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Author: Subject: My 16yo son with PE
Mom25
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[*] posted on 3-13-2012 at 08:41 AM
My 16yo son with PE


Hi, I am brand new here. My son has PE with a Haller Index of 3.6. After reading posts on this board we are trying to get a referral from our insurance company to consult with Dr. Dawn Jaroszewski at the Mayo Clinic in Arizona. I have two questions; first, my son was diagnosed with Primary Ciliary Dyskinesia. He has always had congestion and upper respiratory problems, frequent pneumonia and one area in his lower left lobe that won't clear. We have been told by his pulmonologist over the years that these problems were because of his PCD not his PE. I'm beginning to wonder now after reading over others posts, if that might not be the case. Do you think his breathing problems could be a result of his PE? That sounds stupid to ask but it's taking a while for me to change my thinking on this. Secondly, we were under the impression that his PE was only a cosmetic problem which is why we haven't pursued Pectus repair in the past. Now, after reading others posts, I'm beginning to think that his severe PE might set him up for heart and lung problems in the future, is that usually the case? Thank you for any information you can share!
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rubiks
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[*] posted on 3-13-2012 at 10:31 AM


Hi there
3.6 is not too bad of a dent, although it may be deeper if he followed PE protocols during his CT scan. PE has the potential to negatively effect many organs in the thoracic cavity.

PE, the resulting impaired cardiovascular system, and poor body image will not get better as he gets older....it will most likely get worse.

IMO get it fixed....Dr.J did mine and is one of the most competent surgeons in the world for chest wall deformities.
I would definitely recommend a consult with her.

Getting pictures posted will better help other members provide advice as well

best of luck on this journey
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[*] posted on 3-13-2012 at 11:12 AM


Mom25,

It's not uncommon for people to think that PE is only a cosmetic deformity. A lot of family doctors still think that is the case. I looked into getting the Nuss Procedure for the first time eight years ago. My family doctor at the time told me there was nothing to worry about, and there was no way my PE was the cause of my shortness of breath, chest pains and heart palpitations. I fortunately now have a doctor that listened to me, and ordered tests for me last summer that did indeed show that my physical limitations were caused by the PE. I finally got the Nuss Procedure done a month ago. I'm so glad I did it. I'm extremely happy with how my chest looks and that I no longer experience the symptoms I used to. Your son at 16 is at the ideal age for having the Nuss. His breastbone and sternum are likely still soft and easy to manipulate. I am 33 and my chest was very tough, which resulted in a lot of post surgery discomfort. If you help your son get this surgery now, it will help him avoid a lot of future discomfort as a result. I didn't start feeling physical pain until 23, but it's actually gotten worse over the years. I'm very glad I got mine fixed.

Anyway, best of luck to you. I hope you're able to get the surgery for him.




I was nussed by Dr. Mark Saxton at Gundersen Lutheran Hospital in La Crosse, WI on 2/8/12. Here's My Journal.
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pectuscoordator
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[*] posted on 3-13-2012 at 12:17 PM


Welcome Mom25,
Your son has not reached his maximum height yet because he will probably continue to grow for another 3-4 years. He is most likely now in his biggest growth spurt and as he continues to grow-his chest will continue to sink. In other words, his Haller index will get worse over time. Due to the brilliance of Dr. Nuss and his amazing contribution to medical science, he proved in his research and publications about pectus patients and his operation (the Nuss Procedure) that PE is not cosmetic. There is definitely an effect on 2 major organs (heart and lungs) and we are most concerned about the heart. You are on the right path by seeking an experienced surgeon for your son, and by finding this amazing support group!
We are all here to help!:)
Jackie




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DaveInDC
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[*] posted on 3-13-2012 at 05:48 PM


Hello,

I only have a moment, but I just want to add: As others here have said, there is no question that PE can affect the heart, lungs, and possibly other tissues. That does not mean that this is true for your son. I have PE that is about as bad as that commonly displayed on this board (I have never had a CT, but the dent in my chest is about 2.5 inches deep), but just when I think I can blame it for this or that symptom, the medical evidence points in different directions.

