Hi everyone,
I am writing this post because a similar post helped me right after being diagnosed. Now it's my turn to help someone else in the same situation.
Here's my story
In March 2011, I woke up with "congestion" in my left ear. As the day progressed I experiences tinnitus and hearing loss. Interestingly enough, this had happened to my brother 4 years earlier and I realized it could be a medical emergency. I called my ENT and left work for a visit. A hearing test showed profound hearing loss. He prescribed me steroids and one week later my hearing returned to normal - I was diagnosed with sudden sensorineural hearing loss and that was that. I was never sent for an MRI.
Fast forward to November 2015. I was on maternity leave with my 9 week old daughter and I woke up with left sided facial numbness. I followed up with my primary physician immediately and she recommended andMRI and a neurology visit. The MRI on 11/18/15 showed a 3.2 cm AN. I was alone when I was told (I wasn't expecting to find out right then and there) and I was in complete shock. I read about it and what I read SCARED the holy hell out of me. On 11/24/15 my hearing went AGAIN and returned to mild hearing loss with steroids.
I am a physical therapist and I set up a consult with a local neurologist and colleague. He told me surgery was necessary and about potential facial paralysis, hearing loss, balance issues, etc. and I nearly lost my mind. I was to return to work from maternity leave in 4 short days. I was already stressed about leaving my new baby girl as a first time mom, but now this - how would I proceed? When would I find time for consults, let alone surgery? how would I care for my daughter post operatively?
I did A LOT of research in a few short days. I sent my info to HEI and USC. I booked consults with 3 top neurosurgeons in NYC ( I am from Long Island) with extensive experience with ANs.
After speaking with each surgeon, I was relieved to find that the risks were still there for all of the above, but they each expected a good outcome for me, although likely deaf on the AN side, like a lot of others.
I ended up having surgery on 1/19/16 with Dr. Michael Sisti at Columbia University Medical Center via retrosigmoid approach. I was in the hospital until 1/24/16 (delayed one day due to a blizzard). He tried to save my hearing, but once he saw my auditory brainstem response during surgery, he knew it was unlikely. I felt incredibly comfortable putting my outcome in Dr. Sisti's hands. He has a gentle and optimistic, but realistic way about him. He treats you as an equal and takes time to explain and make you comfortable.
My surgery was 9 hours long and the first 2 weeks post op were hard, but controlled with medication. My husband took off time from work and my mother as well so that my daughter (4.5 months) and I both had help at the time (I was waking every few hours to take meds and needed help getting in/out of the shower etc.).
At 2 weeks I was off all medication and I started vestibular rehab and began to help with my daughter again, at 3 weeks I ventured out of the house for lunch, at 4 weeks I was independently caring for my daughter including bringing her up/down stairs, baths, etc (although exhausted at the end of the day), at 6 weeks I was driving, and it has just gotten better from there. I am 11 weeks post-op and plan to return to work at 15 weeks post-op. If I had a desk job I would have returned already, but since my job requires me to bend, lift, squat, and keep patients and myself safe, it was recommended by my PT that I make sure I have my strength and endurance back before returning and my surgeon was in agreement.
I have SSD on my left and I am dealing with some residual visuo-vestibular issues that I am told will likely resolve with time and continuing my exercises. From 8 weeks on I started to forget I had a 9 hour brain surgery to remove a tumor! It's not an easy road and it's not a short road, but you can do it!
I have decided to take courses to train to do vestibular rehab so I can help people like us
And thanks, Eddie, for the information and encouragement you gave and continue to give!
If you have any questions, please feel free to contact me. I would be happy to chat with you about anything and everything I have encountered
