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My Story
What is pectus excavatum (PE)?
Why I went for the surgery even though I reconsidered last minute
So after a year am I back in shape?
How do I feel about my chest now?
What's the deal with insurance?
Would I do it again with the knowledge I have now?
Emotional and spiritual digressions
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What is pectus excavatum (PE)?
Description from www.drkoop.com: Pectus excavatum is a congenital abnormality that can be mild or fairly marked. The child or adult typically has a hollow in the center of the chest over the sternum, and this may appear quite deep. It is caused by excessive growth of the costosternal cartilage (the connective tissue joining the ribs to the breastbone), with resulting inward deformity of the sternum. Because of its cosmetic appearance, a pectus excavatum may produce psychological problems in an individual. Pectus excavatum may occur as the only abnormality, or in association with other syndromes.
John Hopkins University (www.med.jhu.edu) describes PE in the following manner: Pectus Excavatum, translated literally as "sunken or funnel chest," is the most common chest wall deformity seen in children. An overgrowth of the rib cartilages before and after birth causes the characteristic depression of the sternum (breastbone). The cause of PE is not known, but often the tendency to develop PE will "run in the family." Depending on the seriousness of the defect, PE may cause poor posture with slumped shoulders and a protuberant or "pot belly" abdomen, as well as possible orthopedic or spinal problems later in adult life. In severe cases, PE shifts the heart to the left side of the chest and limits the ability to take deep breaths. Children with PE usually have no symptoms, but the defect becomes more pronounced with the growth of the chest during puberty. Some teenagers with PE complain of shortness of breath with exertion, anterior chest pains and easy fatiguability.
Hi! My name is Aaron Schneider and I currently live in Baltimore, MD. I always love to talk about PE so thanks for coming! Well the story goes like this...We (my family and I) were aware of my PE from an early age. I started really becoming self-conscious about it around 7th grade. As I grew into my teens I became more and more self-conscious; I mean super self conscious of my PE. I felt really unattractive. Until I was 16 I totally didn't even mention it to my parents. Then I finally had the courage to ask my dad, who's a podiatrist. We just talked about how it made me feel about myself and the way it affected my self-esteem (which I think it did). My father told me that when I was much younger, my pediatrician said that the PE was no big deal, simply a deformity that won't interfere with anything. Since it did bother me so much, we decided, encouraged by our new family doctor, to go to a cardiologist/thoracic surgeon.
Because my dad works in a hospital, he found "the best" cardiologist and we went, where we talked for half an hour. I told the doctor all the symptoms I had that I thought were a result of my PE:
About a year later, I went to a pulminologist who found that I had perfect lung capacity. Then I went for an EKG - also pretty normal. No proven problems so far. So finally when I was 19, we got smart and went to a new pulminologist who ordered "stress tests" which tested my lungs and heart after and during exercise to see if indeed my chest affected my capacity to breathe and "beat". And walla in fact, I had a significant lower capacity than an average guy my age and weight during exercise. I should add I couldn't swim more than a half lap for the same reason. The pulminologist wrote a letter to the insurance, but they simply denied me outright.
I found out that I needed a thoracic surgeon to say that the surgery would correct my medical condition - for insurance purposes. Problem: I already went to one who said it wouldn't. So we found this doctor in New Haven, CT who actually did PE surgeries on kids - and he wrote me a letter for the insurance saying that surgery was indeed a medical necessity. So why not the local surgeon? Because he did a PE surgery once a year tops. Also very few surgeons have done them in people my age group (~20 years old). It is from the bulletin board website that I found out about Dr Fonkulsrad. The second pulminologist "checked" him out for us. It was all good so far.
Yet, still another big hoop we had to jump: even if the surgery was approved, a doctor in the insurance network had to perform it. Thank God for my father, who was able to talk to the insurance directly and explain that we wanted a surgeon thoroughly experienced in this procedure and in my age group only. SO FINALLY I got approved!
Until a year ago, I had never told anybody about my PE. I was simply too embarrassed of my "deformity." But then I told some close friends about it and even showed them my chest. They said they wouldn't have noticed if I hadn't said anything! And as much as I tried to convince myself that "my chest isn't everything" it is hard to maneuver around something so largely tangible even with good intellectual self-argument.
The truth is though that I never felt better about my chest until...2 weeks BEFORE the surgery. Why? I think it's because, at that time, I started telling EVERYONE about my chest: friends, neighbors, fellow workers, I mean everyone - and every time I told someone, the less and less of an issue it became. It came to the point where I was wondering if I should do the surgery anymore!! (Due to the fact that internally my main motivation was cosmetic not medical). So my brand new world order theory: I was embarrassed...b/c I was embarrassed!! (Sounds very dumb, I know). I wouldn't say force yourself to go to the beach shirtless everyday (which I did once and boy did that not work) but somehow some way we PE people have to make PE a non issue, as in reality, it is. Unfortunately, the body is king, not reality, so it is so hard for "us" to feel part of the body-worshipping mainstream.
Why I went for the surgery even though I reconsidered last minute
In terms of why I decided to go for the surgery - 90% it was b/c of low self-esteem. I desperately wanted to look good. I felt ugly. 10% because it felt like the PE was the cause of my poor posture and the constant neck and shoulder pain I was experiencing.
The truth is that I did not research Nuss Vs modified ravitch the way I should have. I went with Dr Fonkulsrad (modified ravitch procedure) solely because I liked what I read and I liked what I heard. My father is a podiatrist and talked to Dr Fonkulsrad for a long time. My dad was satisfied - so I was too. The truth is I don't know much about the Nuss - I chose Dr Fonkulsrad because I read mostly about positive results from Dr Fonkulsrad's surgery for those who are older.
