pectus excavatum info for parents
August 6, 2007 4:36 PM Subscribe
It looks like our one year old son has pectus excavatum, or a sunken chest. I've seen other guys with this but never really thought much of it. I understand that it's rarely a physical handicap, but that it can have some psycho/social reprecussions. Have any mefites dealt with p.e. growing up? Had surgeries? Wish you had/hadn't? How did your parents address it? How do you wish they had addressed it?
One of the pediatricians we saw scoffed at a nurse's suggestion that he might need surgery at some point (and was apparently clueless about the Nuss procedure). I know that's something to decide years down the line. I guess I'm just looking for some information about what to expect and what we should and shouldn't do. We mainly just want to be prepared. Neither of us have any relatives with p.e., at least not in our generation or our parents'.
One of the pediatricians we saw scoffed at a nurse's suggestion that he might need surgery at some point (and was apparently clueless about the Nuss procedure). I know that's something to decide years down the line. I guess I'm just looking for some information about what to expect and what we should and shouldn't do. We mainly just want to be prepared. Neither of us have any relatives with p.e., at least not in our generation or our parents'.
Has he been evaluated for Marfan syndrome (pectus excavatum can be one of the skeletal characteristics) or one of the related disorders? (I am suspected of having possibly mild Marfan's or more likely MASS phenotype -- the docs have never been quite sure, and my family history is ambiguous in some ways -- but sorry, no personal experience with pectus excavatum.)
posted by scody at 4:48 PM on August 6, 2007
posted by scody at 4:48 PM on August 6, 2007
I've dated 2 guys with this - one who had the surgery and one who didn't. Neither really cared either way. The one without the surgery joked that he could put salsa in it and eat off his body.
posted by k8t at 4:54 PM on August 6, 2007
posted by k8t at 4:54 PM on August 6, 2007
The one without the surgery joked that he could put salsa in it and eat off his body.
I had a friend who claimed to do the same with cereal.
My cousin, who has p.e., wore a chest protector when he played baseball and some other sports, but otherwise was perfectly normal.
posted by trim17 at 5:11 PM on August 6, 2007
I had a friend who claimed to do the same with cereal.
My cousin, who has p.e., wore a chest protector when he played baseball and some other sports, but otherwise was perfectly normal.
posted by trim17 at 5:11 PM on August 6, 2007
Best answer: I grew up with - and still have - it. It definitely had a huge effect on my social life growing up, and still continues to haunt me. Even though I'm now in my 30's, happily married with kids, I am so self conscious that I can't go to the beach or swim in a pool.
When I was a kid, I was ridiculed, and I was in constant fear that I would have to take my shirt off (for gym class, for example).
I know it will be a tough decision for you. I'm sure you'll figure it out. However, prior to both of my children being born, I was prepared to deal with the fact that I would be putting them through surgery. I really wish I had surgery so I could've been a "normal" kid. I'm lucky to have found a wonderful woman who can see past it, and I now have a wonderful family. But for many years, I felt like such a freak that I was sure nobody would be able to tolerate it. When I see men in public with no shirt on - even if they're fat - I feel amazing resentment. I just wish that I could be normal.
posted by tom_g at 5:25 PM on August 6, 2007 [1 favorite]
When I was a kid, I was ridiculed, and I was in constant fear that I would have to take my shirt off (for gym class, for example).
I know it will be a tough decision for you. I'm sure you'll figure it out. However, prior to both of my children being born, I was prepared to deal with the fact that I would be putting them through surgery. I really wish I had surgery so I could've been a "normal" kid. I'm lucky to have found a wonderful woman who can see past it, and I now have a wonderful family. But for many years, I felt like such a freak that I was sure nobody would be able to tolerate it. When I see men in public with no shirt on - even if they're fat - I feel amazing resentment. I just wish that I could be normal.
posted by tom_g at 5:25 PM on August 6, 2007 [1 favorite]
Best answer: A have a friend who had this, and he just went through surgery a couple months ago, when he turned 19.
I never knew he had it until he told me he had the surgery. This explained why he always turned down trips to the beach, water parks, and swimming pools. This explained why he always held the front of his shirt with one hand while he ran, because the wind would push the shirt close to his skin and reveal his sunken chest.
He wishes he had the surgery sooner, so he wouldn't have lived his earlier "fun" years in fear. Hope this helps!
posted by lain at 5:35 PM on August 6, 2007
I never knew he had it until he told me he had the surgery. This explained why he always turned down trips to the beach, water parks, and swimming pools. This explained why he always held the front of his shirt with one hand while he ran, because the wind would push the shirt close to his skin and reveal his sunken chest.
He wishes he had the surgery sooner, so he wouldn't have lived his earlier "fun" years in fear. Hope this helps!
posted by lain at 5:35 PM on August 6, 2007
Best answer: I have p.e. as well, and there can be some significant social/psychological issues- I know I had some growing up. Hell, I still have moments where I don't really want to take off my shirt at the pool or the beach or in front of a girl for the first time (although at this point it's more of a reflexive feeling of discomfort rather than any real fear of being ridiculed or something).
There were many uncomfortable moments in gym class or at the pool at summer camp where I was reluctant to go shirtless, and in hindsight I'm sure that it played a part in my social development, especially with girls and whatnot. No kid wants to be different and p.e. is always something different, it's a legit deformity that kids definitely notice.
