I was diagnosed with a 5mm acoustic neuroma in November of 2011. At this time, I was 18. I first scheduled my middle fossa surgery through Dr. Day at UAMS, but he later had to reschedule due to himself having to get surgery on his spine. This sent a red flag to me because I was already choosing between UAMS versus the House Clinic. I initially chose UAMS out of convenience but then ended up having my middle fossa surgery at the House Clinic (thankfully!) in March of 2012 and I am almost at the one year mark. This obviously got me looking back into subject which is when I stumbled across NF2.
From what I have read, NF2 is much more common when the patient is younger and already been diagnosed with an AN? No one in my family history has this, but my mother has Trigeminal Neuralgia, and my father has had multiple surgeries for cholesteatomas. To me, I feel this has to be interrelated in some way? Should I try to get the genetic test for this reason?
Either way, shouldn’t my doctors have told me that due to my age, this was some sort of risk? I mean, this was not even mentioned. I felt like I was done with that chapter of my life, and then just reading a few articles online made me feel how I felt when I was initially diagnosed. I have my first follow up MRI at the beginning of April. Obviously, I am probably worrying myself about something that is not there, but is there anyone else who was diagnosed with their first AN at a young age, and then later diagnosed with more?
Thanks and xo.