Brain Tumor: What to Expect During an Acoustic Neuroma Surgery
This article is part three of a series on our family's experience with an acoustic neuroma brain tumor.
This is a continuation of the story of my husband's experience with a brain tumor called an acoustic neuroma. This is part three of a series. You might want to read part 1 and part 2 as well, which details the shocking and totally unexpected diagnosis and our coming to terms with one of the "best brain tumors to have". Please note that I am writing about my husband's brain tumor, which means my point of view is that of a loved one, not the person who experienced the brain tumor itself, first hand. However, this gives me a unique perspective into the process, since medications wiped away some truly awful memories of the time after the surgery. If you are anticipating a brain-tumor operation, I would advise you to enlist a loved one to read this article and counsel with you about whether the account is fitting or uplifting. Parts of it are very difficult for me to read in hindsight, but I wish I had been given better emotional and mental preparation for this uncommonly arduous experience.
- (Part 1) Brain Tumor: Diagnosed with an Acoustic Neuroma
When my husband learned that his MRI showed he had a golf-ball sized brain tumor behind his left ear, our world turned upside down. This brain tumor, an acoustic neuroma, was diagnosed before the tumor caused critical damage.
- (Part 2) Diagnosis: Our Acoustic Neuroma Story
While waiting to have a life-changing surgery to remove a benign brain tumor called an acoustic neuroma, we needed answers about my husband's condition. This hub is an account of our personal experience during the diagnosis phase and is part of a ser
A Successful, But Scary Surgery
I will begin with the end, because if you are anticipating a surgery like this, you need to know that it was a success. It was a huge success.
The day after surgery was one of the worst days of my life. I was just a bystander, watching my husband suffer through the pain of post-surgery intensive care, as he relived a phantom memory of a ventilator tube that had been inserted in his throat for 13 hours. In his semi-conscious state, it was like watching as he was choked by an invisible assailant. In his mind I was his angel, living through post operative hell and standing steadfastly by his side. I didn't feel like an angel. I felt powerless and helpless. I was thankful for his surgical success, and one more day of life. But this...
For 6 hours after the grueling 14-hour surgery that began at 6 a.m. the day before, and ended at 10 p.m., and after an almost sleepless night, I waited with him and I watched him war within himself, waiting for his brain to sort out the trauma it had experienced. For surgery is trauma, and there was the pain. The animal keening he made as he struggled to voice his experience when he shouldn't have been talking, but medically could not stop himself. His throat was raw from the ventilation tube. The doctors had restrained his arms so that he could not accidently touch his incision site. It was difficult to see. So I stood by his side after his surgery, in the intensive care unit he shared with others, until I found my way back to the waiting area where I gave way to absolute exhaustion, and just slept. Fortunately, my husband says he remembers nothing of the first days following his operation. He was heavily medicated with a drug that helps a person forget.
Another distraught spouse stood by my side and prayed with me in the hushed and lonely stillness of the surgical intensive care waiting room, and showed me how to make the chair into a sleeping bed, so I could sleep a room away from my husband who was not my husband. At that late and lonely pre-dawn hour, the support staff-people were all at home, and the only inhabitants in this part of the hospital were the night nurses, the patients, and a few loved ones.
Another woman showed me the closet where the sheets and pillows were kept, before she wandered off to her quiet corner of the room. She was a pro, and that meant that her situation was worse than mine.
I met my angel friend in the elevator. We kept running into each other. Her story was much more difficult than mine. Her husband's prognosis wasn't good. But she was a lifeline. My angel and I knew each other's thoughts and articulated each other's worries, and supported each other with hugs. Our encounters were brief, but it was a comfort to know someone else understood, or at least was living, what I was. Of course, she didn't understand any better than I did, what we were experiencing. The anesthetic numbness we both felt was like a walking dream, and I questioned if this was indeed my reality. Only a week ago our lives were caught up the experience of perfectly mundane worries, like preparing a lesson for our cooperative preschool and making arrangements to see my teenaged daughter perform in the Wizard of Oz.
At a hospital you are reduced from being an actor in your loved one's affairs to being a mere audience member, seated in the back row, so that even though you want to see the entire stage of your beloved's suffering, you only catch the end notes. And worse yet, before the play is over you are asked to leave because you didn't arrive with the right ticket.
