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Wednesday, December 3, 2014

Speculating on Pectus Excavatum

"Its not just cosmetic..."

Well, the good news and the bad news- I'm sure you've noticed less and less of my posts lately, I've been a little distracted; researching and trying to help my 10yr old.

Apparently the motrin and now the steroids have not helped to bring my son's pain down. He's on his last day of his weeks worth of steroids and today he woke up at a pain scale of 7-8 this morning. I'm going to give him some motrin and hope it works enough for school. *sigh*

They are saying the pain is due to something called Costochondritis more due to the fact that they don't know what is causing his pain than anything else. It came on suddenly and without explanation.

What is Costochondritis?

Costochondritis is an inflammation of the cartilage joints in your chest. It is typically caused by a sudden increase in strenuous exercising, or 'over doing it'. You can also get it from bending, twisting, or lifting something sharply or in the wrong direction. Athletes have been known to get it from time to time.

However, with my son it is more than just the areas with cartilage that are hurting, and it started before any major PE stuff had started at school. His actual ribs hurt him all the way out to the sides.  Add in the constant pulling in of the rib cage due to what I can only assume is a growth spurt and you now have Pectus Excavatum that has turned from being just a cosmetic defect to something that now hurts worse than any pain he has ever had in his life.

To see this picture you can tell why!

Pectus Excavatum
Those aren't muscles or moobies- thats all rib cage!
Hint: its supposed to be flat.

This is the first time he has hurt this much this early in the morning- and yes the pain has been getting worse, even through all the restricted activity, motrin, icepacks, heating pads, and now a full week on steroids which were supposed to bring the inflammation down. We've been dealing with this pain since August of this year. He also doesn't have the stamina to participate in gym or sports like he did even just last year, instead he gets dizzy and feels like he has to gasp for breath. Frankly, the sudden and progressive severity of these symptoms, especially the pain, is what has me the most concerned. Thankfully we are scheduled for testing soon to get the pre op stuff set up.

What is Pectus Excavatum?


Pectus Excavatum is a disorder where the cartilage grows faster than it should and causes the rib cage to bow inward. Some of the more typical symptoms are shortness of breath and dizzyness upon exertion and chest pain. Others have difficulty swallowing, irregular heart beats, and even passing out in some cases. In most cases the heart is even pushed off into the left lung space or compressed by the sternum.

In order to figure out if you are a candidate to have Pectus Excavatum repaired you will need of a CT scan. From there they can determine the amount of space in your chest which they label the Haller index.  Anything over a 3.2 is considered severe enough to warrant surgery.

What kind of surgery?


The most common repair if you are symmetrical and anywhere from 8-14 yrs old (they prefer to get you before you stop growing) is the Nuss procedure. With this they make a small incision and slip a metal bar under your rib cage to push it out and brace it for 3-4 years. You will be in the hospital for almost a week (which seems to be the norm for any chest surgery).There is a lot of pain and a month long (or more in some cases) recovery time but the pain does go away. Some people continue to be a little tender in the area of the stabilizers on the side until the bar is removed.

 At the end of that 3-4 yr period they open that same small incision and slide the bar out, you get to go home the next day. You can find out more about the Nuss Procedure here where it was developed. 

If you are asymmetrical, or if you are older, than sometimes the Ravitch procedure is used. More on the Ravitch Procedure here.

 The surgery doesn't remove the root cause of the problem, which is the overgrowth of cartilage- it just sets the rib cage back out to encourage it to grow correctly again. Few doctors specialize in handling the effects of Pectus Excavatum and don't really know how to treat the symptoms or the root cause of the problem. Due to this, there have been rare cases where Pectus Excavatum has come back... even after surgery.

My child has Pectus Excavatum... now what?


First things first, ask for a CT scan if only to get a base number to keep an eye on as they get older.

Second, ask for a referral to a pediatric surgeon who specializes in chest wall repairs, specifically the Nuss and Ravitch procedures.

Take pictures for records


Preferably once a year in a dimly lit room- the shadows help show the depth of the issue. I've found the best pictures can be taken from the side angle when the child is laying flat on the floor. Angle the camera so that you can see the full side view of any flaring of the bottom of the rib cage, bring the camera up just enough so that you can see into the bottom of the indent. Allow shadow play to highlight the indent as you take your picture.

Bear in mind that while a picture may speak a thousand words the defect is often much worse under the surface. In my son's case, his skin stretches over and hides the deepest part of the defect.

Don't let them feel down about themselves

(Decide which approach will work best for your kid.)

*For us, we just didn't mention it very often and our son never really grew to think twice about it. In our case though he isn't around many other male children with his shirt off. We have him wear T-shirts to the beach because my kids burn easily, and any time he was in a pool it was only ever around family. In school they don't change in the locker rooms, and he is not in school sports yet that would require him to change at school. We have done recreational department baseball during the fall but all the kids wore their uniforms from home and never had to see each other shirtless.

*Your case could be completely different if your son has brothers or friends without Pectus Excavatum that may see him without his shirt on. To help alleviate the concerns over appearance I have noticed that some parents will help their child find a silver lining of sorts. Namely, using their indention as a snack holder or resting a cup in it for fun. The kids seem to enjoy this.



Now I know this is more of a personal post than the typical sci-fi related material that I normally post but it has come to my attention that Pectus Excavatum is not a very well known condition and I'd like to do my part to help.  I have yet to find an all inclusive website that compiles all the research and medical journals into one place but Google has been really helpful. There are also many groups on facebook that you can join where people are more than willing to share their stories and let you know what worked for them.

I'll be sure to keep you guys posted...
If you have any suggestions or questions I am all ears.

5 comments:

  1. For everyone following this... Son's surgery went REALLY well. His haller index turned out to be a 4.5- well into the severe range. All the costochondritis and breathing issues disappeared right after surgery! Within three weeks he was off all pain meds. He's doing GREAT!

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  2. I'm very glad your son is doing well. I saw the photo above and can tell you that our boys were matched in severity. My son didn't have surgery until 15. At the time he was the youngest person his Surgeon's had ever performed the Ravitch Procedure on.

    Let me tell you, knowing my child had NO protection on his chest and being able to see his heart beat...through his tshirt...from the other side of the wall is horryfying.

    He is now 24 and has done well with getting to his new "normal". He has, in the last 4 years, developed Costochondritis but we put that to working out. Besides, he can breathe, his heart has room and I no longer worry about his collapsing. Costochondritis is annoying but it could be worse.

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    1. Our Costochondritis was BAD- when it started affecting his schoolwork and the pain would not go away no matter what we gave him- I knew it was time!

      Glad your son is doing better! Wow he was collapsing? Was that due to not being able to breathe?

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  3. I truly feel for your son because I also have a PE. I am 47yrs old and I definitely can relate with him! In 1973 I was given an option to repair my chest but it was more like an open heart surgery and I decided not to do it. Instead I took martial arts primarily to protect my chest, started at age 13 to 25...I daily go without my shirt on because I've got the mindset of if anyone doesn't like my chest, they don't have to look at it. But, now I have a knot at the base of where my ribs come together/base of cave in, it's almost 3 inches long and 2 inches wide...Dr's aren't exactly sure what it is cause within 3 wks it's grown and gotten harder plus the pain is unreal...CT Scan is getting scheduled...

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