not yet available as a resource to either patients or medical practitioners. So, to a certain extent, I can understand my doctor’s ignorance. Today, however, there is absolutely no excuse for medical practitioners to brush off patients who come to them with Pectus. No excuse whatsoever.
DON’T DISMISS ME
Numerous medical journals report that PE occurs in 1 in every 300 to 1000 births, which makes it rather common. According to Lorenz Surgical, the makers of the stainless steel bars implanted during the Nuss Procedure, approximately 349 people are born with Pectus Excavatum every day . That is an extraordinary number! Despite this, however, there is a shameful lack of awareness about PE among general medical community. Many medical practitioners continue to dismiss the concerns of patients seeking assistance in understanding and/or correction of their condition. These quacks should be sought out and exposed.
One of the reasons I have decided to create this website is to bring awareness to Pectus Excavatum and to create a central repository of information about the condition. I will post links to medical journals, research papers, online community support groups, video journals, newspaper articles, and anything else I can get my hands on which might help someone dealing with this condition. For it is only with knowledge can you hope to defeat The Demon.
If your concerns about PE are dismissed by your local doctor, my advice to you is simple – change doctors. Do not settle for incompetence. Find an experienced doctor who knows what he or she is talking about, or get a referral to someone who does. Talking about Pectus Excavatum is a frightening prospect for many people because it is not something you are accustomed to talking about or sharing with other people, even a medical practitioner. It can be very frustrating and disheartening when a medical practitioner brushes you off with rubbish about Pectus Excavatum not being serious, or that it is a purely cosmetic issue, or is something that either can’t be or doesn’t need to be fixed.
If you’ve got PE, you won’t grow out of it. Exercising won’t make it look better. Trust me, I tried everything apart from witch doctor remedies. Doctors who dismiss your concerns about your PE are doing so because they are ignorant about the condition. It’s that simple. This is unacceptable and you should push for a referral to a thoracic surgeon. Never give up.