Intensive care isn't like they show on television. My husband's bed was in a joined room separated by a thin curtain. My husband emerged from surgery confused and in great pain. His throat gurgled and his tongue swollen, his suffering was a shock to me. His head was bandaged with thick white gauze, but I could see the blood that had flown into his ears and dried on his neck, and I could still smell the special antiseptic they had given him from the morning before, at 6 am when he had traded his funny ha-ha pajama pants for a surgical gown. I had helped wipe his shoulders and back with a giant antiseptic towlette that had a peculiar nose-pinching odor. It took me several days to piece together the smell memory that it evoked. If it were a perfume, it would be sold under the label Eu de Lysol Disinfectant Concentrate. Seventeen hours later I could still smell the antiseptic on his face, and as I gently kissed his chin, I could taste it on my tongue. Every time I walked into his room, I religiously applied the antiseptic cleanser to my hands that was in dispensers on the walls and outside the doors.
Why am I sharing this with you? Am I a pay per click shock jock? No. This really happened, and it was my experience while it was my husband's experience. And if you are the spouse of a brain tumor patient, I would urge you with the greatest feeling to surround yourself with a loving support system. I did have help. But it wasn't enough. I am thankful I wasn't totally alone, though at times I felt like I was. But if you have family, now is the time to call them. Lean on them. Use them. Cling to them. Because the doctors never told me what to expect. And it was a very emotionally draining time.
Driving to the Hospital, Day of Surgery
Earlier on the day of the surgery, we had driven in the predawn early morning from our home on westbound I-80, making small talk and marveling at a world we rarely see. Even most truckers are asleep at four a.m. He walked back into the hospital on Halloween day, another Monday. He had been granted an unusual reprieve from a sudden, enforced stay at the hospital, and weeks of waiting for a surgeon while his situation was critical.
He was prepared with a sense of humor and a pair of black sweats decorated with laughing glow-in-the-dark skulls. Only one of the nursing staff noticed his little joke, which didn't seem very funny to him, now that he was facing the unknown. I stayed with him while they put an IV needle into his arm, while he boasted of his superhighway veins, how big and easy they were to access, and how popular that made him with the blood bank volunteers once a month when he was donating blood.
They gave him a hospital cap and an anesthesiologist came and spoke to us briefly before giving him the medication that would prepare him for surgery. We were informed that Nathan would also be receiving a secondary procedure that would insert a tube into his skull to remove the fluid that had been building pressure inside his brain. It was the first we had heard of this procedure, and it was a mildly disturbing development.
The "minor procedure" was to remove a dangerous amount of fluid buildup within his skull. But hey, what's another hole in the skull when you are removing a golf ball from someone's head?
They'll insert the ventricular drain into his skull and will only turn it on if it becomes necessary, but it is better to do this procedure now rather than later, the nursing staff explained in an everyday voice, that made this sound almost normal.
But wait a minute. Hold on there pardner. Did he just say that he was going to stick a tube into my husband's skull, just in case?
For an infintismally small portion of the population, the doctors and nursing staff that work in the surgical preoperative care, this was normal, if not mundane. After the papers were signed, the anesthesiologist had already given Nathan a powerful sedative. Before I could say goodbye, his eyes began to gloss over and I knew he couldn't see me as they rolled him down the hall into a forbidden corridor.
As they rolled my husband away, the nurse smiled at me and said in a reassuring voice, “don't worry, it's a long surgery, but you can call into the operating room to the nurse there anytime you would like to get an update.” Then I was given a floor and an address where I was to sign in and wait for further news about the surgery.
"...but you can call the operating room anytime you would like to get an update."
Oh, They Should Have Never Told You That...Hours of Anxious Waiting
It is now 9:00 in the morning and we have been at the hospital already for three hours, which felt like only a matter of minutes in the end. The hospital is a labrynthine collection of tall buildings that seem to have collected in a jumble, like so many university buildings do. Finding my way to floor 6 on elevator G, the label on the grey double doors says “Day of Surgery Waiting Room.” The large room is divided into cubbies and almost looks like a cube farm at a start-up company I once worked for. Televisions and chairs and magazines are located in the expected places. I am alone for the time being, and look around for a complicit face, but finding only anxious people who are too absorbed by their own worries to notice a lone woman looking for a reassuring smile.
On the way in I see a woman sitting at a desk. She is tall, elegantly dressed, and wearing an annoyed expression. She tells me to sign in the visitor log book and instructs me to leave my phone number in case I feel the need to leave the area. Then she points to specially-designated meeting rooms off to the side of the waiting area. Then comes a speech. In a not especially convincing tone of voice, she informs me that some doctors prefer to meet in private in these rooms to conference with patient's families. Do NOT be alarmed if you are instructed to go into one of the private conference rooms. It doesn't necessarily mean anything bad has happened. I can tell that this speech is delivered several times a day, and she doesn't particularly enjoy this part of her job.
