I'm posting here because honestly I feel a little alone and don't know where to turn (my wife has been fantastic but can others really understand what I'm feeling?).
I got diagnosed with an AN a few days ago after months chronic (yes, I mean 100% of the time) feeling off-balance and a little sick. It's most pronounced when I go walking on the pavement or move too quickly (it's a lot better if I'm sitting still and reading a book or watching tv). It's not yet debilitating at all; I still go through my daily routine -including walks, treadmill, gym, but I feel slightly dizzy going about it.
Has anyone else felt the same?
I have been referred to an ENT for a hearing test; I don't notice any major hearing loss myself, but my wife says I speak loudly a lot and sometimes I don't hear well. My neurosurgeon told me to expect the heart to get worse with time.
As the tumor is currently only 8mm in diameter we've decided on a wait&wait approach. I'm a little worried as I went from feeling great 3 months ago to chronic dizziness and I'm scared this is only going to get worse! The surgeon said that eventually should I decide to treat I'd be a good candidate for GK but that any treatment for AN is unlikely to improve symptoms I was feeling before (he said that honestly it usually ends up worse). I'm just *really* scared of having permanent, disabling vertigo (that would be a terrible life sentence for me). My current situation is horrible but (probably) bearable and understanding that GK or surgery is unlikely to make my situation any better is depressing.
I'll almost certainly have to have something done at some point (I'm 35, basic arithmetic says that if it grows at the best cast of 1-2mm / year I'll need to treat) am just wondering if it's better to do it sooner than later and arrest the progression now when it is still relatively small or hope for the best that it magically doesn't grow again in the next 50 years (seems unlikely).
I feel surgery isn't a great option for me. I'm very scared of these things and outcomes don't seem to be better than GK?
I have a followup MRI in 6 months am just very worried that I'll be leaving it too long and then it'll have grown really big and things will be worse. I know that it's unlikely to grow that much in this time frame but I went from feeling perfect to terrible in 3 months, I cannot imagine what might happen in 6 months time!
Does anyone have any thoughts on the watch&wait approach?
Has anyone felt the same symptoms as I have and had GK treatment? Did it get much worse/any better?
Did anyone have treatment at my age many years ago and has had good outcomes?