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Below are the 18 most recent journal entries recorded in Pectus Excavatum's LiveJournal:

Thursday, April 17th, 2014
4:51 pm
[ext_2541525]
I know this is old, but it's helpful!
Hi! I'm a 17 year old from Illinois who has had PE since about 4 years old. I have always been the weird one out of my group of friends due to a crater. I was "bullied" at camp for showing up shirtless when swimming and to the rest of the camp I was known as Cannonball Curt. Though I'm not really one to care about past experiences, I want to join the U.S. Army, but they won't accept me with my PE. I'd have to get it repaired in order to go. I'm at a loss of what to do and was wondering if anyone had any information or success rates on the surgery., Thank you to anyone who replies.
Monday, June 4th, 2007
1:07 am
[cooploou]
Just started this....in what seems like a ghost town journal
I am a 19 year old guy from Michigan who has PE and is seriously considering surgery (granted, something more like the NUSS procedure with the corrective bars). I know 19 is claimed to be older than normal for this surgery, but I should do it now before I am 21, right? Anyway, I have had breath tests and heart tests/scans and both my Doctor and Cardiologist said that I am very healthy; that I breath normal and have a normal heart and valves. That is good to know. However, the psychological factors really push me towards wanting surgery. My mother doesn't want me to get it done (for fear of the surgery), but the success rate is high and it doesn't seem to be that bad a procedure. The biggest reason other than not wanting to take my shirt off in public would be that I want to build muscle and tone my body. I want pecs, but the more I work on my chest (pumping my pecs up), the deeper the concave appears. Thus working out will make me look more deformed. I also feel pain when I workout (not all the time, granted). Mainly and stretching sensation as if my chest is being cracked open. This is now good.

So, I guess my question would be if anyone knows how insurance works. Can I get the surgery covered let alone start it with these reasons (being mainly psychological)? Also, any feedback on anyone that went through the surgery would be wonderful.

Thanks.

PS...We really need to keep this profile on PE alive. I was so happy to find it on google, but no one has talked since 2006 and thus I worry no one will after this...
1:05 am
[cooploou]
We need to start talking more on this...
Hey everyone,

I am a 19 year old guy from Michigan who has PE and is seriously considering surgery (granted, something more like the NUSS procedure with the corrective bars). I know 19 is claimed to be older than normal for this surgery, but I should do it now before I am 21, right? Anyway, I have had breath tests and heart tests/scans and both my Doctor and Cardiologist said that I am very healthy; that I breath normal and have a normal heart and valves. That is good to know. However, the psychological factors really push me towards wanting surgery. My mother doesn't want me to get it done (for fear of the surgery), but the success rate is high and it doesn't seem to be that bad a procedure. The biggest reason other than not wanting to take my shirt off in public would be that I want to build muscle and tone my body. I want pecs, but the more I work on my chest (pumping my pecs up), the deeper the concave appears. Thus working out will make me look more deformed. I also feel pain when I workout (not all the time, granted). Mainly and stretching sensation as if my chest is being cracked open. This is now good.

So, I guess my question would be if anyone knows how insurance works. Can I get the surgery covered let alone start it with these reasons (being mainly psychological)? Also, any feedback on anyone that went through the surgery would be wonderful.

Thanks.

PS...We really need to keep this profile on PE alive. I was so happy to find it on google, but no one has talked since 2006 and thus I worry no one will after this...
Monday, October 23rd, 2006
12:44 am
[quba]
Monday, October 9th, 2006
1:17 pm
[ellusivebadger]
Keeping it alive...
I just thought I would post, and ask shnookie24 how things were with her daughter.
This community is a great potential resource for all those wanting to understand their own condition better, and to talk to others about how it effects them.

I know, for most, day to day things dont change, and there is little point in telling everyone that this is the case.
For me, id be interested to hear from those who have had the operation, and has it improved their lives?
Do they feel physically fitter? What other impacts has it had?

For myself, I percieve my PE to be relatively severe, however, I only suffer from very slight lordosis, and scoliosis, that being said, I still do alot of physical activities.

