Hi, new friends. My name is Michele. My 11yo daughter was diagnosed recently with Chiari I malformation with syrinx after being seen for mild scoliosis.
We went from her pediatrician sending her to an orthopedist, to the orthopedist recommending an MRI, to a diagnosis of Chiari, to waiting for a neurosurgeon appointment over the course of the last month. She doesn't have any symptoms other than the mild scoliosis, so this has come as quite a surprise.
After waiting two weeks to the neurosurgeon, we showed up in her office only to be told that she had another urgent case and had to reschedule us and we need to wait another three weeks to find out if surgery is recommended. Very nerve-wracking. I totally understand her need to clear her schedule for her urgent case, but I would have hoped they could try to work us in sooner than making us wait another three weeks.
Anyway, these are new waters for us and I'm pretty nervous about it all, so I'm glad to have found this supportive community. <3
-- Michele