Hello
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I'm Amanda Joy, and I'm new here and new to AN's. My dilated pupil is what ultimately lead me to my AN diagnosis. I have been experiencing left dilated pupil, nausea, fatigue, dizziness, headaches (mostly left side), left ear ringing/muffled hearing, numb/tingling sensations in my left sinus and teeth, "off" sense of taste and smell. It all started slowly and is now more consistent. My pupil has remained dilated for 3 weeks now.
My Optometrist thought it could be a migraine and when I called Urgent Care for a consult about my "migraine" that wouldn't go away, they sent me to the ER and a CT scan showed a small lesion. I got an MRI that confirmed a schwannoma on the left side and a consult with a neurosurgeon confirmed it's an AN. He said it's 1.7cm x1.3cm on the left and kind of an L shape.
In my consult with the neurosurgeon, he said some things that totally confused me. First, he said he doesn't think any of my other symptoms besides the ear ringing and hearing loss are related to the AN. He said he thinks me eye and other symptoms are from something else. He said my tumor is too small to cause those other symptoms and that totally confused me! I heard neurosurgeon from UCLA on youtube say "sometimes small tumors can cause big problems."
I know a dilated pupil isn't a common symptom, but I have read a few stories here about others with one sided pupil issues that seemed to be related to their AN. Also, the oculomotor nerve and the eye are connected to AN. It just seems like too much of a coincidence for him to say my symptoms aren't related to my AN. I dunno, maybe it's just the thought of having an AN AND some other mysterious health issue is kinda too much to handle, so maybe that's why I'm trying so hard to connect them?
The surgeon also told me that I will need surgery, and it's better to do it soon to have a chance at preserving my hearing. He said he's sure it will grow and cause problems, but he never tracked any growth. I thought that was weird since they usually see if they are growing before deciding on surgery? I'm thinking about going for a second opinion. Mostly to see if my other symptoms could be connected to my AN.
I have appointments coming up with a headache specialist, ENT for audio-gram, ophthalmologist etc. so hopefully, I will get some answers!
I would so genuinely appreciate any insights/advice/camaraderie!
Thanks,
Amanda Joy