My story

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My story in a nutshell. I was born with a cleft pallet. I had multiple surgeries to repair my palitine bone as a toddler. I then started to experience frequent ear infections. throughout my life, I have had many PE tubes placed in both ears. When I was 14 years old or so I went to an ENT apt like usual. In this apt with my DR whom I ha all my life, started to pull a "scab" off my ear drum while I was awake. After screaming and passing out my mother pulled me out of the room. Shortly after we saw a new DR and he requested Ct scans of all new pts. The day after we recieved a call to come in the next morning. I was told that my mastoid bone, middle ear, and parts of my skull had been taken over by a tumor. He asked my mother to look for a surgeon as soon as possible. She called my foriegn exchange brother from Brazil. His parents were both ENT's and might now who to reffer us to. They reffered me to DR. Paparella. We had an appointment within a couple days. Shortly after I went into surgery unaware of what was wrong with me. I woke up and found out that I was almost 48 hours away from death. I had an infected cholesteatoma that was a couple millimeters away through breaking the membrane into the brain. I had to have another surgery in a week for the skin graft and hearing bone placement plus a new ear drum. Since then I have had new cholesteatomas every two years. It damages my inner ear and bones everytime. Just recentally the "C-tumors" were visible in my ear. My boyfriend could see them covering the inside of my canal. I also struggle with TMJ and lost alot of my hearing in my left ear. My doctor is amazing and his associates are wonderful. I struggle with constant earaches, sinus infections, migraines, and pain. I have lost jobs, friends, and delayed my RN degree multiple times. I have been tehnically going to college 8 years trying to get my nursing degree. I keep getting these tumors and pain which takes me out of life for months at a time. I just want to hear other stories and learn more about my condition. Its never fun having no one to understand and no way to fix it.