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11/21/2016 Latest post:
James went in for a simple, routine baclofen pump replacement surgery on January 12th. We expected to be inpatient for 3 to 5 days. Unfortunately, due to a number of post op complications, he was hospitalized for 10 months due to dystonic crisis (picture a head to toe charlie horse). Despite multiple medicinal trials, we've not been able to get his spasms under control. As result, DBS (Deep Brain Stimulation) became a necessary intervention.
Unfortunately, we were unable to identify a neurosurgeon in Boston who would take James' case. However, we were able to locate one at Gillette Children's Specialty Hospital in St. Paul, MN who would! After 4 months of fighting with insurance to get the procedure approved, an independent review organization overturned their denial on October 28th. Three weeks later, on November 21st, we arrived in St. Paul by medical transport.