For example, I have long thought it caused palpitations. But after going for an evaluation with a cardiology team specializing in connective tissue disorders (i.e. their typical patient has Marfan Syndrome, and so they see a lot of people with severe PE), and reviewing my condition in detail, I became much less anxious about the condition of my heart. Immediately before my visit, I was having palpitations a few times a day. In the three months since my visit, I've had one or two, total. My PE did not change, only my anxiety about it did.

Other times, I've been sure that my breathing was affected. But in 35 years I've never had a serious respiratory infection. The closest I got was last year when my doctor diagnosed me with early atelectasis and bronchitis (I have a disease vector, i.e. a preschooler, in the house). But even at my worst, my oxygen saturation was 99%.

This doesn't mean that it isn't causing problems, that it won't as I age, or that I'm not considering having it corrected someday if/when the stars line up. But I'm also not rushing out to subject myself to what can be a very challenging procedure and recovery.

My point, I guess, is that you should definitely do your due diligence. By all means, have a consult with Dr. J. Definitely weigh the pros and cons and all the evidence, but be cautious about concluding that that PE is to blame for any particular symptom, especially if there is already a differential diagnosis known to cause respiratory symptoms. You have some time to think about it, so take the time you need to arrive at a decision that both you and your son will be comfortable with.

best regards,
Dave in DC




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[*] posted on 3-13-2012 at 07:45 PM


Ok so I do agree with DaveInDC, it doesnít make sense to blame every heart and lung problem on pe.

However, here is my opinion: there are still many doctors out there that arenít aware of pe and how it affects us. My own cardiologist told me that my heart and lung issues are not a result of pe. He said that while he is not opposed to me having surgery, it will not affect my health one way or another. I then asked him how many of his patients have pe and he replied about five. I donít think heís a bad doctor, just not very aware of this particular topic.

I think itís a great idea to see a pe specialist. Dr. J explained that my health should improve with having the nuss. I hope your insurance approves you to see Dr. J. She will examine all the facts and not push you into having surgery if she doesnít think it will help.

Best of luck to your son.
Mark
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[*] posted on 3-13-2012 at 08:20 PM


DaveinDC and Mark007

Are both spot on. Should the heart and lung never suffer from PE, fix it, repair it, remove the dent. The dent causes much damage to the brain. Remember the Insco are in business to receive premiums and decline claims. Present your case when your son is mature enough to the insco. Fight them if necessary. Pay out of pocket if necessary. With a PE repair available, make sure your son gets one, if not for the heart n lungs, for the brain.

Randy




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[*] posted on 3-14-2012 at 06:29 AM


Mom25, I think your son's problems are at least in part due to his PE. Most telling to me is lower lung congestion that won't clear up. It's really tough on us PE people when we get bronchitis or pneumonia because it's so hard to cough the stuff up. Frequent respiratory infections can be a PE symptom. With the other diagnosis he has (which I know nothing about) I'm sure the PE is a contributing factor. If he is reasonably healthy I would get it fixed before it gets worse, as it usually does during the adolescent growth spurt. PE is really hard on most people emotionally. I had mine fixed last year (mom, age 51) and my son had his fixed at the same time (age 16). I couldn't bear to see him go through the emotional pain I endured...I think PE correction is the best gift you could ever give your son!
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[*] posted on 3-14-2012 at 07:24 AM


Hi just wanted to chime in and echo Randy...I 100% agree that PE can wreck havoc on the brain mostly.
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[*] posted on 3-14-2012 at 08:20 PM


While there are certainly awful negative health effects of PE, I'd be hesitant to blame pneumonia on PE. I can't see how fluid would build up due to compression of the lungs. Then again I'm not a doctor.

Don't let that dissuade you. There are plenty of great reasons to get the nuss procedure even if it won't fix pneumonia.

PE can definitely set him up for heart and lung problems in the future. I could feel myself getting in worse and worse shape with no exercise tolerance at all.




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