I am going through some papers that need to be filed and came across Reilly’s last orthopedic visit report. I keep telling myself just think of all the new words I am learning that I otherwise wouldn’t have been exposed to. I don’t think they are helping my scrabble game though.
Reilly is an 8 year old young woman with a diagnosis of Rett Syndrome. Her seizures are well controlled by medical treatment (not exactly). We are following her up because of her scoliosis. Since her last follow-up here two years ago she’s been doing quite well (not really). She is walking only with help (hmm, that isn’t true either). She can walk a few steps (with someone supporting her) and the rest of the time of the day she is ambulating with a wheelchair.
On physical examination today, she had a long right curve with ATR measured at 14 degrees. X-rays were done today and demonstrate a right long C-shaped curve with a Cobb angle of 33 degrees and some kyphosis on the thoracic area (my readings tell me >40 typically require surgery). We have discussed with Reilly’s father the natural history of her curve and that it will deteriorate in time, especially when she goes through her growth spurt. At that point there is nothing that we can do to stop the progression of the curve. She needs to be monitored yearly and when she gets into her growth spurt, every six months.
Treatment with a brace is not effective in patients like Reilly and will cause more harm than benefit. We have explained that to her father and probably at the age of 11 to 13 she will need to get her back fused in surgery. The level of the fusion will depend on her pelvic obliquity and ambulatory ability. If she does not ambulate or there is a component of pelvic obliquity, we will probably fuse her to the pelvis; otherwise, we might end at L5.