Difficult appointmen

[Guest guest]

My daughter was diagnosed by an MRI to have Chiari. The diagnosis

makes sense based on her symptoms and the fact that my mom has it. I

also have symptoms and had an MRI and it came back negative. Our

neurologist referred us directly to a pediatric neurosurgeon which we

saw yesterday. He was nice enough to review my films as well.

The first thing he said was that my daughter's MRI does not show

Chiari. Her cerebellar tonsils hang down less than the National

Institute of Health's definition of Chiari. He said my tonsils

actually protrude further than hers, but still not far enough to be

classified as Chiari.

My question to him was could even a small protrusion be causing our

symptoms. He said he did not see anything on our films that would

indicate that would be causing any problems. He mentioned that when

there is a small herniation there would need to be webbing, blockage

or a syrinx (which he saw none of) to cause symptoms. He also said

the space around the herniation was wide. He's giving a talk on

Chiari to fellow neurosurgeons at Grand Rounds in Boston, so he seems

to be pretty knowledgeable about what he is talking about.

So has anyone else had this experience? My symtpoms are ear

pain/pressure, neck pain that goes up the back up my head and into my

shoulders on bad days and the biggest and worse symptoms is

esophageaol motility issues (food gets stuck in my esophagus with

every meal). My daughter's symptoms are more static. . .gross motor

delays, balance issues, incoordination, leg cramps, bowel issues. He

did say he wouldn't be opposed to getting an MRI of the spine for her

to rule out a tethered cord, but we need to go through our primary

physician for that. I told him I had heard of even 0 mm herniation

causing problems and he said, " Yes, but with a web or syrinx. " There

was another term he used as well, but I can't remember it.

Thanks for any advice.

Kelli