My 9 yo son had decompression and skull-to-C2 fusion on Feb 13. Recovery has gone pretty well, but his neck range of motion is very limited. We had our follow up yesterday and saw both surgeons. The one who did decompression was very minimizing when he said oh range of motion will come. Then we met with the surgeon who did the fusion and after my son left the room I mentioned that he can only turn his head about an inch in one direction and half an in the other. He said that was probably as good as it would get.
Is this for real? You could have punched me in the face I was so shocked. He said the up and down might improve ( it’s about the same 1 inch or less in up or down position). I’m looking for a sanity check for fusions. Physical therapy eval was this week and they recommend 6 months for 3 days a week. And they sent us home with neck exercises. Surely there’s more hope than the fusion dr portrayed.
Please share experiences with this fusion and what motion was regained over time.
You have a pretty darn brave so having come this far (parents too) don't let ANYONE limit what he can do or what will happen after some PT. Its going to take a while for the boy to adapt to the new "structure" The consensus of the discussion above seems to me to be you will notice more than he. As only 50% of the range of motion comes from that joint, it should get better.
Hello Mary Jo, my name is Josie I am 62 I have chiari malformation 1 had one surgery to decompress and about 4 years ago I was fused from the occiptal to C3 and decompressed again, My range of motion is limited to about 40%. This was after physical therapy. Its not so bad up and down but yes the side to side can be very troublesome. Its horrible that your son is going through this, my prayers are with you Mary Jo and your son.