Hello all, I'm new here but have been reading the threads on here for about a month now. My 12 year old son has had chiari malformation and scoliosis since he was a cute little toddler. We noticed the not so straight spine then through doctor visits found the chiari. He's had decompression surgery and stint inserted back when he was 3 & 4 yrs old. He is growing like a weed and we were told he'd need the surgery for rods & pins now. Apparently he has large growth plates in his spine which tell the docs he will be tall and will not stop growing until he is at least 18 years old. His scoliosis is not anywhere from 53-59 degrees (three orthos read the same x-ray differently 53, 54 & 59), and the newly formed lower curve is at 33. He has started having difficulty breathing, he says it's normal but it's not. They even stopped him while he was doing his MRI Sunday and asked if he was okay, he told them yes so they asked why he was breathing so heavily and he said that's just the way he breathes. It's progressively gotten worse, I don't understand how he doesn't see it. He's also started complaining of headaches and some back pain. Back pain was bad enough one day that he sat himself out of a baseball game. He has a high tolerance for pain so now that he's asking for aspirin it really is concerning me. He says he has numbness in his right arm, not completely numb but numb enough that he tells people to hit him as hard as they can in that arm because he doesn't feel it too much-BOYS!!!!
I'm at peace with the need for surgery, my hubby is really struggling with it, and my son thinks he is a macho man and can handle anything. I really hope he keeps up the positive attitude. His ortho took him out of football but said baseball was fine. 2nd opinion said let him play football until he has surgery, but by that time season was over so he missed it anyway. He was HEART BROKEN when football was taken away. He is also not too happy that he will miss the spring season of baseball.
Whoever thought of putting this forum together is AMAZING! I have read through so much of the threads and have formed my questions for my ortho from here. I couldn't put into words what I wanted to know before, and through reading through the information posted I've got my list of questions. And it's a short list so that I don't drive the ortho crazy!