Hello – my daughter was 7 years old when she was diagnosed with severe juvenile idiopathic scoliosis. She was braced and did fairly well until she hit puberty and breast development caused bracing to be unbearable. She was fairly non-compliant with bracing at that point and by 12 her curve(s) had progressed to 75 degrees both upper and lower and surgery was scheduled.
In Nov of 2007 she underwent spine surgery by a very well respected orthopedic spine surgeon. They never mentioned the term “Harrington rods”; but she has 2 rods and 24 screws. She has two remaining vertebrae above her tailbone that are not fused. She did very well after surgery, however by about 8 weeks post op she began to have a significant sway in her R hip – the space between her rib cage and her hip actually. There was no post op bracing. The other area that has been a constant struggle is that one of the screws on the lower left side of her spine didn’t anchor in and is just raised enough that we can actually grab the top of it(gently). It is right at the spot where the seat back hits in a school desk – so it causes her grief daily if she isn’t very careful.
She is 15 years old now and still has (and worsening) severe R hip and low back pain. She is 5’ 6.5 inches and weighs about 140lbs. She has always been active, she played basketball in 8th grade the year following surgery and played JV tennis last year – (she felt high school basketball would probably be too aggressive for her to be successful). This year the pain is so severe that she chose to quit tennis after the first 2 weeks because she was in so much pain.
She is an honors student and on ASB student council in her sophomore year. I hate to see her in so much pain.
Last night was Jr/Sr Prom and she was on the planning committee and was able to attend to help with setup and tear down. I went to help at 11pm when the dance ended and it broke my heart to watch her. She was standing very crooked and kept grabbing her hip while she was taking decorations down. She works so hard every day to overcome the pain and complains very little.
I guess I write all this to see if anyone else out there has had any similar issues and if there is anything you’ve found to help.
Any feedback would be appreciated.
I am also interested in obtaining a second opinion and if you know of any excellent, highly respected neuro or ortho scoliosis specialized surgeons please email me privately. My email is firstname.lastname@example.org