The surgery was PAINFUL. (afterwards, that is) The intense pain goes away after a week. My chest felt like moosh and was all swelled up. I had to sleep on my back for about 2-3 months. ooooh that was hard. And I couldn't cough, sneeze or laugh for about a month. If I did - it killed. But after about three months, I was pretty fine...I still didn't feel totally good until I had the bar removed. (The bar was painful sometimes.) Until the bar was removed, I couldn't do too much strenuous activity...it was hard...but I have a girlfriend who helped me out like crazy. Without her it would have been impossible.
Honestly, I thought the surgery would change my life. I thought I would now have this sexy chest and my self-esteem would skyrocket. The reality is that I felt no different psychologically, except for the fact that after the surgery I was open about my PE and freely discussed it with people. Being open - was what really made my PE less of a big deal.
So about a year later - how do I feel? Well, in terms of the self-esteem, deep down I knew that surgery wouldn't change it - superficially I hoped it would. I view my low self-esteem as a spiritual issue - and it needed and still needs spiritual answers - not surgery.
Honestly, I look pretty good now. But on one level, I am still unhappy with my physical looks. I want to be better looking. So what am I getting at? That if my goal is to be "good looking" (or any other physical attainment) - I will never be happy. After realizing that my self-esteem was just as low after the surgery - it hit me hard (perhaps not hard enough) that my perspective has got to change. I learned and am still learning that to be happy I can't focus on physical attainment - money, looks, etc. but rather the things that my spiritual gut tells me are important - family, religion, community, etc. Please forgive me if I sound like I'm preaching...I really believe the above though.
In terms of physical symptoms, Dr Fonkulsrad said that he didn't know if the surgery would help my posture and its associated pains. For me it did. Before the surgery, if I used to stand or walk for more than 10 minutes, my shoulders would kill. Now they hardly ever hurt! It's awesome.
So after a year am I back in shape?
I used to be really built - I haven't worked out/jogged consistently until now - I'm trying right now to get back into shape. It's hard when you don't use your muscles at all for 6 months. (6 months = time from surgery till bar removal.)
In my life "pre-surgery," working out did wonders for me. Working out doesn't correct the PE but it really: straightens posture, creates larger chest muscles which may shadow the "hole", build stomach muscles which pull your ribs in better and over all you feel healthier and stronger with greater self-esteem.
How do I feel about my chest now?
My chest looks good except for:
What's the deal with insurance?
Would I do it again with the knowledge I have now?
I'm not sure. First off, all my cosmetic results are pretty good. I can't say whether I have greater lung capacity because I haven't gotten into a regular exercise regimen yet. It seems though that now I can take deeper breaths as opposed to before the surgery when I could almost never do so.The first few days after surgery - it was quite painful to move, cough, everything. After about 4 days I did better...but for a good month my right shoulder KILLED. It was being pulled forward and my shoulder blade really hurt. After about a month the only thing that really hurt is a specific area on my right chest that was really tender all the time from the bar. It's also really difficult to not be able to carry anything for the first 3 months.
One of the biggest arguments I used on myself to go for the surgery was that if I didn’t do it now, I may regret it later and always wonder, what if I went for the surgery… what if my pains and posture got worse….what if my self-esteem remained artificially low because of my chest (even though my chest should not be a source of low self esteem)?
Emotional and spiritual digressions
As an adolescent, I had obsessive compulsive disorder (OCD) and low self-esteem. So you could imagine that when I started going through the teenage stage of wanting to look as good as possible, the PE really, really brought me down and just added to a vicious cycle of low self esteem and depression.
When I was 20, my PE still drove me nuts. I had all the typical reactions to my PE - what are girls going to think, pains in my chest, bad posture, lowered self esteem, social withdrawal, etc. However, I realized that the more you talk about it, the more you're open about it, the less your PE will be an issue. Personally, PE was just a superficial issue that reflected deeper and darker issues such as the fact that I wanted to establish my self esteem based on my looks and that I didn't value myself based on my personality...hence the depression and low self esteem.
I propose: That we admit to ourselves our deformity and that we genuinely adopt the mentality of self-acceptance. Striving/wishing to have someone else's body is ever unfulfilling and chronically depressing. We must recognize that true friends will be friends regardless of the PE. Moreover, these friends, which are probably the-not-so-superficial-type, would most likely be repelled by the level of pretending and fake confidence I had put on in the past to overcompensate for my PE!
In vein of my tendency to over-think things, the question of "would I do it again with the knowledge I have now?" is not a question of surgery or not; rather, for me, it’s more of an abstract-type dilemma:
I read this message from the from the bulletin board website and it hit home: if you were going out with a girl without a hand would you want her to be sulky about it or would you want her to just be totally normal and chilled about it? To say the obvious: the same applies to us!
Here's some updated (June 2004) food for thought on my changing outlook on the self esteem vis-a-vis PE: I am at a different stage of life now, vis a vis how I perceive my lowered self esteem that my PE "caused." Upon reflection, I realized that my issues were more global than simply feeling ugly. My whole outlook on life, like a typical teenager/college guy, was based on looks looks and looks. Deeper, the problem wasn't that I was shallow per se, rather, it was because I sought external validation, ie others' approval, in everything in life, from my looks, to my profession, to whom I dated. I used to curse this curse God/fate placed on my chest. I now see it as a painful lesson that I would probably have never learned if I did not go through the "PE experience" in the first place. I shouldn't say learned in the past tense. I am right now learning to look internally for feeling good, trying to create and utilize my own internal barometer. Given this perspective, I am not 100% I would have gone for the surgery - perhaps my PE was to have been the essential part of what makes me, me. To offset this philosophical hesitation, of course, are the medical considerations - e.g. pressure on heart which can lead to heart issues and lowered lung capacity.