I am still trying to find out what is going on with my daughter. My question is could my daughter have all the symptoms of Chiari and it not be Chiari? She has had all the symptoms for 5 months but keep being it is just a headache. They don't know what my daughter was like prior to all of the problems. She was very popular at school, she was a good student, she enjoyed going school and now she is homebound and very rarely doing things with her friends. The doctors sometimes make me question is she really this sick. I asked her today "are you sure your head hurts today as bad as 2 months and she just statred crying. I know it does but I just feel defeated. MRI just don't back it up according to all the drs. and the neuroradiologist. We know she has a achranoid cyst but from what I have read the symptoms just don't match. Any ideas out there?
I am so sorry your daughter is going through this:( Has she had a brain, full spine, and CINE MRI yet? Has she seen a NS that is experienced with Chiari? The reason I ask all this is because I had a so called small herniation and many doctors told me it wasn’t causing my symptoms. I was finally able to see a specialist and he confirmed what I already knew…all those other doctors were wrong. My “small” herniation was blocking the flow of spinal fluid and had lead to the formation of a syrinx in my spine. I am scheduled for surgery on June 28th. My NS told me that without proper care, I would have probably ended up in a wheel chair. So…my point is, please push for her to be seen by a specialist. All my doctors made me feel like I was crazy too. They even refused to give me a referral to see a specialist. My primary doctor told me that my case was not surgical and it wasn’t that bad. I am so glad that I didn’t listen to him! Don’t let them make you feel like a crazy person…You are fighting for your daughter and there is nothing crazy about that. I hope this helps:)
Thanks for being understanding. What dr. did you see?
You’re very welcome! I’m seeing Dr. Ellenbogen at Harborview Medical Center in Seattle, WA. He also works at Seattle Children’s Hospital. He is an amazing doctor and a kind, compassionate human being:) I hope you find someone like him for your daughter!