Another really bad day. She literally slept 2 hours last night. So she slept most of the day and just couldn’t be out in the living room in the light and noise at all. Her headache gets worse day by day, as does the nausea. She barely eats and is just in so much pain.
Was able to chat with Gretchen tonight – she and her daughter have Chiari. It was great to be able to talk to someone and not have to explain what POTS means. She was able to give me some guidance regarding the MRI – she suggested they may need to do a spinal MRI to really be able to see the tonsils. Or, it is entirely possible that the radiologist missed a Chiari malformation and it is right in front of his nose. So, we are still in a wait and see mode until we get to Dr. Tinkle but at least we have a bit more to go on! It was really nice to talk to someone who understands so much of what we are going through.