Personal Experience with Pectus Excavatum

Hi S., my son is 14 and has an inverted sternum. Because of this and other symptoms (long fingers and arms, joint flexibility, etc.) he was eventually given an echocardiogram and found to have an enlarged aorta, which THEN led to a diagnosis of Marfan's Syndrome. His inverted sternum is not causing him breathing problems, but he was having really bad chest pains which doctors attributed not to the sternum but to costonchondritis (inflammation of the joints in his ribs). I don't know if that was because of the Marfan's or not. Anyway, my son's pectus excavatum (that's when it goes inward, right?) is not severe enough for doctors to have advised surgery, so I'm sorry I can't help with any advice there. I just wonder if your daughter has already had an echocardiogram to check for Marfan's since that (inverted sternum) is a characteristic of Marfan's. Let me know what happens at the doctor's. I'm curious. Good luck, too :) L.

My stepson has Pectus Excavatum and has had recently all the testing that they recommend for it because of the danger of the heart valve problems and the constriction of the sternum on the lungs and heart. He's tested out fine. He just turned 18, so most doctors said it was a bit late to be wanting to do surgery for the correction of the inverted sternum, and apparently at this point would be a lot more painful with longer recovery. He chose not to do it. He doesn't have Marfan's syndrome but I worried he might due to some of his body type characteristics.

There are several different surgeries, so the best thing to do is find a good thoracic surgeon, a specialist for this particular problem. I had to fight my husband to get him to the right doctor who specializes in Pectus and not just a general surgeon!

http://www.pectusinfo.com/facts.htm
This is a great website, also it mentions the Pectus Severity Index. Get your child a Index number correlation, so you know the severity.
There are tests that should be done, not just at rest pulminary exams but ALSO stress tests. My stepson doesn't have problems sitting around, but does when he's active and trying to play basketball, or running.
His doctor also said some of his pain could be coming from the costocondritis.
God bless and hopefully you can find the solutions you need for your child.

Hi S.,

I believe my son has Pectus Excavatum. The pediatrician mentioned something about it at his 3 month appt an he is now 8 months+. He made it sound like nothing - just a variance in his build. I believe that this has ran in my family - at least I know my brother and grandfather had it. My brother complained about it through junior high time period, but the family doc at the time dismissed it. So, I am curious to know what you find out.

B.

My son has this. He is only two but it has caused me a great deal of worry. He has asthma and I suspect that his PE has alot to do with it. I was told nothing could be done about until around puberty. So I am really of no help to you. This board has a lot of info

http://www.pectusinfo.com/board/today.php

M.

PLEASE read! I would like to speak from a personal point of view as someone who has and is dealing with P.E. First I will give a bit of info on the specifics of my p.e. and myself. I am 27 years old and was born with p.e. From the lowest point on my chest my sternum is about two inches sunk in.
Growing up was hard once i reached a certain age of around 3rd grade once I was kind of the age of understanding. At first it was more just mentally "degrading" for lack of better word. I had very low self esteem and have pretty much all my life, but it was my freshman year in high school I was diagnosed with a heart condition. I was placed on medication and no longer could play sport. I soon dropped out of high school due to problems with medication and a growing issue with my heart. I dealt with this until I was 19 years old. I then had heart surgery which for the most part has fixed my irregular heart beat.
Since I have started to experience breathing problems and a LOT of upper and lower back pain. I am currently looking into the surgery although I am told I am to an age that is not recommended for the procedure.
Now I really can't say these medical conditions are directly related to my p.e. but I have read many testimonies from others with p.e. experiencing the same issues.
If not to at least try and prevent possible medical issues then at least for your child's mental health and self esteem I would highly recommended looking into the corrective procedure to, if not fix, improve your child's p.e.
I hope this helps and I really wish not to scary anyone, but as someone dealing with p.e. in my later days I can say it hurts... In many different ways.
Here's a site that explains a bit more, http://my.clevelandclinic.org/disorders/pectus_excavatum/....