Hi Katie, So sorry you are going thru all this! My husband had a psuedomenengicele (probably did not spell that right but is a spinal leak) His was caused from a myelogram.

He went for about 8 mos after the myelogram with an out of this world headache. His orthopedic dr had no idea what was wrong with him. His headaches were so bad he would just spin against the wall crying in pain. He had most of the symptoms you have described except for the draining in the ear. He didn't find out what it was until his dr sent him to New Orleans to see a Dr Whitecloud. He took an x-ray and immediately recognized the symptoms and sent us back to our dr suggesting they do an MRI (but a certain kind of MRI with a certain kind of imaging or something to that nature--This was about 25 yrs ago) His Dr ordered the MRI and confirmed what the other dr saw on the x-ray. His dr said he was sure glad they found out because he was beginning to think my husband was a hypochondriac and was imagining the pain!! He did apologize though.

Anyway they had to go back in and fix that. I sure hope that is not the problem with you but I would ask about it or maybe even get a second opinion. Were any of your MRI's with contrast? Maybe they wouldn't pick it up unless they were maybe specifically looking for it. I don't know. Hoping they will find out soon for your sake. I know what my husband went thru. It was terrible. Good luck and God bless you with relief.