Pectus Excavatum - anyone have experience

[Miss Marple]

My son may be facing surgery for this and we are wondering if anyone out there in WTM world had any experience with the same surgery. Lots of questions here :D

 

Would appreciate any information. You can PM or e-mail me, too. Thanks

[RJH]

Me me me! Raising my hand! DS has it, but we are not at the surgery stage yet. If/when we do get there, I am fortunate to live near the hospital of the Dr who perfected that surgery. Our ped told us he would not recommend surgery until age 12. His PE is benign mostly. It doesn't cause any major problems for him. He has been to a ped cardiologist twice(age 2 and 4), and they gave him the all clear. He does have chest pains sometimes, though. Usually related to physical activity. The sad thing for me is that his friends are starting to ask what's wrong with his chest. I have been explaining that we are all different, and he's just made that way. And he seems fine with that at this point. I would hate to see it affect his self esteem.

[Miss Marple]

My son's PE was very small when young, but over the last 2 months has enlarged significantly (he's 15 and growing like a weed). As a child, the PE was not large enough to warrant any special attention, but now we a set to see a pediatric surgeon in a couple of weeks.

 

He is getting selfconscious about it and seems to want to get it fixed. We haven't had any cardiac or pulmonary tests yet but he does complain about back pain located just opposite the indention.

 

Would you mind sharing the name of the physician you mentioned who perfected the surgery?

[Happy]

Our son had this surgery. (To correct the pushing in of the sternum by the ribs) He was....eight years old when we did the surgery. (Sixteen years ago.) It did help. His was a deep dip right over his heart. While his heart was fine, he didn't have a lot of room for breathing.

 

His health improved over all after the surgery.

 

It is a major surgery. I suggest you go to a surgeon and a hospital where many of these have been done. (I wish I had researched it more.) Our son had a couple of rough days in the hospital, then a couple at home. Other than that, his recovery was quite smooth. A follow up surgery to remove the brace was quite anti-climatic six months later.

 

Our follow up care wasn't what I've heard others do. I strongly suggest lots of upper body workouts. Swimming specifically, to build the muscle necessary to hold the chest up right better.

 

My greatest disappointment was that because we didn't do all that follow up, his chest still 'sank' after a time. It is better than it was, but I believe it could have been better, had we had better advice.

 

As it was, his chest kept him out of the Marines.

 

Yell, if you have specific questions. In short, yes, I'd do it again. I think it helped both the look of his chest and his health, but I do lots more research on the doctor and follow up therapy.

[Miss Marple]

Thank you! I'm sure I'll have a lot more questions after our appointment on the 25th.

[RJH]

Here is a link for you. http://www.chkd.org/Services/NussProcedure/ And I also read recently that PE can get worse during puberty. I forgot the reason why. I would definitely google, and get all the info you can. Make sure your son weighs the risks and benefits of having an elective surgery (meaning his PE isn't causing any medical problems). I'm sure I will be in your shoes in a few years, and I'm not sure how I will feel if DS wants the surgery to look "normal". :crying:

[Miss Marple]

Thank so much for the link. I'm not sure how severe his PE would be considered. All the websites I found only show very extremely severe forms of it. I'm just worried about how big it will get since it has grown significantly over the past 2 months. Guess I'll have to wait for the physician to tell me whether it's severe or not :D

[Chris in VA]

Just a tiny thing--my goddaughter had this, and had surgery. It went fabulously well. One small thing was that she had some trouble sleeping after her chest expanded. She could breathe so much better, and didn't get as tired as easily.

[Heather in Savannah]

my son has this condition and no Dr has ever said anything about it. He is a teen, and will not be seen without a shirt, so is obviously self conscious about it. Wow! You could knock me over with a feather right now.

[frogpond1]

up and over. He had the surgery years ago in high school I think or jr. high. I think it was a good choice for him both physically and emotionally.

[Laura Corin]

It has not caused him any physical problems (he cycles to work nine miles each way and is the local club tennis champ). He was teased a bit as a teenager, but it wasn't a big deal (he feels that kids always get teased about something).

 

I'm sure that surgery is worthwhile if it's causing a physical problem. Otherwise, I'd have to be convinced.

 

Laura

[dawn of ns]

That's what it's called! Both my brothers had this. One's case was mild and h didn't have surgery. The other's was more severe and he did have surgery and it made quite a difference for him. I had forgotten all about this.

[Miss Marple]

I was surprised at how common it is - mainly in boys. But cases can vary in severity over quite a range. My oldest son's PE was larger as a child (than his brother's as a child) but now he looks just fine. But this son's looks like someone pushed a small saucer into his chest (it's about 4 inches in diameter and probably a little over an inch at the deepest point with a rib crossing into the depression). His ribcage looks twisted and off center. He's really skinny to begin with (6 ft and 118 lbs) so it is very obvious.

 

It's rather hard to know how much it is affecting him because he is the quiet type and will just take himself off to bed if tired. He is also growing like crazy and I know that growing teens are also always tired - so how much is caused by the PE, I can't determine.

 

I don't know if he'll need the surgery at this point, but it makes me feel better knowing that it has been a successful surgery for those kids mentioned here. Thanks all.