Hi--My 17 y.o. daughter has been having problems breathing since September. She is a swimmer and is used to swimming 3000 meters a day. Now she can't make it a lap because of breathing, pains in her rib cage and sternum, and numbness. We have seen a cardiologist, pulmonologist, neurologist, and no one has answers besides weakening of the muscles around her lungs. She also saw a thoracic surgeon at Vanderbilt on my suggestion for her PEX. He barely did an exam and said PEX didn't seem to be causing this issue. Everything he said seemed to contradict articles I've found. The local hospital (through CT scan) rated her PEX at a 2.9 on the Haller index, but from what I've read I'm quite sure it wasn't done correctly. She's had doctors tell her it's just anxiety and stress. Her hands and feet are turning blue and getting cold. From some articles I've read, it seems like PEX could be putting pressure on her heart possibly helping to cause the circulation issue.
This mom needs help and support and any articles that can support findings would be great. We are tired of watching our daughhter struggle as this is taking it's toll on her mentally and physically at this point.
No and I think that's the problem. We are getting a second opinion this week. Just gathering all the information I can before that appointment of how things need to be measured and calculated. Any knowledge you can pass on would be great. TIA
melaniej wrote: No and I think that's the problem. We are getting a second opinion this week. Just gathering all the information I can before that appointment of how things need to be measured and calculated. Any knowledge you can pass on would be great. TIA
Sadly I'm from a country where doctors are always dismissive about severe cases of symptomatic PE, so I can sympathize: 4.2 Haller Index with a slightly depressed sternal manubrium and symptoms that severly worsened through years. No doctor has ever advised me to undergo surgery and they always sent me to undergo tens of different test to discover what strange and impossible illness I should have that relates to my symptoms that worsened and worsened until I discovered I have the FULL clinic presentation of a typical symptomatic pectus excavatum wich may sometimes/tipically (it's not clear in research papers) worsen his symptoms after late adolescence and after 30 yo.
I believe you should avoid thinking too much about the pectus and about DEMONSTRATING it is related to symptoms, because at the actual state of medical science it seems doctors and researchers haven't found a way to measure actual impairments that occurs in the pectus excavatum population: so it's kinda normal that even extremely severe cases (like Haller Idex in the teens or tweens numbers!) show a co-existance of severe symptoms and at the same time they show tests with not completely patological cardiac and pulmonary findings.
Those persons doesn't always show pathological findings in their eco, ecg, spyrometry etc, but they do have symptoms and they resolve those symptoms by surgical means...
So at present state the research is focusing on finding new and specific ways to "measure" the impact PE has cardiopulmonary functions pre and post operatory and at the present moment probably you may have symptoms and doctors may tell you that's all in your mind.
If you are in the United States I think you could try to contact Mayo clinic and Doctor Dawn Jaroszewski because they seem to be both prepared and humanly caring about the impact of Pectus Excavatum on health.
Just to clarify: the greatest experts on the matter in my country told me "symptoms only VERY RARELY show and only in those persons with a Haller Index well above two times yours and with a severly compromised sternal manubrium".
What they said is actually completely false, as stated in many scientifical papers and in thousands of findings, but is what was written in their college books back then...