Thanks for all the encouraging messages. it just helps to share. I have my appointment with the surgeon on Monday so will know more then. I am dealing with those headaches along with constant ringing in my ear and some dizziness. I am using drops in the ear every night right now till my appointment. I am nervous about
surgery and especially dealing with the head. The doctor will make an incision all the way around the back of my ear and have access to the tumor that way. The operation will last any where from 3 to 7 hours depending on the size of the tumor. It is close to the facial nerve so they have to be careful to not cause facial paralizes. They remove all the hearing bones if they are destroyed by the tumor. They wont know how close to the brain the tumor is until the surgery takes place.The ct scan doesnt show the full extent of the tumor and damage it has caused. It just gives them some idea of what they are looking at as far as surgical procedures. I am just hoping for a good outcome.I was so shocked to hear this when I went to the ent for what I thought was just a persistent ear infection.I have never heard of a cholesteatoma before. My rheumy was the first one who acted concerned about
it. When I went to my last appointment with him I told him I had an ear infection and could he check my ear. He looked and said that doesnt look good you should go to an ent.
I just recently started cellcept and was going to be trying to taper off the steroids but now the rheumatologist said I cant because of the upcoming surgery and will need to stop the cellcept at least 2 weeks before surgery. So anyway that is where things stand for now and I will write more after my doctors a[ppointment.