Hi there. I am in a watch-and-wait phase for my AN, which is 15 mm. It is located in my inner ear canal and butted right up between the front and back lobes of my brain—left side. It was discovered in March 2025 because my face felt weird and numb. I had been a patient of another neurosurgeon in Toledo, OH, who honestly didn't 'know what to do with it and referred me to a neurologist. That didn't sit well with me, so I immediately researched to find the right neurosurgeon and ENT team to treat me. My initial visits and consultations with Drs. Ren and Wu at OSU Wexner in Columbus, OH, were fantastic. I had vestibular testing that came back within the normal range, which doesn't make sense to me because I am very symptomatic of this AN. My follow-up "growth/no growth MRI" is in November with a contrast MRI. Dr. Wu wants to see the growth pattern.

I have become more symptomatic over the last month or so, and it has gotten worse in the last week. When I lie down now, I cannot rest on my left side, as it causes the buzzing or tinnitus to go into overdrive. I've also woken with a dull, deep headache on my left side. I've had these issues, but nothing as intense as it is right now. I've also noted exemplified disorientation while walking, with the ground feeling like it's moving up and down under my feet. My memory loss has also increased, as well as my fatigue. The left side of my face is also very numb, particularly in the cheek area. It feels very heavy.

Has anyone else experienced an increase of symptoms? If so, what did you do, or what were your next steps? I am at a loss for the next steps for myself because I don't want to seem overreactive to the symptoms, but on the other hand, I do NOT want to ignore them if the AN has grown.

Do I call my ENT or my neurosurgeon?

Thank you!
Heidi

AN discovered - 3/08/25 - 15MM with contrast MRI
Next MRI for growth - 11/20/25

Hi KathleenPollard

The ANA has several volunteers with a scleral lens and eye resources that might be helpful for you.

Please contact Melanie at the ANA for more information. melanie@anausa.org

Also, this organization has some great information

My Big Fat Scleral Lens: https://www.mbfsl.org/

Regards,

The ANA Team

Thank you!
The previous posts were very helpful.  Kathleen

Not quite what you are asking but 6 months five days after CK to treat my AS, I was wheeled in to the OR room for open heart surgery to replace my aortic valve. My recovery from both was great. The only interaction between the two was to delay my first follow up MRI. If you want to know more please ask.

How are you doing these days? I’m curious, what medications are you currently taking? I’ve been doing some research recently, exploring different treatment options on Canada Pharmacy Partner . There’s a lot of information available, and I’m hoping to find something that might be suitable for my situation. It can be overwhelming, but having a trusted source to look into helps a lot. If you have any recommendations or insights based on your experience, I’d really appreciate hearing them. It’s always good to know what’s worked for others when navigating treatment options.