Pectus excavatum (sunken chest) - anyone have experience with this?

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Posted 11/19/2008 by hayjake in NSBR Board
 

hayjake
My kids have better lives than I do!

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Posted: 11/19/2008 1:06:16 PM
My 13 yo DS has had it since birth and has been asymptomatic up until now.

However, he has had chest pain twice in the past week on the left side behindish his ribs. He just told me about it tonight.

Apparently he has had pain before also. It seems to always happen when he is sitting and he said it feels as if something is pressing right behind his ribs.
Also, he notices it if he is sitting and bends down to get something, like in the car.

I have called his doctor nand am waiting for them to get back to me.

Googling the name scares the beejeebus out of me! His doctor is definitely aware of the p.e.

Anyone have any experience with this?

hokiegirl
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Posted: 11/19/2008 3:00:54 PM
Hey Tracy. My 13 yo ds has it. I'll peamail you.

jcm28
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Posted: 11/19/2008 3:44:46 PM
Just a thought, but he is tall? I have seen a couple of Marfans young adults in my unit over the years. Perhaps mention it to your doctor.

Janet

mollyw
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Posted: 11/19/2008 3:55:51 PM
My neighbor had surgery for his 1.5 years ago. They put in the bar and he had a horrible reaction to it. He had to have surgery and was left with an infection. It was so bad that when he finally went back to school, he had to carry the backpack with his iv antibiotic for 4 months.

His parents researched the best place to get this fixed again. They narrowed it down to a hospital in Germany or Virginia. They repaired it early June with a titanium bar and did the plastic surgery at the same time.

One of the biggest headaches the first time around was fighting the insurance company. they were prepared to pay opp but after a lot of fighting the insurance company paid up.
The second time it was covered from the beginning.
Yes, he is tall and just turned 18 now.

s1i1s1
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Posted: 11/19/2008 6:04:28 PM
DARN! I just typed this all out and hit a button and it went away

I have two grown children who have it. Both are fine.

My son had it much worse than our daughter did (degree wise), and he did not have surgery for it. He is now 26 and tells it is his "M&M cup" holder now. We did have the option of having surgery for it, but chose not to - it was strictly for cosmetic reasons.

The Dr said it was generally genetic and my mom did have it as well. Several times our son complained of pain with it, I panicked and took him in - and it was determined to be just 'growing pains' and once was bronchitis. He was so tight I didn't know, but the Dr gave him meds, it started breaking up and got better, so that is indeed what it was. He does have occasional achiness from it due to the spine curvature that is common with it.

Our daughter had heart problems, but not associated with the sunken chest - it was something entirely different with the electronics of the heart (supraventricular tachycardia) and she is fine. She does have back issues, but I am not sure it is from that - maybe she will hop on here and tell you. I will send the link to her.

I do have a friend who's son had it much worse than either of my children. He had less than 2" between the outside of his backbone and the outside of his breast bone. He would quit breathing at night. Long story, (she was in an abusive relationship), but when she finally took him in to a Dr they operated the next day. He was the worst case the hospital in New Orleans had ever seen and he was used as a study for the American Medical Association or whatever that is called. They were amazed he had lived 10 years by the time she took him in. He was horrible; stopped breathing regularly, wheezed all the time, had severe scoliosis and could not put any effort into anything without getting out of breath.

They did the surgery and he had no bad effects from it and lived the rest of his short life doing great. He was tragically killed in an automobile accident at 25 years old. The surgery was done 15 years previous to the accident.

All of this to say we had one adult (my mom) and 3 children who grew into being healthy adults, one with surgery and the others without - and all did just fine until the car accident.

Out of 4 people we had pretty good results, so I bet your son will be fine. As I said, we did not do the surgery on our son as it was strictly for cosmetic reasons. We chose not to endanger our son for that.

Take a deep breath and wait for the Dr to call. Hopefully he is just fine.

Good luck and I will keep your family in my thoughts and prayers.

CajunSis


h*pea*ing
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Posted: 11/19/2008 7:10:55 PM
DH has it, but it really isn't noticable. DS was also born with it and we've called it his chest divot.

