What do you do when the doctor doesn't believe you?

[beautyinbrokenness]

I've been diagnosed by my neurologist with Chiari malformation type 1, and have been trying to see a specialist neurosurgeon. They specified what information I needed to send in, and I did send it in but the secretary is now telling me that there is no real diagnosis included in my medical records even though my doctor states my diagnosis of Chiari. The MRI radiologist said it is normal, yet my neurologist diagnosed me. I don't know what to do because I don't want to have to start all over. My neurologist is closing his practice this month and I was hoping to get in to the specialist because all my symptoms are getting worse but it looks like this is an uphill battle :( anyone else have these troubles trying to see a specialist? What do I tell my doctor in order to get the proof I need?

[selmaS]

Hi and welcome to the Chiari forum.

There are many Drs that do not know that Chiari can and does affect us every day...they feel  it is "normal" to have some herniation of the cerebral tonsils....so it is very important to find a Dr well informed and experienced with Chiari and ALL related conditions.

Do you have a copy of your MRI? If not contact the facility that did your studies and request a written report form your NL that DX'd you.