Hi, everyone:
It's my first time posting here, though I've been reading the forum for months. I really enjoy th community here
I wanted to share my story here, as well as get some advice and give any advice to those just going through the journey.
I was originally diagnosed on Jan 26th, 2015 after temporarily loosing my hearing in my right ear, out of nowhere. Steroid treatment helped it come back. It was small, about 5mm. I saw a few doctors and weighed my options. I decided on surgery. I didn't want to wait too long to do it, but I also didn't want to worry about what "might" happen if it grew larger/faster, especially as my husband and I just got married last year and are hoping to have a family very soon. I selected Dr Friedman and Dr Giannotta of Keck Medicine after referrals and months of researching for the best doctors in Acoustic Neuromas. The care I received and follow through have been outstanding. I underestimated the brain though. I’ve always prided myself on being tough, on being quick to recover but this was a totally different deal from any other kind of surgery. I thought that my tiny tumor wouldn’t be a huge deal for recovery. I was wrong.
My surgeons removed my tumor via a middle fossa procedure on Sept 1st and kept my hearing and facial nerves in tact, however, upon waking up, I had facial paralysis on my right side along with complete hearing loss on that side. The good news is that those nerves were firing the whole time during surgery (minus a blip on my hearing nerve, but that came back). Day by day, my facial movements are improving. My face is probably about 90% back to normal. My right eye still doesn't blink fully but it's close. My hearing though, has come back since surgery, but not 100%. I'm only at about 40-50% hearing on that side. I'm really trying to stay positive, as I know the outcome could've been worse, but not even the doctors thought I'd loose my hearing or have facial weakness so it was a surprise to all of us.
Recovery has been pretty good, for the most part. My balance was pretty bad for the first few weeks but I quickly compensated over the next month or so. I had done some vigorous exercise programs prior to surgery to help get myself in good shape so that I would recover faster and It definitely helped! My balance score at with my PT went from 13 out of 30 points to 28 out of 30 points in 4 weeks.
I know I have so many things to be thankful for - my mom coming to stay with me and take care of me during this time, my husband's dedication and support, all the friends and family who have come to visit and lent a hand, but some days, it's a little tough. The hearing loss is the most jarring for me. While I'm concerned about my face, I also feel confident that it will return. My hearing improvement seemed to have slowed down. With impaired hearing, it feels like my brain tires more easily trying to interpret what signals it can hear but maybe that's that case for anyone else who went through the same procedure with retained hearing? I push through a lot of the tiredness but try not to over do it. Anyway, my question here is, has anyone had a similar outcome with a middle fossa but eventually regained almost all hearing back? I'm growing to accept that my hearing may not improve much more but would love to know if anyone else had slow improvement in hearing that eventually came back.
Any other thoughts would be great
Thanks everyone, and happy holidays!
Best,
Tram
