I don't mind you asking at all! He has congenital cervical scoliosis, about 35 degree curvature....including multiple fusions and deformities from C2 to T1 or 2. He also has fused ribs, which have not been an issue at all (so far). He also has a Chiari I malformation that has not been a problem, more of an incidental finding on an MRI. I have only talked with one other parent that the child had a similar scoliosis, it apparently is very rare. We doctor at Mayo in Rochester. He has been very fortunate that he has not had to have any surgeries, but many doctor appts, MRI and such.
Our biggest God send has been a NUCCA chiropractor that has kept him "in line". We went for a Mayo appt found out his curve was up to 42 degrees, and were told that he would very likely have to have spinal fusion the next summer to fuse the few little pitiful joints in his neck to keep if from curving out of control.....it is a loooong story but we found out about an Upper Cervical chiroprator that only adjusts the C1 joint (his only normal one in his neck) We took him to the chiropractor for about 9 months, then back for our recheck at Mayo. We knew his neck looked better, back to his "normal". We really felt we would have good news, the doctor at Mayo came in and said, "I am not sure what has happended since your last visit, but I have never seen a congenital curve improve" He was back to his "normal" 35 degree curve. We told him about the chiropractor, no response was made positive or negative from the doctor. He said he would not have to see him for 2 years! It was a gift from heaven! He is due for that check now next week, and I feel his neck still looks the same. We are hopeful for good news again.
