~NF Awareness Month, day 4~
Yes, I know I missed day 3. So, sue me. Now, where was I? First tumor at 13, check. Totally ignorant about NF2, check. Okay. When I was a senior in high school I had my annual check up before school started and when my doctor asked "Anything else you want to tell me about?" I remembered to tell her oh, yeah, I don't think I can hear as well out of my left ear as my right. She checked to make sure nothing was blocking it (you know, like ear wax; it wasn't) then sent me to see that awesome child neurologist again. Another round of MRIs and a hastily scheduled visit later- scarily reminiscent of 5 years earlier- and we heard the words Neurofibromatosis Type 2 for the first time.
Neurofibromatosis 2 (NF 2) is distinguished by multiple brain and spinal tumors that can cause deafness, severe balance problems, facial nerve paralysis, spinal cord compression, swallowing difficulties or eye function complications.
Imagine learning that for the first time at age 17, when you're just starting your senior year of high school. It's supposed to be senior parties, college decisions, prom. Not surgery, almost 3 months of school missed (including a fancy dress up dance), complete and total change of my view of my future, new closer to home (and doctors) college picked out. I thought my life was over. This was back in 1993. We didnt even have a computer yet! Our information sources on NF2 were severely limited. Now, almost 20 years later- I'm still walking, talking, eating, seeing. Yes, I'm deaf (in both ears) now; I stumble around like a drunk at times; I have one eye that's permanently "asleep", but I'm still me. Still Tracey.