His isn't real bad and hasn't had a lot of issues from it. When he was younger and it was more pronouced he would wheeze quite a bit and have other issues with his lungs that we'd have to get a bunch of drugs to clear up.

As he's gotten older his divot has become less pronouced and his breathing issues are very rare now. Our Dr recommended to leave well enough alone as many times it doesn't cause any problems.


ETA-Ds is only four so hopefully it doesn't cause problems later on.

mirabelleswalker
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Posted: 11/19/2008 7:14:52 PM
I work in a surgery unit and I think I see an average of one teenage boy a month who is having the operation for PE. Most of the boys are VERY EXCITED about having the surgery. At that age, they are so concerned with being like others their own age. I think that the physical differences start becoming a much bigger issue and the self-consciousness in the locker room is more difficult to cope with. I think if a teenager wants to have the surgery, they should be able to have it.

I have never (knock on wood) heard of anything going wrong. The bars are taken out eventually, and that surgery is usually done outpatient.


Tango1
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Posted: 11/19/2008 7:34:10 PM
One of my 8yo twin boys has it. As someone else mentioned, I am concerned about Marfan's because my son is very tall and has EXTREMELY long fingers. But then again, DH and I are tall and DS's finger's look exactly like DHs, who does not have a sunken chest or Marfans.

I*Love*Hello*Kitty
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Posted: 11/19/2008 7:42:54 PM
My 15 year old nephew was born with a sunken chest and had his surgey for it last Christmas. They placed a surgical grade bar in his ribs and it rejected. He spent alot of time in the hospital that begining part of the year. Come to find out he was the first patient the doctor had ever done that surgery on . I live 4hours away so I was out of the loop for all the details. I am sure my sister would be happy to discuss this with you over the telephone. Feel free to peamail me if you would like to contact her. We are in Florida.
Best of luck and I really hope you DS has a happy ending to his pain!

hayjake
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Posted: 11/19/2008 10:06:39 PM
Wow! thanks for all of the responses!

he is not especially tall, but growing very quickly. Hopefully it is not a sign of more to come.

My son has never seemed to have a problem with how his chest looks cosmetically, so unless there is a medical reason for the surgery, i doubt that will be an avenue we will pursue.

Like I stated in the OP, we will surely know something more after friday morning's doctor appointment.


scrapnchick
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Posted: 11/19/2008 10:28:39 PM
One of my nine year old twins has it and I am terrified about Marfan's syndrome because my nephew has it My son isn't particularly tall, he is small for his age, but he is very, very, skinny.

I keep asking his pediatrician about it and she says it isn't something she's worried about yet. Can they not test for it until they're older?

s1i1s1
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Posted: 11/21/2008 10:00:44 AM
This is s1i1s1's son

I have a sunken chest. I don't know how bad you'd consider it, but it is certainly visible with a shirt on, and impossible to miss with my shirt off. Because of it, I'm also quite "crooked", one of my shoulders inches lower than the other.

I did get teased quite a bit in school because of my chest, but I was already teased for many other things, so it really just gave the kids more fuel. That was the point in my life that I was ashamed of it, and it made me feel like a freak, like so many other things did.

As I grew up though, my feelings about my chest changed. I am very glad I never had the surgery, I have no adverse medical problems with my chest beyond bench pressing causing some pain if I do too much weight. Beyond that, I find my chest unique.

Girls who actually liked me all found it to be something "neat" and "cute". My wife says it fits her head perfectly, making my chest more comfortable. It's the perfect place to hold sunflower seeds as I'm laying around watching TV, they don't slide down like they would with a normal chest.

Your mileage may vary depending on the severity of the condition, but I know from experience the cosmetic down side and upsides. As much as I was teased, as rough as it sometimes was being different, I wouldn't trade my chest for anything. I appreciate it a lot now, and am very glad the surgery was never done in my case.

Good Luck

omarakbt
AncestralPea

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Posted: 11/21/2008 10:42:27 AM
Not personal experience but DD's now ex boyfriend had this. He had a corrective surgery his sophomore year in high school. He's a very normal 22 year old at this point. He's physically active, plays sports. He played baseball in high school.
But sorry, that's the extent of what I know.
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