Hello all

General
1

Thank you for the greetings that I have received. My son was recently diagnosed, and is just starting his battle with his HMO to find decent medical care. He is in his mid twenties, and after his first few frustrating doctor visits to find the source of his chronic aches & pains, finally got an MRI which indicated chiari malformation. His first visit to a neurosurgeon was pretty negative, with the doctor basically blowing him off, telling him he had a "bad neck" and to do exercises. He is currently attempting to get a second opinion through his HMO.

I have joined this group to learn about this condition, in the hopes that I can support him. Unfortunately, he is living in Los Angeles and I am in Boston, so I'm trying to provide "long distance" support. We've been discussing the option of coming back home to Boston if he can't find the help he needs out there.

Best Regards,

Dan

2

Dan, finding the right doctor to help can be one of the hardest things we do. He was right to see a neurosurgeon (skip the neurologists), but what he really needs is a Chiari specialized NS. You’d think that a brain surgeon was specialized enough- but no. There is a member recommended doctors list on this forum if you need it.

http://www.chiarisupport.org/forum/attachment/download?id=5129359%3AUploadedFile%3A221343

Also, There are other afflictions that are common with chiari to be aware of. Elhers Danlos Syndrome /hypermobility syndrome and dysautonomia. I wish your son the best and hope he gets help soon.