I have Pectus Excavatum

[sarah_16]

Hi, im 16 and I've got Pe.. I didn't actually no the name of it till last night when I looked it up, I want to no if anyone knows if getting surgery to correct PE does it really help? my breathing sucks and I can't really do sports becasue after 30 seconds of running I have to stop so I'm wondering if I did get the surgery I would be able to be in sports. or maybe even pass gym because I can't stay in the heath tests where you run back and forth until you can't anymore for very long, so I get yelled at and failed. I'd also love to be able to wear a bikini, that may sound stupid but it would make me happy.

Also does anyone no how much the surgery costs?

If anyone can answer these questions then thank you.

[The Slice]

Hi Sarah. With PE, a question comes to mind, are you really tall? That is to say are your fingers, arms, legs, and toes unusually long? The reason I ask is that Pe, or Pc (pectus caritinum) are often associated with something called Marfan's syndrome. If so, it can possibly lead later to problems with your aorta (the big vesel coming out of the heart and supplying blood to the body. Well anyway, yes PE can be fixed. I'm guessing from what you have said that it is fairly severe. What's happening is that the rib cage sinking in, is compressing your heart and lungs and this is why you are having trouble with physical activity. Don't worry about not passing gym class, you have a medical condition which affects your abilities, and that has to be taken into account. Your teacher/coach shouldn't be yelling at you about this, and if so, you need to get your parents in on this.

[sarah_16]

Tall and skinny, I'm taller then my parents. My fingers and toes are long but I don't think that unaturel.. they seem pretty normal. I can't seem to gain any weight but I figure thats just my metabolism.

By the way, whats Marfan's syndrome?

Nevermind, i looked it up and I kinda wish I hadn't.

[pat]

Sarah, I have PE, all my kids have PE and we've all been checked for Marfan's; and we're all tall, skinny, long fingers, etc. . . And none of us have Marfan's. The surgery to correct PE is, the Nuss Procedure, I'm quite sure that's what it's called, I guess it's improved greatly since I had surgery to correct my own PE. Don't worry . . . but yeah, better safe than sorry to check for Marfan's. Pat

[sarah_16]

I'm not going to get it checked but its nice to no. thanks.

[The Slice]

Didn't mean to upset you, and I'm not saying that's what you have, but I was just wondering. I would go for the surgery now while you are young. It will make a huge difference in your life and you will bounce back from it much quicker and easier than you will if you wait say 20 or 30 years. I'm an adult, but I remember what it's like not being able to keep up with others. I was born with a congenital heart defect which wasn't corrected until I was almost nine. You were asking about the cost. If your parents have medical insurance, the surgery, or the majority of it, should be covered under the insurance. What isn't covered can probably be paid in installments. While the decision should be yours, it would be good for you to get your parents involved and sit down and talk it over with your doctor, and the surgeon who is likely to do the surgery. Hang tough and let us know how things are progressing.

[sarah_16]

Is it medical surgery or cosmetic surgery because all medical in canada is covered. plus I think I might wait until I'm 18 so I can go on my own.

[The Slice]

I don't know for sure. What I would do is talk to your regular doctor and see what they have to say about it. Check out the following wesite on PE, I warn you there's probably more information here than you'll ever want to know about it as well as pictures that some would consider of a sensitive nature. There's alot there, and most of it is geared towards physicians. PE

I am not really familiar with the Canadian healthcare system, but you might want to make sure that you will still be eligible for the same benefits at 18 as you are now before making a decision to wait until later. I think I jumped the gun a little when associating PE automatically with Marfan's syndrome, however (and I did not read it thoroughly) there was something in the article about a correlation between PE and an increase in the incidence of Mitral Valve Prolapse. The article does say that there is no definitive proof of cardio-pulmoary compromise caused by PE. It makes me wonder if your problems may be related to MVP. I would browse through the article, and then bring what questions you have to your own doctor. It may help to print out the article for them to look at. What ever happens, I wish you the best.

[sarah_16]

Thank you for all the help.

[mariaf]

Pat,

Just wondering if your children have undergone corrective surgery for PE. You mention that you did, right? My understanding is that the surgery is warranted in some cases and in others it is not. I guess as with any surgery the risks and benefits should be weighed by a qualified physician.

Good luck Sara. As with scoli, PE does not appear to be an emergency or life-threatening situation - just one that should be treated or evaluated by a skilled doctor.

[pat]

Pat,

Just wondering if your children have undergone corrective surgery for PE.

Hi Maria, all my kids have had a work-up w/cardiologist, and their PE is small, no need for surgery. Mine was interfering w/heart function. pat

[mariaf]

Pat,

That's great that your kids did not require surgery - as I understand it is a fairly major procedure. Sounds like you did fine from it though

take care,