A long time ago I began to have tinnitus, it was not frequent and I heard lots of people had it, so I blew it off, years later it was persistent, but I saw commercials that said it was common and I could try their ear drops. Well other issues in my life caused me to not trust any medicine made out of unnatural materials, so I decided to deal with it. My mother also had ringing in her ears...maybe it was a family thing I thought. My mother was later given an MRI and her MRI showed an AN on the left side. I learned a lot about AN's at that time and the treatment of them. I decided the ringing in my ears MAY indeed be worth having checked out but I was nursing my 3rd child. Mid 2013 while pregnant with my 4th child I was diagnosed with Melanoma. The fear of an AN quickly changed to fear of more Melanoma which had spread and was no affecting my brain. Five months after my 4th child's birth I could no longer stand the pains that had been coming and going more frequently behind my right ear. I had my hearing tested and they told me I had nerve damage, so me thinking it could have been due to the drag strip where I sat too close to the top fuel cars or the bass I used to listen to in my early 20's, was incorrect. I was referred to the ENT who was also the surgeon. He met me and I was smiling and he gave me a look like "Why are you smiling, this is serious." He talked and found out my mother was his patient and she had an AN. He referred me for an MRI and assured me that the chances of her AND I both having an AN were like 1 in a million. After finding out the possible side effects of the contrast dye I denied the dye and then I was denied the test. I was angry so I called my GP and she met with me a week later and said peace of mind may be worth the few days not bfing my child. I called the lactation consultants and learned the dye would not get passed on in the milk, so I rescheduled the test for 4/10 and on 4/15/2014 I had enough of waiting so I called the Dr. office and the Dr. called back and told me the news... I had him repeat it, then he scheduled me to meet with him in his office. My mother went with me and we were both referred to a geneticist. What is odd about us is we are not the typical NF2, my mother's on the left and mine is on the right. Also odd is that her's and mine are about the same size, mine is 2.0 x 2.4 x 1.7 cm.
From the get go I was happy and joking still, but after the last appointment and thinking about how it is pressing on my brain stem and how my children are 13,9,3 and 6months. I got worried...not for me but for them.not caring for them during recovery, would be soooooo hard on me and them. I am there 24/7 care giver and NO ONE knows them like I do. I know I just made myself seem indispensable, and I know children are resilient ...so maybe I need them more than they need me, but they are such a huge part of who I am, and I do, do so much for my family I can't see laundry and dishes, proper meals etc getting done without me at full capacity...so I chose watch and wait, and since then just a couple weeks...I have had more headaches and more dizziness. Six months seems so far away. I have gone back to a strict diet like I once was on and I try to stay happy and I pray often.
