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Torticollis --> thoracic scoliosis --> Chiari I Malformation

My son CO is an active 34 months old full of life and energy. When he was 2 months old, my husband noticed a hard lump on CO's left SCM area. His pediatrician ordered ultrasound and determined that CO has muscular torticollis and prescribed PT. After about a year of PT we've noticed his right shoulder elevated (left shoulder drop). According to a pediatric orthopadic surgeon, CO has a minor (15-18 degrees of culvature) thoracic scoliosis, but he wasn't sure which came first, torticollis or scoliosis. MRI was orderd by the same pediatric orthopedic surgeon to further detemine the cause of torticollis and/or scoliosis.  The MRI was reviewed by a nerosurgeon; CO was diagnosed with Chiari I malformation. The neurosurgeon reported that he didn't see an association with Chiari I & Torticollis & scoliosis. We were told to "wait & see" for 6 months by the orthopedic surgeon. We took CO back to the orthopaedic surgeon (CO is about 24 months old) & xrays were taken (CO wasn't very participating). CO's curvature was measured at 9-13 degrees which is less than the last mesaurement (15-18 degrees). We were told to "wait & see" again eventhough CO's torticollis hasn't gotten better (but didn't get worse either). We also took CO to a pediatric opthalmologist and and was told that CO's eyes have abnormalities. Our 9 months check up is coming end of the month. My husband and I are very concerned wiht CO's limited ROM & Tilt (ROM: 45 degrees, Tilt: 20 degrees, swiming right hand when running as if he is trying to keep the balance). We've heard about botox treatment for muscular torticollis. Psyiatrist (Rehab doc) palpated the affected area (left SCM) and told us that the area feels very hard & fibrotic. Due fibrosis and CO's age (34 months now) botox probably will not work for him. The rehab doc reviewed CO's medical records and recommended another set of MRI because she is worried about chiari I (& scoliosis & torticolis). His last and only MRI was taken just over a year ago and she wanting to repeat it. here are my questions.

1. Which is first: Chiari I, torticollis, scoliosis (we found out torticollis first then scoliosis then chiari I)
2. What more testing needs to be done? more MRI?
3. Does it matter whether MRI is reviewed by neurosurgeon or neurologist? The rehab doctors wants new set of MRI to be reviewed by neurologist not neurosurgeon.
4. What is the ideal treatment plan?
5. If muscular torticollis (ROM 45 degrees, Tilt 20 degrees, swings his right hand when running) is only problem (causing scoliosis for compensatory purposes -- maintaing horizontal vision by elevating right shoulder which then cause or temporary or permanent spinal curve), what is the treatment for it (PT failed, no botox)?

Please help!

Extremly worried mom
1 Responses
Avatar universal
my grandson was born with torticollis and went through pt, which helped a little. He slept for about 5 years with his eyes partially open. The thoracic curvature is obvious. He will be eight in September. One night he was sleeping at my house, awoke very agitated, argumentative and frustrated, eyes wide open. He appeared to be like sleep walking, but never left the bed. He awakens during the night and gets on hands and knees rolling about like he is awake but appears to be lost. Are these signs of Chiari?
Thank you,
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