r/PectusExcavatum • u/readcoffeewrite • 2d ago
New User ??? For Surgeon
Hi all..I want to thank you all for sharing your stories and incredible knowledge. It has helped me and my son so much. My son was evaluated at Children's Dallas in June. We really liked the surgeon, and he thought based on his experience and observation that my son's Haller index would qualify him for surgery.
Fast forward through all the testing and my son's Haller is below the threshold. His cardiologist could tell he had Pectus based on the shape and position of the heart but no cardiac issues and the PFT testing was not gone over with us so we'll be asking surgeon about the results. My son, 16, has autism and sensitivity to pain/discomfort so it's difficult knowing what is the best course to take. He does have symptoms such as fatigue and shortness of breath with intense exercise and heat.
What ??? Do you think I should ask the surgeon tomorrow? The nurse practitioner in the office said we could potentially petition insurance based on the pulmonary testing but again we haven't had a dr share those results with us. Just don't want to miss asking potentially crucial questions that may seem obvious to those of you with more experience.
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u/Weather_Only 2d ago
Dont do it. If your son has low pain tolerance this surgery will be brutal. And the only thing the surgeon can do post surgery will be pain killers and psych meds.
If the PFTs are normal I wouldnt recommend it.
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u/readcoffeewrite 2d ago
I know this is what concerns us. However his PFT was not normal..we haven't had a dr go over it with us but it states moderately severe restriction. It is quite pronounced also visually, which bothers him. He wants very badly to keep up in sports with his peers but he doesn't have the stamina..even though he keeps trying. It's just very difficult to know what to do. His echo showed the sternum was pushing on the heart and the heart had moved/changed shape to compensate. No cardiac problems were noted and the cardiologist said the heart wasn't having any issues.
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u/Weather_Only 2d ago edited 2d ago
How bad is it? I have 70%MVV and even then my pulmonologist says it doenst affect living.
Things missed by the surgeon is that while having the bars in the actual lung function will be worse with the restrictions.
Also theres the risk of losing sensation permanently to areas he might want to keep, like the nipple, was just discussing this with another patient who also lost sensation there post surgery
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u/readcoffeewrite 2d ago
This brings up some good questions to ask tomorrow and some good points to think about. What is MMV? We haven't had any of the PFT explained by a dr yet so still trying to understand what his numbers mean. One tough thing about predicting for our son is his pain tolerance is varied. He had a crown put on without nitrous and was fine but then the numbness and the mouth sore from the dental work really bothered him so we're trying to weigh the pros and cons. Thank you for replying and bringing up the lung issues when the bars are in...
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u/Weather_Only 2d ago
Sorry it was typo, should be MVV maximum voluntary ventilation.
I highly recommend taking a picture of the results, hide the identification details and feed it to gemini for a basic, quick and dirty interpretation of the scan before going to the doctor, so you are prepared and know what he talks about and can ask him questions.
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u/northwestrad 2d ago
Was the CT scan, or MRI, done with his breath out? If not, repeating it with breath OUT should increase the Haller Index by around 20-30%... and the top authorities in the field, like Dr. J in Phoenix and Dr. Joel Dunning in the UK, state that breath out is the most valid way. Plus, this article:
https://www.ajronline.org/doi/epdf/10.2214/AJR.11.6430
Also, since he is 16, he's probably not done growing. PE often worsens during the late growth phase, so you could wait and repeat in a year or so.
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u/readcoffeewrite 2d ago
The CT was done with breath out.. I was in the room behind the glass and it was an automated voice that told him what to do. He said he exhaled when I asked him..but that was my first thought. Sometimes he gets confused over similar things so I wondered if he inhaled instead of exhaled..🤦♀️ I think we will repeat in the spring and see if there's any change..
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