by angie7 » Tue Jul 17, 2007 9:03 pm
Oh sweetie, I am so sorry...That has to be the hardest thing in the world!! Know that all of you are in my thoughts...
I do want to say something about your oldest son that has all the symptoms and no herniation. He very well could have ACM 0. This is what I have. ACM 0 is mostly seen in children but sometimes in adults. My ACM was herniated to 0mm. Not enough for a regular doctor to mention it b/c unless it is classic 5mm+ herniation. So in other words, unless it is 5mm or more, they wont say anything. I was told that I didnt have ACM from a local doctor and was told that my sx were caused from something else and that I can come back when I couldnt walk, and then maybe they could do something. I went on to find Dr Oro (ACM/SM specialist) The first time I saw him he said "you do have Chiari and I want you to have a cine mri" Which I did and it showed minimal to no flow of csf to my brain. He planned an immediate decompression surgery the following month. Thank goodness I found him or I might not be typing this right now b/c your brain cant live on no csf flow.
I guess my long point is, even though your son isnt showing any herniation, he still could be herniated enough that a regular doctor isnt comfortable dx but herniated enough that it is causing major problems. I would send the films to a specialist and get their opinion. Most do it for free (or a small amount) and give you their opinion over the phone...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws