I registered for this forum awhile ago but never posted until now, pleased to meet you all. I had a very large unilateral acoustic neuroma removed when I was seventeen and a meningioma diagnosed when I was eighteen (I'm nineteen now). The meningioma was found through an MRI ordered by my neurologist after I was diagnosed with epilepsy. Since that diagnosis, I have wondered a few times if I have NF. To my knowledge (although admittedly I've never asked and my family is pretty big), I don't have any relatives with it.
Yesterday I saw my neurosurgeon for my annual appointment and asked him if he thought I could have NF, and if genetic testing was available. He said that when looking through my notes he was surprised that no one had recommended I get tested earlier, and personally, yes, he did think I could have NF2. Both of us are extremely interested in pursuing the testing, so we're organising that.
Questions: I searched around for other discussions of NF testing in people who have only had unilateral ANs and see that these scenarios have come up before. I meet one case of the presumptive criteria I've seen listed around these forums and on various sites: unilateral AN at age <30 + meningioma. I know I don't actually meet the diagnostic criteria though currently. If the mutation is found, I still wouldn't be diagnosed with NF2 and would just remain presumptive, right? Also, will I need to undergo genetic counselling as part of this testing?
I know we might look at potentially having genetic studies done on my first-degree relatives if the mutation is found, but I don't know what else might happen right now. To be honest, my biggest worry is about my younger brother's future, so part of the reason I wanted testing was to give him the opportunity to look into some of his own potential risk factors, should I test positive. We'll see what happens, I guess -- thank you for reading! On the bright side, the appointment did otherwise go as well as could be expected.