Originally Posted by Jordanmom
Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and an upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last fall. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? They have not told me the degree of the curve. Is there something else I should be doing than just waiting? He cannot turn his neck left due to a kind of congenital fusion and curve at his neck. He also has a leg length difference of 2cm. We have had an MRI done and it revealed strange bone structures in the spine (wedging) but no hemivertebrae. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him.
Hello, my ex husband, my daughter and my 2 granddaughters all have nuromuscular dystrophy with scoliosis. When my daughter was 9 she had the steel rods placed and her spine fused, (1980's). Now they offer the temporary adjustable rods. These allow the child to continue to grow with less risk of the curve progressing. The first form of treatment offered them was the thoracic brace. This was not successful for my daughter or my oldest granddaughter who is now 9 and has the temp rods. She had the rods adjusted every six months until the doctor says she has grown as much as she is going to. At that point they place the permanent rods and fuse the spine. We are now scheduled for her final surgery. My youngest granddaughter who is 6 is now wearing the brace and has been very receptive to the treatment, which is key due to the brace must be worn for 14-16 hrs a day. If you need to know anything else please ask, I hope this has helped in some way. I would also like to mention they see an amazing doctor at the Iowa City Hospital in Iowa city Iowa. His name is Dr. Weinstien and is in the orthopedics dept. He did my daughters surgery 21 yrs ago and also my grandaughters surgery and is a teacher of his skills as well.