If I had the money, I would look hard at getting the surgery, I've looked into it and my insurance basicly laughed in my face. The Nuss procedure is aroudn 30k and generally considered a 'cosmetic' procedure unless the depression is severe enough to seriously impact breathing. Oh- on that point I feel confident that mine does impact breathing to some extent, I played trumpet in highschool and could never quite hit the high note- although that is certainly anecdotal evidence. Anyway, money notwithstanding I would consider the surgery- at 23 I've learned to live with p.e. and I'm fairly comfortable explaining what it is to people if they ask, but it's obviously not something that I revel in.
I would shop around for a physician who is at least willing to discuss p.e. with you and your son- my family doctor always took the easy way out position of "Oh, that's interesting, don't worry, there's nothing abnormal about it". Consequently no one ever explained to me or my family that there were known social and developmental issues related to p.e. I feel like knowing more about it earlier in my life would have hleped me be more aware and comfortable with it. So talk to you kid when he's older and explain that it is an abnormality and let him know that there's nothing really wrong with it unless he chooses to make a bg deal about it in his own mind. I think the 13-14yr old me wouldve liked to hear that from someone.
posted by T.D. Strange at 6:36 PM on August 6, 2007
There were many uncomfortable moments in gym class or at the pool at summer camp where I was reluctant to go shirtless, and in hindsight I'm sure that it played a part in my social development, especially with girls and whatnot. No kid wants to be different and p.e. is always something different, it's a legit deformity that kids definitely notice.
If I had the money, I would look hard at getting the surgery, I've looked into it and my insurance basicly laughed in my face. The Nuss procedure is aroudn 30k and generally considered a 'cosmetic' procedure unless the depression is severe enough to seriously impact breathing. Oh- on that point I feel confident that mine does impact breathing to some extent, I played trumpet in highschool and could never quite hit the high note- although that is certainly anecdotal evidence. Anyway, money notwithstanding I would consider the surgery- at 23 I've learned to live with p.e. and I'm fairly comfortable explaining what it is to people if they ask, but it's obviously not something that I revel in.
I would shop around for a physician who is at least willing to discuss p.e. with you and your son- my family doctor always took the easy way out position of "Oh, that's interesting, don't worry, there's nothing abnormal about it". Consequently no one ever explained to me or my family that there were known social and developmental issues related to p.e. I feel like knowing more about it earlier in my life would have hleped me be more aware and comfortable with it. So talk to you kid when he's older and explain that it is an abnormality and let him know that there's nothing really wrong with it unless he chooses to make a bg deal about it in his own mind. I think the 13-14yr old me wouldve liked to hear that from someone.
posted by T.D. Strange at 6:36 PM on August 6, 2007
Best answer: My father, and all us kids, have this to varying degrees.
My brother has it the worst, and as a gag he used to eat his breakfast cereal or soup out of it. I've always been picked on more for my big nose than my chest deformity, so I never thought much of it. I didn't even know it had a name until now. YMMV of course - but even if your kid were perfect, kids would pick at that.
My brother once was involved in a snowmobile accident. When I arrived at the hospital with my mother, the doctor explained that they could identify and deal with all of his other injuries (shattered femur, and other bones) but were at a loss about the "damage" to his chest. We explained that he was always like that, and the doctor had never encountered it before - anyway they didn't bother with it.
If we had known that they could fix it, we woulda played dumb and let them. :-)
posted by Pogo_Fuzzybutt at 7:00 PM on August 6, 2007
My brother has it the worst, and as a gag he used to eat his breakfast cereal or soup out of it. I've always been picked on more for my big nose than my chest deformity, so I never thought much of it. I didn't even know it had a name until now. YMMV of course - but even if your kid were perfect, kids would pick at that.
My brother once was involved in a snowmobile accident. When I arrived at the hospital with my mother, the doctor explained that they could identify and deal with all of his other injuries (shattered femur, and other bones) but were at a loss about the "damage" to his chest. We explained that he was always like that, and the doctor had never encountered it before - anyway they didn't bother with it.
If we had known that they could fix it, we woulda played dumb and let them. :-)
posted by Pogo_Fuzzybutt at 7:00 PM on August 6, 2007
Best answer: My brother had a mild case growing up. He could in fact eat soup out of his sternum. As he grew, it lessened. He's always been skinny, 6'4' 140 at 16, but the chest dip in him made him look freaky "concentration camp skinny". He was always very aware of it, and hated gym and all sports because of it. He would never take off his shirt, ever.
If it's a reasonably severe case, as some photos have shown, I'd do the surgery if you have the means. Nothing like a high school locker room to scar kids, heh.
posted by sanka at 7:10 PM on August 6, 2007
If it's a reasonably severe case, as some photos have shown, I'd do the surgery if you have the means. Nothing like a high school locker room to scar kids, heh.
posted by sanka at 7:10 PM on August 6, 2007
Best answer: I have read that Sean Gunn, the actor who played Kurt on Gilmore Girls has PE (or pectus carinatum) and was even on screen shirtless once or twice. It would be great to be able to point to someone famous with a similar condition and tell your son that he has been successful (even sans shirt) with the syndrome.
posted by yellowcandy at 12:18 AM on August 7, 2007
posted by yellowcandy at 12:18 AM on August 7, 2007
Response by poster: Thank you all for your answers. We will ask about Marfan Syndrome at our next appointment.
posted by the christopher hundreds at 8:22 AM on August 7, 2007
posted by the christopher hundreds at 8:22 AM on August 7, 2007
This thread is closed to new comments.
posted by 4ster at 4:40 PM on August 6, 2007