My daughter has a both scoliosis and pectus excavatum. Pectus Excavatum is a malformation of the sternum and ribcage, causing them to sink inward. All the research I have done says that of the 1/2000 girls to get PE, 35% percent of those have scoliosis as well. CT scan showed that Nikki's was pretty severe, but we were lucky and it was only putting pressure on her heart - not crushing it and her lungs were very restricted but not irreparably compromised. She had surgery to correct this in July. The Nuss procedure; they inserted a metal bar into her chest pushing out the ribs and sternum to the position they should be in and will remain there for two years. It was very painful for her and she lost the whole summer healing all the microtears and fractures to her ribs.
In May/June her scoliosis was measured at 33 degrees and was almost completely thoracic. Our ortho discouraged the use of a brace saying they don't seem to really work. Nikki didn't want a brace so she was relieved. But the first time I looked at her back after the surgery I could tell things had drastically changed. I called the ortho and we went to see him in Sept. He was a little annoyed at my calling him so urgently to get her seen but after looking at her x-ray his attention turned to her, as she was measured at 45 degrees. There are now slight counter curves both cervical and lumbar (I don't know the degree).
Now all of the sudden he wants to put her in a brace in hopes of holding off surgery. I asked him about the connection with the PE and scoliosis and although he admitted that he had never seen a patient after having that surgery, he was sure there were no connections.
I saw the change the day after her surgery and I really think there are some circumstances beyond basic idiopathic scoliosis.
So my questions are: Has anyone else had this kind of experience? Are there any specialists who deal with this type of situation? Will a brace help her now? Does surgery need to be done before the bar comes out so her chest correction doesn't go back? I am so frustrated. Can anyone help?
I am hopeful-