Understanding the Diagnosis: Our Acoustic Neuroma Story (part 2)
When my husband was diagnosed with a brain tumor known as an acoustic neuroma, our lives were turned completely upside down. This is part two in the series. Click here to read part 1 of our story.
In the short space of three days my husband had gone from a busy, but often over-tired 45 year-old father of four to a man with a brain tumor who was being carefully monitored in a university research hospital, and waiting for a life-changing surgery.
But finally, after three nail-biting days of hospitalization that focused on immobilizing my husband in a dark and lonely hospital room, the team of specialists at the university research hospital had some answers for us. We were relieved to know that someone finally had some answers for us, even though anicipating the answers were a bit terrifying. This was after three days of "I don't know."
We were looking for answers to some obvious questions: What are the chances he will live through the operation? was the scariest. The second one was almost as difficult to ask-is it cancer? I had known a vigorously healthy 82-year old cowboy who had been everywhere and seen everything in Wickenburg, Arizona, and I had been hired to help him put together a web site for a tourism business he was trying to launch. Our first meetings were cordial and businesslike, but as we worked together his entire personality altered into angry churlishness. Only weeks after we began working together on this project he was diagnosed with a malignant tumor of the brain, and two months later he was dead. My life experience had placed me in the path of another person who had a brain tumor. Her operation was in 1983, and though she had a skilled surgeon, her life was permanently altered as well. My grandmother was diagnosed with her brain tumor in her late 40s. She had been given a shunt to help drain fluid from her brain and it was a permanent part of her physiology for the rest of her life. She survived the surgery but her quality of life was compromised. These two experiences with brain tumors gave us a hope that my husband would be able to survive a surgery, but we needed answers.
Why An Otolaryngologist?
As my husband was wheeled to another wing of the hospital, down elevator G, across a long series of corridors and hallways, and to a separate building, then up elevator L, we asked ourselves why Nathan was being sent to consult with a hearing specialist. We knew that the neurosurgeons would want to do their best to avoid damaging his hearing, but we didn't yet realize the specialized nature of his tumor.
After waiting a little while, my husband first received a series of hearing and balance tests. Three different doctors completed tests on his hearing, where he was tested on his ability to hear and process sounds. The doctors quickly reaffirmed what we had learned earlier in the year from an audiologist. Nathan's left ear was no longer functioning correctly, and nerve damage to the ear meant he had almost complete hearing loss in that ear.
Next Nathan was asked to walk heel to toe, which he could not do. The Oto doctor watched carefully as he walked down the hallway, making notes about how his gait was affected by the tumor.
Finally, we sat down with the senior doctor, whom we learned would actually be the lead surgeon during my husband's surgery. Immediately, he began to fill us in on the information that we had been longing to hear. His brain tumor was called an acoustic neuroma, and though brain tumors are uncommon, this is one of the "best" ones a person could have. According to the doctor, in 99% of cases, these tumors are NOT CANCEROUS, and many people live with them for years without needing an operation.
Then the doctor paused while we absorbed this bit of wonderful news. Rays of hope were dawning within us. Not cancerous! Not cancerous? NOT Cancerous!!!!! My husband and I locked eyes for just a moment, sharing a moment of gratitude and relief.
The doctor's next news was not as good. He said that many people who have small acoustic neuromas live life normally and don't even realize that they have a brain tumor. These people often live with their tumors for many years before they ever consider surgical removal. But my husband's tumor was causing searing headaches daily, and his balance issues were also getting worse. He didn't use these exact words, but we later learned that my husband had one of the biggest acoustic neuromas this hospital had ever laid eyes on. We are waiting for my colleague, a neurosurgeon, to get back from vacation. Your surgery will be Monday, in three days. The surgery was expected to take 12-14 hours.
Next the doctor explained some of the risks of the procedure. There are different ways to operate on the brain tumor. The doctor then explained that the extensive battery of hearing tests was to determine if his hearing was worth saving. Entering from behind the ear would permanently damage his hearing, but he had no hearing there to save. This made the doctor's decision, well, a no-brainer! Although this operating method would damage his hearing, it was the safest way to preserve his quality of life in every other way.
One of the many ironies of life is the way we make light of things we are not experiencing. In my day, in spite of a grandmother that lived the second half of her life in the shadow of a brain tumor, and knowing the gentleman from Wickenburg who passed away from a malignant brain tumor, a phrase that was often known to pass my lips was, "well, it isn't brain surgery, ya know!"
But this WAS brain surgery, and the risks were scary, but not what they could have been. Coping with the news about the brain surgery was difficult, but honestly, managing it in the moment was all about putting information into perspective.
My husband knew he might experience damage to a facial nerve which could cause facial droop, numbness, or paralysis. But the scariest possible effect of the surgery was that my husband's ability to swallow could be affected. The doctor told us this was a very unlikely effect. But still, the news was chilling and it bothered me deeply.
Still, we were relieved to hear that they expected he could completely recover from the surgery in 6 to 8 months again, and possibly even drive after the surgery. We found it almost impossible to believe that the doctor even thought it possible for my husband to return to work within 8 weeks.
Our hopes had been dashed only a few days earlier when a nurse from the neurology unit had said that most people don't ever drive again after their brain surgeries, at least not for 6 months. I don't remember the context of this information but it created a cascade of worries about our family's future that haunted me for weeks. My husband is the sole income provider for our family, and if he were permanently disabled...I just didn't want to go down that road.
Managing Expectations...What They Didn't Tell Us
We wanted to know if we could go home and wait for the surgery with our family. We lived an hour away from the research hospital in a small Iowa town. Our daughter was performing in a play, and we knew that in spite of everything that they had told us, surgery always entails risks. We had seen our share of TV medical dramas and that really didn't help, either.
Nobody wanted to voice these real fears, but what if these were my husband's last days with our family? We wanted our children to remember my husband at home, not lying in a hospital bed with bad lighting. We begged the hospital staff to send my husband home.
We spent almost an entire day hounding the doctors. My husband was very ill. The doctors had kept him at the hospital, practically immobilized, because his brain was swollen, and he was actually experiencing brain shift. This is a phenomenon that can precede stroke, and is a dangerous condition. On further reflection, we were very lucky we made it to the hospital in time for a diagnosis. But the doctors never used the words 'brain shift.' with us. I think this is because Monday was the earliest they could schedule a surgery, unless events required them to triage him into an emergency surgery.
The doctors firmly told us "no," that he should not go home to wait for the surgery, so with Grandma and Grandpa now at home with my youngest, our 13 month-old boy, I loaded up the family minivan with my three other children, and a bag full of presents that included plastic skulls from a party store, black sweat pants with white glow-in-the-dark skulls, and a robotic bug.
When we arrived at the hospital on Friday, we had some surprising, wonderful news: the doctors had relented, with a prescription for meds that would help relieve the swelling and the headaches, and a warning to allow him plenty of bed rest. My husband was being sent home for the weekend.
We were overjoyed. He would be allowed a weekend with his family before returning back to the hospital, and that meant he would be able to go to see the Wizard of Oz. There's no place like home.
Other Brain Tumor Experiences
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