I am at the gym frequently and progress at the same rate as my peers, I go climbing (rocks, and training walls) with friends, I also worked as a Paintball marshall for the last 5 years of my life, and play alot of Airsoft. (both very physically demanding past times)
I was however advised by my personal trainer that my Cardio was below average, but by specifically aiming to improve this, it has.

Whilst I will fully admit, at the age of 24 I still have problems with self confidence sometimes, this is something I am slowly overcoming.
Mainly thanks to a loving partner.
As far as the physical limitations of it, how do I know if the things I am doing are any harder for me, than for someone without PE.
Therefore, when I see someone who runs faster than me, i see it as a challenge to catch up.
This approach to things has allowed me not to be held back at all by PE.
Infact it may even allow me to use it as a positive feature.

This was written because i would hate to see this community die,
and I hope that my experiences prove to be of intrest to others.

Thanks,
Chris
Southampton, UK
Thursday, May 18th, 2006
11:54 pm
[vaguecomplaints]
bar removal
well it looks like my pectus journey is more or less over. about a week ago i had my pectus bars removed four years after insertion. the operation went well. oh that reminds me i should clarify, most people only have one bar put in, but i had two since the first didn't really achieve the desired result. anyway, the removal operation went much easier than the initial. i stayed in the hospital overnight and suffered a bit of pain that evening, but they attribute this to some calcification that built up and underdosing my pain meds because of my age (i'm 19, fairly old for this operation). i'm told the operation took less than two hours and i returned to my room after the operation only semi-groggy. about two hours after i was walking around, eating food, etc.

so overall, i'd say the entire procedure, from beginning to end, was very positive for me. i'd recommend it to anyone who's considered the operation in the past. i also went through shriner's hospital in springfield, MA, who provided the operation free of charge/insurance, another plus.


p.s. they let me keep the bars too.
Saturday, January 21st, 2006
4:00 pm
[amberjsnow]
dOeS anyone talk in here?

Current Mood: curious
Thursday, July 28th, 2005
3:34 pm
[ohfiddlestix]
Smoking.
Anybody in here smoke and feel like it affects you worse than your peers that smoke?

Current Mood: curious
Tuesday, June 21st, 2005
9:44 am
[ellusivebadger]
I know things are quite quiet on here at the moment.
And i was just doing a bit more background reading.

The link on your info page for the Nuss and Ravitch procedure has changed.
Its now Nuss and Ravitch Procedure

And im pretty sure someone has already mentioned this on here, somewhere in a reply, but i found this to be a very valuable source of info.
MSN Pectus Excavatum Listserve

Just thought id share the wealth.
Monday, May 2nd, 2005
9:05 pm
[vaguecomplaints]
so i got something in the mail from shriner's hospital telling me my surgery date for nuss bar removal. june 30th i'll be heading out to get those bad boys removed (i have two bars in me). i have high school graduation three days before that. some present, eh? apparently getting them out isn't nearly as bad as getting them in, and maybe they'll let me keep one. i'll post a pic, haha.

i hope you're all doing well.

-danny

Current Mood: chipper
Wednesday, February 9th, 2005
12:12 pm
[quba]
Hey everybody! I have the worst case of Pectus Excavatum I've ever seen. Mostly, it's because my doctors broke my ribs during my open-heart surgery.

I really like my chest hole. It makes me totally different than everyone else, and I love putting things in there, and scaring pretty girls, and showing it off.

Here's a picture of my chest hole, and the Mardi Gras beads I got yesterday for showing them.

Lj cutted, for your pleasure.Collapse )
Thursday, January 6th, 2005
3:25 pm
[ellusivebadger]
Heres the question?
Theres very little information on the web about PE.
Infact, its sad to say, that most sites that ive found links to have died.

But from what ive read, there's a number of ways with which PE could be corrected.
But would you?

This is part of me, and i dont just mean physically.
I know that it can hamper self confidence, but isnt it almost "surgical self harm" to have it changed?

From what i can tell, nearly everyone here is 18 or older. So has it not become part of who you are?

About 8 years ago, i had a number of surgeons look into "repairing" me
(and those are the words they used) but they advised against anything being done, as I too was not effected enough to justify it. Im glad i didnt.
Im just interested what other people have to say, having grown up with the same thing?
Tuesday, January 4th, 2005
11:04 am
[ellusivebadger]
This has taken me a little by surprise.
On November 1st 2004, i made a post on my journal about PE.

