At least it's not a tumor.....

All along I kept telling myself, at least it's not a tumor. The new ENT called me into his office and asked me to have a seat with him in front of his computer. There it was, my CT scan on the screen. Why did it look funny? Why was one side a lot more white in color compared to the other? He had a grim look on his face and as he pointed to the large white areas. See this, it's your bones. See how this is a lot larger than the other side? This is a rare bone disease called Fibrous Dysplasia. I was in shock, but I thought, at least it's not a tumor. He referred me to a Neurosurgeon who could help me. All I could think about was having my head cut into. I cried. My mom cried. I was thinking how relieved I am that my dad died 5 years ago at that time, because he would be pacing the floor and freaking out. He wouldn't have been able to deal with this disease in a calm manner. Mom and I go home and look up Fibrous Dysplasia. In a nutshell, there is no known cause and no known cure other than removal of the mass. Wow. I scrolled through picture after picture of people that looked like the Elephant Man, or worse. I even ran across one of a little girl from another country that obviously had no health care, because she looked like a hippo. I kid you not, her nose was as large as and favored a hippo. I was devastated. I had to wait another month to see the Neurosurgeon, only to have him come into the room, confirm the fact that I had Fibrous Dysplasia, and then tell me that it's way too involved for him to do surgery. He referred me to another Neurosurgeon. At least it's not a tumor, I thought. This new guy is the Director of Skull Base Research/Neurosurgeon here at LSU Shreveport. On 10/14/10, I anxiously waited with my mom for 3 hours, wondering if I was going to have any resolution this time. We pondered what he might say. Finally, he comes in, does a thorough visual and neurological exam. He talks to me about my symptoms, excessive watering of my right eye, vision loss, dark spots, flashes of light that look like lightning bugs flying past, but nothing is really there. I tell him about my ear and the constant popping sounds along with static when I talk or when someone talks to me. I tell him about the PAIN. I can only describe it as a sharp, stabbing pain in my brain that is nothing like a migraine, but 100 times worse. He leaves the room, comes back 10 minutes later and asks, how is the 26th? Mom and I look at each other. I say, for what? He says, for surgery. You need surgery now or you are going to go blind and deaf because this mass is pressing against your optic nerve and ear canal. Um, ok. Surgery is the 26th. We can do that. Now what? It could be worse.....at least it's not a tumor.