My AN diagnosis and surgery

[Autumnbird]

The posts on this forum have been so very helpful to me since my AN diagnosis; I wanted to share my own experience, with the hope that it would help someone. I am a 47 years old female. I have experienced hearing loss and tinnitus since late 2016 or early 2017; it progressively got worse. I had a hearing test done that showed poor hearing on the left side but I foolishly assumed it was nothing serious. In 2020, I started to experience feeling of pressure and fullness in my left ear, which was more annoying when I would lie down. I knew I should see an ENT but thought I’d wait until the Covid situation got better. In July 2021, I saw an ENT who shared that hearing loss on one side could be indicative of acoustic neuroma and ordered an MRI. He was rather blunt about suggesting that my hearing loss seemed permanent and that traditional hearing aids won’t work (speech discrimination was nil). I remember coming home and crying. Even though I suspected my doc was correct, I tried to push those thoughts out and continued to hope that it was something minor that could be fixed. The MRI showed a 1.5 cm AN on the left side. I was referred to Dr Marlan Hansen in University of Iowa. I was very anxious about my appointment in September. I remember being frozen with fear during the meeting. He suggested translab approach surgery considering that my hearing in the left ear was all but gone. He did not seem enthusiastic about saving hearing nerve (for cochlear implants) but said that his priority would be to save the facial nerve and that translab offered the best route for that. I was also told that the tumor was 2.5.cm from front to back—this was something I did not know from the note in the MRI report. The tumor was deemed “medium sized”.  Surgery was scheduled for November. The wait was excruciating and I was panicky and consumed with fear. The surgery date came at last. I had an 8 hour long surgery that went as expected. Woke up with horrible nausea that was uncontrollable for 24 hours but got better after that and went away in a 5 days. I was in ICU for a day. The pain in head and ear got bearable enough that I could mange with Tylenol a couple of days after surgery. I was discharged after 4 days. The doctors and nurses were amazing and I don’t have words to express my gratitude to Dr Hansen and his team at Iowa. It has now been 7 weeks since I had my  surgery. I have been taking it really easy at home. The fatigue was expected but what I did not expect was the metallic/burnt taste that has continued since my surgery. Reading about it in the discussion forums on this website has been very reassuring! I will see Dr Hansen in May to discuss options for SSD. I am not a candidate for cochlear implants since the nerve was removed during surgery but I think I will be considered for CROS or BAHA. Please feel free to message me if you have any questions. I wish everyone on this forum good health and positive outcomes!

[Greece Lover]

Thanks for this update. Glad you’re doing well! I had the metallic taste too and it went away in a month or two.

[Autumnbird]

Thanks, Greecelover!

[MariettaJoker]

Autumnbird,

Our stories are somewhat similar. I'm a 60 year old male that first had hearing loss in my right ear at about age 55. I got a hearing aid in the one ear and the ENT never mentioned MRI. Fast forward to September 2021 (60 days after I retired from AT&T after 36 years) I suddenly had a big decline in my right ear hearing to the point I was deaf in that ear and I started getting some right side facial paralysis. At this point the doc ordered an MRI and we discovered I had a 1" tumor on the right side.

I had surgery on 11/30/21 (trans method), amazingly I had zero dizziness or nauseous feelings which is VERY atypical and I was home in 3 days and pretty much normal except for some significant right side facial paralysis, including my right eye. I've got surgery scheduled to add a weight to my eyelid and we'll give the face about 3 months to see if I have any improvement and then we'll look at facial surgery to correct what we can. The doctor at Emory Hospital in Atlanta where I had the surgery isn't too optimistic that I'll get much back naturally.

Other than the facial stuff my recovery has been amazing. I've walked 3-4 miles every day since the day after I arrived home and I was driving in 3 weeks. My scar is healing nicely and already concealed in large part by my hair. I have to say that my recovery has gone much better than I expected and I'm so grateful for that. Now I've got to figure out the face!

I did move forward with the Phonak CROS-P hearing aids and they are working VERY WELL for me. If you can swing the cost, I highly recommend these hearing aids for SS hearing loss.

For anyone facing this surgery, don't be too afraid, it's likely your dread is worse than the final outcome.....

[Autumnbird]

Thanks for sharing, MariettaJoker! It’s great that your recovery has been speedy! Hopefully, the facial issue will correct itself naturally and you won’t need the surgery. It’s really quite amazing that you can walk that much so soon after the surgery. After reading your account, I feel I haven’t pushed myself enough to move around. I will try more in the new year  Many good wishes to you for the New Year!

[donjehle]

It has been a couple of months since your latest post on this thread, Autumnbird.  I'm curious to know how your recovery is going now.  Are you moving more?  Are things more 'normal' now?  Did you do CROS or BAHA?

I'm eager to hear how things are going for you now.