PE Mom - glad to hear your son is doing great as well! My son's annual follow-up is scheduled in August. We have a trip to Florida planned and have been thinking about that PE/PC has been the furthest thing from our minds.
jnettlehorst - I'm sorry to hear of yours & your son's bad experience after the epidural. I promise it does get better...I sure hope he is starting to feel better now. The best things for my son's recovery were the breathing exercises and walking.
It really is great once you get to this point. After all the pain he went through he said last summer was the best summer of his life because he got rid of something he hated - his chest! The memories of the pain fade but the new chest remains. There is a boy at my son's school who has (or had now) a rather bad case of PE and had his correction done this month. He wasn't even aware it was something that could be fixed until talking to my son. Now another bad chest is history! I think it's important that we do our part and spread awareness. You never know who will be listening and benefit from it. Read More...
Wow Pectusexmom. I am not a doctor but it would make sense to have 2 bars with the Haller index like that. My son's surgeon explained to us that exactly why she wanted to do 2 bars to evenly distribute pressure and avoid pain and bar slippage. Plus she does not use stabilizers. And my son's Haller was only 3.3.
He has 2 bars and stopped having pain completely after 4 months after Nuss. And is also lifting weights in school and has no problems or limitations with that. He is 16 and now already Junior in high school.
Yet the numbness is still there in certain spots but it is expected and normal. He is 11 months post Nuss. Did you share your concerns with his surgeon? Read More...
I love reading about all the different pain treatments. I wish we had known more about this part of the process before we went into surgery and recovery. I also wish our doctor's office and hospital had given us more information and/or knew about more different pain treatment options. I feel this was the worst, most stressful part of our son's recovery and one that really could be lessened if everyone involved was more knowledgeable, had more things to try, and didn't just go with their one standard proceedure.
I hope everyone thinks about and takes the time to read all the wonderful info. on pain management that is posted on the website. Read More...
I personally like the one stabilizer that is in this picture. Satbilizers are a real part of some people's surgeries and make a difference in their recovery and life after surgery. I think it is important to show one so people know they are a potential part of the procedure. Then, people will know to ask questions about them and find out more about them.
Thank you for your well worded response, I needed that. I haven't talked to anybody about this for a looong time.
Honestly though, you look pretty good compared to most on this forum, but I know what it's like to not feel normal.
That's good to know, however I am pretty scarred by this, since I don't have this condition since forever, but instead since I started getting into puberty, at least that's how I remember and judging by my old pictures when I was a kid. It kinda just "grew" on me, so I'm really having a hard time accepting my chest in it's current form. Fortunately, a plain T-shirt hides everything well and I'm not afraid of the wind, which is not the case for many. I'm thankful for that. A form of social anxiety has developed in me, I guess, especially in the summer when someone may ask me to go do an activity which includes taking my shirt off (e.g. swimming) - that's like a nightmare situation for me, since I've done a pretty good job hiding this from everybody.
You could also opt for bracing instead.
Hopefully our bracing expert will see this thread and comment.
I'm bracing for him to show up.
Sounds good for a beginner strategy. I can use my hands to depress my lower ribs, and I'll look "normal" again until I let go , so a proper brace may be just what the doctor ordered, but the only braces I've found is LaceIT (www.laceitpe.com), a certain doctor from Brazil (www.orthopectus.net) and PectusBracing (www.pectusbracing.ca)... and all (except LaceIT, which doesn't look sturdy) require on site evaluation and have no visible pricing, so I'm in the dark here
I was planning on posting this in a certain other pectus message board... but it now requires payment in order to be able to register. Disgusting. There are many people with PE/PC and yet there is so little discussion boards online. Hopefully this forum will be a good replacement.
Anyway, I'm 25yrs old, I have PE, but my main issue is the rib flaring. Here are the pictures (taken with a smartphone with and w/o flash):
Album: imgur.com/a/JYMpj (no flexing, I may have stuck my stomach out too far perhaps)
How bad am I? I know there's surgery to fix PE, but what is the common procedure for fixing flaring ribs? I'm very self conscious about this and even posting these images online is quite an accomplishment for me. Read More...
Good to hear about the bracing and the statistics! I have no idea what kind of metal is used for the bars but I had two people in the same week tell me about a song that is on the charts right now called "I am Titanium". I chose the name on a whim...couldn't think of anything else. I also like the idea of being "bullet proof" or confident like the song implies although I'm old enough not to worry too much about what other people think. Read More...