RE: anyone had surgery for retroflexed odontoid?

April 28, 2003

I am hoping that Kathleen will jump in on this one if she sees it to try

to explain things.

As far as I know, the C1 and C2 laminectomy doesn't correct the

retroflexed odontoid process. Our daughter had the C1 and C2 done at

age 3. Had a revision of her decompression done at 6 and then at 8 Dr.

Milhorat performed an odontoidectomy.

During her odontoidectomy, the top of C2 was removed (that is where the

odontoid process is located) and it was impinging on the front of the

brainstem --- whereas the common ACM is on the back. I know that

Kathleen has some wonderful sites about this and hopefully she will pass

them on.

With our daughters odontoidectomy, she had to have a spinal fusion of

C1-3 because of the previous laminectomies ---- had they not done the

fusion, she would have had instability for holding her head. The

odontoid process is what allows you to rotate your head like an axis.

We were informed by top Neurosurgeons (not just in the ACM field) that

when you select a doctor for this type of procedure (odotnoidectomy) you

want to be sure that they have done many and are very experienced

because there can be great complications to this type of surgery. Dr.

Milhorat was very hesitant to proceed with our daughter because of the

need of a spinal fusion and she had not completed her growth spurt yet.

There was concern should she grow a lot more after this surgery how

would the fusion hold up. From our understanding it would have been

better had she been older --- however, the situation didn't lean itself