I am not convinced.
What I really want to know is, when can I hear about my husband's surgical progress. “Down in admitting they said that you can call into the operating room every few hours to get an update from the surgical nursing station. I was wondering if you had heard anything yet?”
A flash of anger crossed her face before she remembered that I didn't know any better. “Who told you that? What was their name?”
I didn't know any better at 6:00 a.m. I was too busy being disturbed by the smell of Lysol and the sight of the nurse drawing a large red X on the side of my husband's ear with a Sharpie marker, the one where they had found the brain tumor. The brain tumor that would be removed during today's 13-hour surgery.
“I don't know. Only they DID say that the nursing staff would keep us informed of his progress.”
“Ma'am, the nursing staff is far too busy to answer the phone all day. You will have to wait until they contact you for information.”
My eyes drifted uncomfortably to the rooms, the NOT BAD NEWS rooms behind her.
I drifted through the Day of Surgery waiting room, looking for a corner television or a magazine cover that would serve as a distraction. Small family groups were clustered in the areas and the already the waiting room was surprisingly full. With no news and a long day of waiting ahead of me, I looked for a sympathetic face, but eventually settled for a free seat across from a man who was engrossed in his own personal crisis.
His head was bent down and his forehead creased. He rubbed the back of his neck with pain as he stared vacantly into a three-ring binder full of papers. I peeked at the contents, and saw to my dismay that the ledger was full of medical bills for cancer treatments. He was so deeply immersed in his own personal blend of pain and suffering, I didn't even try to strike up a conversation. He looked deeply upset, and angry. I wanted ever so much to reach out to him, to say something calming and soothing, to make up for the impersonal quality of this large waiting room. I was alone and anxious, but he was keeping bad company in here. I wondered what worries kept him up at night. Was he losing his house, his job, his mind? I had once known a woman back in Arizona who had lost her life to a sneaky and mean form of cancer. The tumor had quietly grown on her spine and taken her after a painful struggle that made her bitter in the end. Her grieving husband was left with 3 children to raise, a business in shambles, and medical bills that were unthinkably high and impossible to pay. This man in the waiting room was impervious to my presence, and instead, I stood up, and walked around the room, stopping in front of the vending machines.
I waited alone till almost 11:00 a.m. Before Nathan's parents arrived.
Nathan's mother had brought things to do, and I was comforted by their presence. I needed to have them there with me. I was glad they had come. But earlier in the day the nurses said that the surgery would probably take 13 to 14 hours, and after the first hour and a half, we had little to say to each other. I picked up my camera and wandered out of the waiting area and into the main hospital. I needed to keep moving, because that waiting area had been designed for the outpatient families who had little to worry about, even though they had been herded into the neutrality zone of the waiting area for the duration, because nobody really knows if they will need to be shuffled into the NOT BAD NEWS rooms, JUST IN CASE rooms.
Minutes and Hours
Nathan's Mom and Dad followed me downstairs to the cafeteria I had found earlier in the week when my husband was waiting for surgery, under the watchful care of his neurosurgeons. I had started to feel a sense of familiarity with this hospital already. I didn't like being on personal terms with such a place, though I was thankful for the artwork displayed on every floor of the hospital. It was striking, lovely, and best of all, distracting.
We passed kilim rugs and antique surgical equipment displays on our way to eat. We took our time selecting a meal and eating it in the hospital cafeteria. Our meal took less than an hour and we still had many hours of surgery left to wait.
At about 5:00 in the afternoon, the surgical waiting area closed for the day, and we were shuffled to the intensive care waiting room, which was almost empty. Most of the surgeries for that day were already over, and the hospital volunteer who staffed the desk at the waiting area was also gone for the day. I got my fourth or fifth Pepsi of the day, and sat down with Nathan's folks. The children would be home from school and waiting to hear news. Nate's folks decided to go home to my house to look after my children, and left me at the hospital to wait for news of the surgery.
Finally, at about 9:00, the surgeon came into the waiting room, still wearing his surgical gown, and told me that they had managed to remove 95% of the tumor. They left 5% of the tumor on the brain stem, but they removed the root of tumor. For just a moment I visualized the brain tumor growing on my husband's brain stem like a large dandelion, with a deep tap root. The surgeon, Dr. Hansen, said that the surgery had been a success, and that my husband would be wheeled into the intensive care unit momentarily.
Has a brain tumor affected someone you know?
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© 2012 Carolyn Augustine