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Hello! This is my first time posting in this community but I am hoping for some insight into severe medical pain.
I was diagnosed with Chiari in 2006 at the age of 15 but told that it wasn’t a problem. In 2014, I finally underwent decompression and a cranio-cervical fusion from o-c2 for the chiari as well as basilar invagination.
Following surgery, I had complications ranging from a paralyzed vocal cord to a misplaced pedicle screw but the worst was extreme leg pain. I had spasticity, hyperreflexia & clonus before the surgery but things worsened after and in April I was diagnosed with occult tethered cord.
My tethered cord release was in May and my leg pain has subsided. Unfortunately, my neck pain which has persisted since the fusion, has worsened dramatically. I saw an orthopedic doctor to find a plan for the pain and was immediately referred to see a spine surgeon — no local spine surgeons will see me. In the mean time, neurology put me on 30mg of flexeril daily with no help for the pain.
That being said, I had supine MRIs taken this week and after seeing them, the surgeon who did my fusion has ordered a CT scan and put in his first available tele-medicine appointment.
At my six month follow up, he noted that my odontoid only partially retracted and that I may need a future odontoidectomy. The orthopedic doctor was suggested about slight kyphosis in my upper spine and thought my fusion might need extended.
I’m fairly savvy with chiari and CCI/BI but I’m pretty clueless at the moment but I know that something isn’t right as I’m in similar pain to pre-fusion.
I’ve added a slice of my MRI and would love your insights!
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