When I realized what day it was, everything in me kind of jerked to a stop. Six years ago, I had surgery for an Acoustic Neuroma. 11 hours under anesthesia.
Two days after surgery.
You can read more about it in this post here. That’s the one year anniversary post.
Here’s the 3 Year Anniversary post.
To everyone who’s ever gone through something that had such a lasting effect on you, I understand.
Me? I am so very grateful to still be here. Sending love and hugs to you all.
Need a pick-me-up? Try Christmas Star, only .99! One reader called it “A sweet as hot chocolate, modern day fairy tale…”
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.
The summer between tentative diagnosis and the MRI that confirmed it.
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.
I walked everywhere that summer in Mammoth, always with a walking stick. My balance was beyond unpredictable.
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.
This is more for me – a need to get this out and on the page. You see, it’s an anniversary of sorts. A year ago on December 16, at this very hour that I write this, 5:30pm, I was still in surgery for removal of an acoustic neuroma.
But let me back up. During the 4th of July weekend in 2010, I worked a music teacher’s convention with a friend of mine, selling sheet music to whoever wanted to buy some. We were at the Marriott near the airport, in a huge ballroom with a hundred other vendors. Setting up, I kept getting dizzy and feeling nauseous. I brushed aside the feeling though, as I had too much to do, opening dozens of boxes and sorting through hundreds of pieces of sheet music. Going home that night gave me another jolt – my vision tunnelled a couple of times. It was late at night, I told myself. I was tired. I just needed to concentrate harder on driving.
The next day the head-spinning got worse. As people wandered around, the noise and the bobbing heads made me ill. A part of me thought – vertigo – well, I can handle that. Anyway, it was a difficult weekend but I got through it. My symptoms seemed to go away and I forgot about it – until Hubby and I started walking again during the long summer evenings. We found I kept veering off to my right and stumbling. He finally had to walk on my right side. That’s when I sat him down and said, look, there’s something wrong. I don’t know what it is and it’s probably nothing, but I think I need to see a doctor and figure this out.
One doctor led to another, which lead to my neuro-otologist, Dr. Akira Ishiyama, who just happens to teach that specialty at UCLA. One of the top dogs. HE will only work with one neurosurgeon, because this neurosurgeon will take the time to do the work with impeccable precison rather than speed. That neurosurgeon just happened to be the Chief of Neurosurgery at UCLA, Dr. Neil Martin. I had the gold standard surgical team. Which brings me back to the day of surgery.
It was a strange, lost day. I had trouble sleeping the night before; knowing someone is about to wiggle their fingers around in your brain isn’t exactly a soporific thought. But finally the alarm rang. We got up and dressed at o-dark-thirty, made it to UCLA hospital by 5am and filled out some minimal paperwork – most of it had already been done. Then we waited in a large waiting room filled with other people waiting to go into surgery for various and sundry reasons. All ages were represented; children sleeping on the chairs, couples in their 80’s, and everyone in-between.
The hubby was wigged, and doing his best not to show it. I played games on my iPod Touch, too restless to read. Finally my name was called and I joined the line. We were all processed – a nurse took each of us away, behind a door and then another door to a cubicle of a room with a bed and a chair and not much else. I undressed, put on their lovely gowns, kept my socks on, and waited, and listened to other surgical patients as they got ready and talked to the people that brought them.
My Neuro-otologist surgeon came by, and put his initials on the side of my head. My surgery was scheduled for 8am, but I could see my Neurosurgeon walking around in a suit – running late. He had charts to dictate or he’d get in trouble with someone. Finally they came in, put an IV in my left hand; the Head of the Anesthesia department came in to check on me, and tell me she’d be there during the whole surgery.
My Neurologist’s Chief Resident came by a couple times and assured me it wouldn’t be long. And then the wait was over – they wheeled me out of the cubicle, I waved to my husband with a smile, and they popped something into my vein and I was out.
