Update: Recent MRI shows 100% AN removal

[Alyssa]

I always remember the day I had AN surgery to complete 100% AN removal at UCSD on 9/18/18, although Dr. Fredman and schwarz tried unsuccessfully to preserve the auditory nerve. I am a little bit upset to lose my left hearing. I spent nearly a year rehabilitating weak facial nerves, doing exercises including yoga, Pilates to restore balance, and occasionally using Bose Soundcontrol when there are many people around me, which greatly helped me hear and communicate in crowds.

After the first surgery, MRI showed normal in 10/2029, 100% AN removal.

I just had a second MRI recently because of COVID and it shows normal, no regrowth. The doctor said that if both times were normal, the tumor was completely removed, which would be a perfect end to the operation.

I wonder if any new technology to help hearing now. I saw Bose hearing aid was very small, looks like nice. Still worry about Bluetooth around my brain, not use the device very much.

Anyway, I am so appreciated our forum support. I got lots of information and found the best team of UCSD nearby my home. Although my hearing not perfect anymore, life is still beautiful. Always think about the positive side and take time to recovery.

[donjehle]

Thank you, Alyssa, for sharing that great report of your second MRI!  That is wonderful!

I don't know what technology was available in 2018 (since I didn't pay attention to it back then), but I keep hearing (no pun intended) that the technology has improved greatly over what was available five years ago.  So, it might be worthwhile to visit an audiologist to explore the newest options.

My AN destroyed my hearing in my left ear while I was watching and waiting, so I am essentially deaf in that ear.  I still have not had treatment for my AN.  But I use a CROS system which consists of a transmitter (which looks like a hearing aid) with microphones which I wear in my AN ear, and it transmits sound on my left side to a receiver in my good ear on the right side.  So, I hear anything spoken on my left side in my right ear.  Like you, I am concerned about Bluetooth around my brain, but I put my system in Airplane mode which turns off the Bluetooth.  I can still hear everything fine without the Bluetooth, but I can't listen to the TV remotely or connect directly with my cell phone without the Bluetooth on.  But, for me, that's okay.  I can hear fine with my CROS system with the Bluetooth off.

I wish you continued success on your journey!

[Alyssa]

Thanks for sharing this wonderful experience. So CROS system has to see the doctor, correct? I definitely will check the new technology.

Actually, I was watching and waiting since I was diagnosed AN in 2007. It was growing very slow, 0.5mm per year in average. Until 2018 the size is 13X8mm, my hearing dropped 30%, and started to have unbalance problem. Doctor told me I had to think about the treatment seriously. I still felt I was very lucky to save my facial, recovered from the surgery.

[donjehle]

Yes, Alyssa, the CROS system can only be purchased through an audiologist who then adjusts it for your particular needs.  For example, I work in a hospital, and we wear masks all day long.  My audiologist did a setting in my system where I can hear people speaking through masks better.  I have another setting to use when I am in a restaurant, and there are people around me talking (I couldn't believe how well that setting worked!), and a normal setting.  It can be set for listening in a church or movie theater.

There are some over the counter systems, but I don't think they have the controls to adjust the sound like what the audiologist can do.  Part of hearing well is the hearing aid you purchase, but the other part is the skill of the audiologist, in my opinion.

You are fortunate to have saved your facial function, Alyssa.  Some lose theirs.  It is good that you had your surgery at UCSD.  They do great work!

Thank you for sharing!!!  It helps others who don't post but read through the forums.