Three years ago today, my husband and I were sitting in the waiting room at UCLA Hospital along with about a hundred other people. The sun hadn’t yet risen. It was cold, and I was nervous. Tom was scared to death.
He’d read more about this procedure than I had; he’d done more research. Since what I had read scared the crap out of me, I didn’t bother to read more than the basics.
An Acoustic Neuroma (or more accurately called a Vestibular Schwannoma) is usually benign, slow growing, and lays on top of the acoustic nerve and the facial nerve (nerves 7 and 8, I believe).
It used to be a rare diagnosis; but acoustic neuromas are showing up more frequently.
There are two types of treatment; surgical, and Gamma Knife Radiation. I chose surgical, because I wanted that thing out of me.
So the surgery lasted 11 hours; for more detail, see this post here. I had a follow-up visit with my otologist at 9 months post-op – he said my recovery was going well but to keep up my walking and my balance practice, and he sent me to therapy.
That’s when I realized that the 3 to 6 months of recovery time was wrong.
For me, it’s taken a solid three years to recover, but I can finally say I’m good to go. My balance is good; the hearing in my right ear is gone, of course, having been taken out by going through the ear canal to perform the surgery – better than having my skull opened up! – but I’ve gotten used to being unable to easily echo-locate.
I’ve also gotten used to putting people on my left side, and reminding people if they’re on my deaf side that they might have to touch my arm to get my attention.
I didn’t go the “group” route when I was diagnosed; I’m not really that kind of person. But if you’re dealing with an acoustic neuroma, and if you ARE a group type person, there’s a good one called the Acoustic Neuroma Association. They have an interview with Mark Ruffalo, who also underwent surgery for an acoustic neuroma; his story is different from mine and totally fascinating.
I guess I just wanted to do a wrap-up, partly for me, partly for others out there who are undergoing the fear and fascination of having something growing in your head that doesn’t belong there. I do consider myself lucky. But the best part is, more surgeons are getting experience dealing with acoustic neuromas. More information is known. And more information is almost always better when dealing with someone mucking about in your cranium.
May all your days be blessed. Mine certainly have been. Oh – and Happy Anniversary to me. I think I deserve to celebrate.
Wow, Christine. although I knew you had a hearing problem with your right ear….because I sat on your right at a meeting and you told me, I had no idea what you’d been through. Glad to know that you came through safely and are doing so well. Glad that I’ve had the opportunity to meet you!
Tari, yeah – I remember that meeting, lol! I find it’s easier to tell people than to let them think I’m a snob when I don’t respond. Hugs hon!
Thanks for posting this, Christine. I’d never heard of the disease. I’m glad your recovery is complete.
It’s a nasty little bugger that demands perfection of the surgeons. The slightest slip of the knife can lead to loss of the facial nerve. Luckily, my neurosurgeon was the Chief of Neurosurgery at UCLA, and the only person my Neuro-Otologist would work with, because he works slowly, methodically, and does everything he can to preserve the facial nerve. I had the gold standard of surgeons. Downside was the incredible length of the surgery.
Christine, what a story! And how inspiring that you have come so far since that loooooooong day three years ago! (Come to think of it, perhaps it’s sort of appropriate that you would lose half your hearing on Beethoven’s birthday…) Sending you a happy hug!
Anne – totally appropriate! Beethoven’s Birthday! Such wonderfulness…thank you! The next time Jenn goes up north to see you (whenever you return from your world wanderings, that is), I’m going to hide in her suitcase. Happy hugs back at ya!
It’s amazing what you’ve been through. That would be one scary surgery. I love how you’re fully engaged in life, always dashing off somewhere, invested in something, giving back. It’s how you live your life, I think, when something scary has looked you in the eye. So glad your recovery has been good.
Hugs, Roben! I do my best.
Congratulations, Christine. You’re an inspiration.
LOL Emma. I’ve been called many things, but never an inspiration. I think it makes me feel squirmy…
Ha ha, sorry about that. No one likes that squirmy feeling.
LOL – that’s okay! New things to experience, you know! Cheers hon.
I know what you mean about your life changeing. It was 3 years August 2 since I had both knees replaced. Life changing… Learning to walk again, living without pain – wonderful! While not a brain tumor, still a watershed. I’m glad you’re still here! I’m glad your recovery is going so well. I guess I missed the loss of hearing in your previous posts – sorry about that, but better that than some other alternative we won’t talk about!
Damn skippy that’s a watershed, and I hope you celebrated your 3rd year anniversary! Hugs, Laurie!
Rock on, beautiful woman! Rock the hell on. Love you!
Love you too, Arwen. So very much!
Here’s to journeys, recovery, gratefulness, and friendship!
Yay, Dayle! Sending lots of love to you and your Mom and your man…hugs!
My daughter had surgery for an acoustic neuroma twice. It was scary! Every year she goes for an MRI and I pray and hold my breath. Nice to know another survivor. Happy Anniversary. 🙂
Twice? Oh Penelope – how did you stand it? I haven’t gone back in for an MRI since the one right after surgery – oh wait, maybe I did at the 9 month mark? Don’t remember. Gosh I hope she’s doing well now! Give her a huge hug for me, okay?
Wow, that’s scary. I’m glad the surgery was a success! I’ll remember to stay on your left side.
Ah Chaeya! I can’t wait until we see each other so often that you forget, lol! Hugs honey!
So glad that you’re doing well! What a challenge you’ve had. Thanks for sharing your story and encouragement for others.
Sharing is the least I can do. When I went online after my diagnosis, what helped me the most was the blog posts and videos of people who’d had the surgery. It was inspiring, and I vowed to do the same for others. Hugs, Julie!
Hey Prez. Christine,
Like some others, I had no idea the severity of what you had been through. I’m glad you gave us the link to your one-year anniversary blog as well. After reading both posts, all I can say is how truly amazing you are. I realize these posts are only a snapshot of the landscape worth of emotions you must have experienced, but the fact that you can retain a sense of humor in the face of something so terrifying is truly awe inspiring. Honestly, I’m pretty sure I would have passed out in the waiting room prior to the surgery. You are such a strong person. I sort of feel like a coward reading this because there’s something I’ve been avoiding medically for months now. It’s not life threatening… heck, it’s not even quality of life threatening (yet), but I’ve been avoiding making an appointment because I’m pretty sure I’m going to end up on an operating table and I just can’t do it. I’m too damn terrified and since it’s not threatening my life, it’s something I can put off. So to read about how you went through that and came out on the other side still smiling is just amazing to me. Thank you for sharing!!!
Aw, sweetie. Putting off going to the doctor is causing you undue worry. You never know – it may not be what you are afraid of, after all. Face it – get this worry taken care of, and soon. Go get checked out. Whatever it is, I’ll be happy to hold your hand. Let me know and I’ll be there. HUGS!!!
Wow, what an amazing story. You’ve gone through so much & yet those of us who “know” you on Facebook could never have guessed what you’ve been through. Add my name to the list of your admirers. Two and a half years ago, I had a heart attack–it was mild, not a big deal–but it changed everything. Blessings, my friend. )O(
Diane, it’s amazing what a health scare – little or big – does to our perspective, isn’t it? Sending love and blessings, and Happy Yule!