Then I was back in. Amazing – I felt really good. Like no time at all had passed. Which – drat – it hadn’t. I had been out and my two surgeons had been looking at my last MRI, taken just two days before. They decided to go in through my Eustachian tube, instead of through my skull. Which meant a couple of things; they wouldn’t be cutting my skull open (YAY), and they would obliterate all the hearing facility in my Eustachian tube, thusly taking out all my hearing in my right ear (boo). And a bonus; they’d be pulling fat from my belly and sticking it into my head. Um, okay – but couldn’t they have taken more, while they were in there? But the changes meant I had to be mentally competent to say “yes” and scrawl my name. Which I did.
Both surgeons came and talked to me during this time; I did some joking around with them. Just so they would know that I’m a real person, not just an acoustic neuroma they were removing. The patient is not the procedure. But as soon as I signed off on it, they put me back under and I floated away.
Meanwhile, Hubby had been walking in the UCLA sculpture gardens when he got the call about the change in plans; he tried to get back to see me while I was still awake, but didn’t make it. He was going through a rough time; twice in his life, he changed on a dime, and both times it was due to something traumatic happening – once when a friend died in front of him. Worried that I might not make it, he was trying to figure out who and what he would be. Luckily I made it, so he’s stuck with me, lol!
The next time I woke up, I was already in ICU. This time, I knew I’d been through something. I had intravenous feeds on both sides of each hand (that’s four); one in the side of my neck, in case of extreme emergencies; and one in my ankle, just in case. A tight bandage around my head, heart monitor thingies and a catheter completed my medical equipment ensemble.
Ice chips brought on nausea. I felt brittle, parts of me were sore from being in the same position for so long. The time? Hubby says close to 10 pm. I’d actually been in surgery for 11 hours. Hubby kept our friends updated via text messages every time he heard. He was allowed to see me in ICU; his eyes were so worried, until he touched my right cheek, and I smiled. My whole face smiled, and he grinned at me. I was maybe a little weak on the right side, but all functionality was there. My surgeons had done what they said they would do from the very beginning; take out as much of the tumor as possible while keeping as much of the facial nerve intact as possible. Here’s a couple pictures of my staples, taken the day after surgery when they finally released me from the head torture. Note the two places where the docs put their initials (the higher place was the original entry site):
I was in the hospital a total of 4 whole days; they discharged me on the 5th day. The 20th of December, five days before Christmas, I was home. And my recovery began. The next few days, I found tape residue on the strangest parts of my body, which really made me wonder.
It’s been an odd year. My balance, that had gone missing in the months prior to surgery, didn’t all of a sudden come back; when I went to see my neuro-otologist, he said (it had been nine months) that now I was ready for rehab therapy. Um – it would have been nice to know it would take that long! But I went, and I’m better.
Mentally, I was squirmy for a long time. Writing has been difficult for me, and I’m grateful my publishing house is understanding. Even now I feel like, while I’m finally at about 90% of where I was prior to surgery, I’m not totally back. I may never get back. But that’s okay – I’m learning to deal with it. With the mental squirmies and with the wobbly balance. It doesn’t happen often, either the squirmies or the wobblies; when it does, I just have to laugh.
The above picture is three days after surgery – I didn’t feel “me” until I got my hands on the keyboard again. That’s the view out of my room at UCLA Hospital.
So; it’s been a year. I’ve found patience (especially after breaking my leg). I have gotten some amazing writing done this past month or so; plays. Writing I’m very proud of. The novel is almost done as well, and I’ll be turning it in soon. The job has been the final blessing of the year – it’s brought me back to being more “me”. That’s the only way I can describe it.
Above all, I have my husband, my hippy-guitar-jester guy who loves me, treasures me, and is there by my side, always, ready with a steadying hand. I know I could have gotten through this year without him; but I am so very, very grateful I didn’t have to.
I know I’ve been lucky, all down the line. Top notch doctors; excellent nursing care, both at the hospital and at home; awesome insurance; a loving family, friends who helped out. Most of all, the tumor hasn’t grown back. Plus my scar is small, and you can’t see it unless I show it to you. I’ve been very, very lucky.
But still, I feel my life has been divided. Before acoustic neuroma diagnosis and surgery, and after. It’s not something you have, and then forget about. It’s a game changer, for sure.