"ok, so the other day, someone said to me, "is there a medical name for the way your chest is?"
And it dawned on me, ive lived with this my whole life, called it a "pigeon chest" and had done with it.
But as everyone knows, any given ailement has a more fancy name, that no-one can pronounce.
So i went on a hunt... pectus excavatum.
Not quite as fancy as i was hoping for.
But better than pigeon chest all the same.

The End."

Its sad but true, i am 22 years old, and have never known the real name for this condition.
It was the first time in my life i had ever read about it, or properly wanted to know more.
I have had it, and been aware of it for as long as i can remember.
Generally, it has no impact on my life.
All my friends know i have it, ive never been kicked out of bed for it :P, and i live a very active life.

But i have to say, as confident as i am in life, i havent been to a pulic swimming pool, or topless on a beach for over 2 years.
Its nice to know theres a little corner of the web, were others have gone through life with this too.


Happy New Year guys and girls :)

P.S.
One of my mates replied to the post i made in November. Thought you might like it
"pectus excavatum????

Bugger that, Chris from now on, your chest condition will be referred to as Radicalus MaxChestum Baby! And yes, 'Baby' is part of the scientific term."
Sunday, December 5th, 2004
4:43 pm
[shnookie24]
Thursday, December 2nd, 2004
8:19 pm
[vaguecomplaints]
hello everyone
so i was born with pectus excavatum. however, i didn't really notice it until 12 or so. it started getting pretty severe, and it really starting bothering me emotionally. i refused to go to my friends' pools and whenever i had to take my shirt off i did it away from people.

anyway, i'm not sure about you other guys, but i got mine corrected when i was 15. i had the nuss procedure done at Shriners Hospital in Springfield, MA with my brother who also had it (made the experience much easier). It's a childrens hospital and the ENTIRE procedure is free. You don't have to hassle with insurance or anything of that nature. The only thing is you have to be under 18 to get it corrected. It was definitely worth it for me (although I can understand if other people wouldn't think it was right for them).

so if you want information about the surgery experience itself, the hospital, or post-op stuff let me know.



btw ignore my poor grammar, i'm tired. haha
Friday, June 25th, 2004
4:03 pm
[ohfiddlestix]
I have pectus excavatum.
So this community is fairly d.o.a., but I felt the need to join anyway so that I could post something.

I've had PE since I was born (duh), and it has never, ever bothered me. At least, not when it came to my opinion of my body. However, I do get out of breath EXTREMELY easily. Walking up a flight of stairs too fast can leave me out of breath.

However, despite that, I've managed to lead a fairly normal life.

About a year or so ago, my mother decided to start seriously investigating my defect, which meant that I had tests done and cats scanned (haha? joke? CAT Scans?). I also went to see a surgeon.

I managed to convince him that the PE didn't bother me (although it does, just not very much), and he told my mother that unless it was seriously affecting my life, or I was seriously bothered by my chest's appearance, he wouldn't recommend surgery, because the surgery to correct it is a major operation.

From what I know, boys are more often born with this than girls, and if you're going to have corrective surgery, it should be done before you're eighteen.

So that's my story. I'm living happily with a fairly mild case of pectus excavatum.

Drop a comment if you have any questions.

Current Mood: contemplative
Saturday, November 29th, 2003
10:34 pm
[arphin]
Hello!
I'm glad this community exists, even though there doesn't seem to have been much action around here :)
I have PE (among other things) and I'm real glad someone started a community on the subject. I would've if you hadn't. (Well, OK, not really.)

arphin
Sunday, November 23rd, 2003
12:00 am
[shnookie24]
Hi New Community
HI there. I just started this community because I realized there is NOT one on LJ for Pectus Excavatum.

MY name is Stephanie. I found out a couple months ago that my two year old daughter has a mild case of Pectus Excavatum. I have been reading and learning all about it.
I had never heard of it before and yes I have been very freaked out.

I thought this would be a great place for other parents, people with PE to just come and talk about their life or experiences with PE and maybe surgeries they have had or plan on.

Hope everyone has a great time here and gets imformative information.
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