Diagnosed with AN + Mystery Symptoms??+ Dilated eye

[amandajoy]

Hello 

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

[CA Marti]

Hi Amandajoy,

I'm sorry to hear of your diagnosis. I also was recently diagnosed last May of 2020. I'm new here but I have done a great deal of research in the past couple of months. I would definitely suggest getting at least three separate opinions and three or more video or in person consultations from top neurosurgeons. From what I've read the general opinions are for small to medium size tumors, you should wait for growth first before treatment. Either get another MRI in three months or six months. Of course, I don't know your specific case so I think you will get a much clearer picture of what your next step should be after consulting with more specialists. Hopefully some other members will respond and share their wisdom with you.
Hang in there and best of luck with everything.
Warm regards,
CA Marti

[Greece Lover]

I think Marti gives good advice here.  There are times when Surgery is the only option, but that is usually not the case.  And rarely is it an emergency.  Some doctors only do surgery and so that's what they'll recommend.  Definitely get more than one opinion.

I know my optometrist helped diagnose an AN because the patient had double vision, so if the tumor is pushing on the facial part of the 8th cranial nerve, it can cause eye problems. 

hang in there and get all the info you can!

[lryan42]

I'd echo the advice given earlier in this thread.

On the topic of specialists - definitely worth finding an ENT with specialty training and experience in neurotology.  Just my experience but of all the folks I spoke with about my VS the most out-of-sync with others was the (very well regarded but here just out-to-lunch) neurosurgeon.  All in all I talked to about a dozen doctors before settling on my plan.  That's probably excessive, but I wanted to really feel certain.

There are a bunch of AN specialty docs all over the country who do free / virtual consults.  If you haven't yet I'd encourage you to reach out to UCSD - they have a whole AN center with really good "upload your MRIs over the internet" type functionality.  The team at Yale has something similar.

Good luck!

[amandajoy]

Thank you so much for the support and advice. I have an appointment for a second opinion with a neurosurgeon on Thursday. I saw an ophthalmologist today who wasn’t sure why my pupil is dilated. He does think it’s neurological and has a “hunch” it is my AN. He gave me drops to shrink my pupil and it worked, but my vision is still very strange. But at least I can see my phone and text better now!

Thanks again!