As I read over this, I realize I’m leaving a lot of “stuff” out. But if I put everything in, this would be a novel, so…
This has not been the easiest year for me. Back in December, a major life-changer happened to me, which slowed me waaaay down in many, many ways.
But it’s seven months on now. I should be back up to speed. I should be dancing in the streets, getting fitter than ever, and having parties. Right? Well…
The dizziness is still there, but the latest MRI shows no reason for it, and I’m in limbo until the docs at Neurology decide where I really belong. In the meantime, I’m not sure if my surgeon’s office managed to get the paperwork back to disability on time – if it’s not there by tomorrow, I’m off disability which really sucks. Why? A job I went for, that I really wanted, was given to another person – and truly, it should have been given to that person, so there you go, but the steady income would have been nice. And then, on Friday, I broke my fibula, way down by my ankle.
This is about where I broke mine, on my left leg.
Say what? How? Um…would you believe, walking? I didn’t trip over anything. I didn’t stumble. My ankle just refused, went POP! – and down I went, in absolutely the most pain I can ever remember being in. Of course, I was alone in the house. Isn’t that always the way? Hopping everywhere HURT like hell. Crawling was good, but slow – and hard to carry anything when you crawl. Seriously. So I suffered, with an icepack on my ankle, propped up, and watching the news until one of my sons came home.
An early trip to the doc on Saturday proved it to be broken, when I had been sure it was just a terrible sprain. No such luck (but then, terrible sprains are known to be harder to heal than broken bones…so…?). They gave me an airsoft cast, crutches, and a referral to an orthopedic surgeon. Everything I’m seeing on the internet tells me it’s a 6 to 8 week recovery time, with NO WEIGHT on the foot. That’s totally
rubbish and I refuse to follow this advice what I expected; but now that I have crutches, I hate them. HATE them.
Seriously? You give a girl, who’s already dizzy 85% of the time, a pair of crutches? Someone who’s not totally sure where the ground is at any given time, and you want me to take BOTH FEET off the ground and rely on TWO STICKS shoved into my now-aching armpits? SERIOUSLY?!!! Are you DELUSIONAL, or is it just me?
Yeah, there’ve been some falling issues. As in, using the damned crutches, I’ve totally lost my balance and fallen flat on my face. More than once. Luckily inside and on carpet, but still. Oh, and I’ve fallen into the bathroom sink, and sideways into a doorway…you know, now that I think about it, that’s a lot of falling for less than 24 hours. So I use the damned things but it’s crutch, step-step. Crutch, step-step. Not ideal and I recognize that.
I’m hoping against hell that the docs next week give me a walking cast of some sort. I am DESPERATE to keep both feet on the ground, and a wheelchair WILL NOT WORK in my house. It was built in the 1960’s – narrow hallways, 30″ doorways, and all. Not to mention the 16 years’ worth of clutter we’ve piled around the house. It’s all a trap for the unwary. (Why, suddenly, do I feel a need to get rid of 50% of our furniture?)
So while I’m in full pout mode, I’m trying to be a good girl. Getting up infrequently. Using my crutches properly most of the time. Keeping the leg elevated, and blah blah blah.
And I’m writing. It’s the only reason I can think of that I broke my ankle – the Universe wants me to sit on my ass and write instead of, oh, get a steady-paying job. And if disability is out the window? I keep telling the Universe that threats don’t make a writer more productive. At least, they don’t make THIS writer more productive.
I’m trying hard not to snarl and bite at my family, especially my poor hubby who did NOT need me crippled at this point in time. He’s feeling quite put-upon, even while he realizes I feel the same thing a thousand times more than he does.
So I’m saving snarling and biting for my work. Since I don’t get fancy cable (at almost $70/month, oh come on – it’s a time-wasting luxury), I only watch a couple soap operas during the day. The rest of my time (since I won’t be cleaning house any time soon) will be spent writing. I’m a captive to my work.
All in all, I’m okay with that. I just wish I didn’t have to go through the pain process. I’ve had more than enough of that this year.
I guess there’s only one thing left to do today…oh, hubby….could you please pour me a glass of wine? </end rant>
~ ~ ~
Have you read DEMON SOUL yet? You can find it at Crescent Moon Press or Amazon.com. Happy Reading!