Brain Tumor: Diagnosed with an Acoustic Neuroma (part 1)
Down the Rabbit Hole
Our world was turned upside down when my husband received the results of the MRI test his family physician ordered. He had gone into the hospital and had the MRI performed at 6:30 in the morning, and by 1:30 in the afternoon, he had been told the words no person wants to hear over the phone: "you have a brain tumor."
The signs were insidious and misleading. My husband's health had been declining at first slowly, and almost unnoticably, but later his symptoms became more intense and frequent.
Some Symptoms of Acoustic Neuromas
My husband didn't know he had a brain tumor. He thought he had age-related hearing loss caused by a traumatic ear infection about 5 years earlier. He dismissed his symptoms until he could no longer ignore them. By that time his acoustic neuroma had grown to the size of a golf ball and was causing swelling and some brain shift, which is common in stroke victims. Some of his symptoms included:
- Loss of balance
- Deteriorating handwriting ability
- Brief but searing headaches
- Double vision
- Hearing loss
- Trouble sleeping
Some events are so fundamentally life-altering that they are seared in our memories forever. Such public events include the day the space shuttle exploded, or the events of September 11, 2001, or for older generations, the day JFK was murdered, or the bombing of Pearl Harbor. For us, the day my husband was diagnosed with a brain tumor was just such an event, and probably no less traumatic for our family.
Just that morning I was teaching my children's cooperative preschool group, and confiding to one of the young mothers that I was concerned about my husband's weird combination of headaches, difficulty walking, and complete hearing loss in one ear. As strange as this sounds, even with these troubling symptoms, my husband and I weren't really ready to accept the implications of these symptoms. And when his family doctor ordered an MRI, neither of us felt any need to panic.
Not that I wasn't worried. I had repeatedly asked him to schedule an appointment with his doctor. Deep down I knew something was terribly wrong, and the things happening to his health were NOT normal symptoms of aging, or even of hearing loss, as we had first thought. He was only 45.
That afternoon at 1:30, I received a telephone call from my husband, who had gone in early for his medical test at the local hospital, then hurried over to his workplace to put in a full day at the office. He said, "Carolyn, the doctor got my medical results. I have a brain tumor. He told me to leave work immediately and go to the emergency room in Iowa City. You'll need to drive me there. They're going to operate as soon as possible."
At that moment my family's life literally froze for almost 2 1/2 months. On the diagnosis day I withdrew my two older children from school. My oldest daughter knew something was terribly wrong, because when she asked me why I was pulling her out of school, she asked me if something was wrong, and I couldn't find the words to answer. She and her father were crying on the front lawn as I waited for a friend from my church to come and take my children and contacted my mother-in-law and father-in-law, who had their own significant medical issues to deal with, to give them the fantastic news.
As soon as my children were in capable hands, my husband looked deep into my teen's eyes, and promised her with great resolve that he would dance at her wedding. Then we drove to the emergency room in Iowa City University of Iowa Medical Center Hospital, which has a neurosurgery unit and miraculously, a surgical otolaryngologist who specializes in the removal of acoustic neuromas, the kind of brain tumor my husband had.
Learn More About Acoustic Neuromas
- Acoustic neuroma - MayoClinic.com
Acoustic neuroma — Comprehensive overview covers symptoms, causes, treatment of this usually noncancerous brain tumor.
- National Institute of Neurological Disorders and Stroke (NINDS)
- Acoustic Neuroma Association
Acoustic neuroma member organization provides about the rare benign brain tumor and information about treatment providers and support groups for patients and their caregivers.
But on this first day, the only information we had was word from our family physician that yes, my husband indeed had a brain tumor. In the emergency room we were asked if my husband had an MRI, and we said yes. His doctor had ordered the MRI at the hospital in Davenport. The small regional hospital was nothing compared to this multi-storied university research hospital, though, and with thousands of doctors, nursing staff, and supporting medical staff, the university hospital seemed unable to get the actual MRI images to their hospital. He could not receive a second MRI less than 8 hours before the first one, so I drove back to the first hospital and couriered the digital image myself to the neurosurgical unit where he was being kept under observation.
Waiting for Neurosurgery
Waiting for neurosurgery was hardest when we didn't have any information. My in-laws caught the first red-eye flight they could make to be with our family so I could be at the hospital with my husband. My 14-year old daughter and 5 year old son continued to attend school. We shared what information we could from the hospital, but spent hours waiting for doctors to make their rounds and review the information they had received while they monitored my husband's condition.
We spent 3 nail-biting, nerve wracking days waiting for a more specific diagnosis. I spoke with my husband about financial preparations we had made together earlier just a year ago, regarding life insurance policies and contingency plans in case the unthinkable happened, and he didn't survive the operation. We had absolutely no information to go on, so this didn't seem unreasonable for us. I spent my time divided between my husband who was being kept under observation at the neurology unit, and tending my young children who ranged from being emotionally traumatized (my teen) to being mostly unaware of what had taken daddy away from them. I wrestled with thoughts of becoming a widow at age 39 with three young children under the age of 5 and a teen who would soon be attending college, and other unpleasant and difficult-to-imagine scenarios that would have never entered my mind just days before.
We had just purchased and moved into our ranch-home built in 1968 just two months earlier, and we still had boxes and boxes of unpacked belongings in our basement. We were in the middle of remodeling our upstairs bathroom and luckily, had already finished replacing the flooring, but still needed to complete the painting. My daughter was attending a new school (again), and we were once again trying to establish friendships in a new neighborhood and community. We had a really underdeveloped support network for a medical event of this magnitude to be occurring at this time.
With all of these crazy and difficult scenarios facing us, the thing that unsettled us most directly during the week before surgery was the way this life event was affecting our ability to support our eldest daughter's performance in a local community theater production of the Wizard of Oz. My daughter had landed a coveted part and was playing the wicked witch of the west. She didn't have an understudy and her last three performances were the weekend before my husband's surgery, which was scheduled on Thursday, after my husband consulted with a prominent doctor of otolaryngology. The ear, nose, throat surgeon was a specialist in the removal of acoustic neuromas, also called a vestibular schwannoma.
My husband spent from Tuesday until Friday confined to a bed, where he was told that he could not leave his room, or even his bed, unless he needed to use the restroom. Otherwise he was to stay in bed until further notice. Finally, on Thursday afternoon, my husband was wheeled across the hospital to the office of an ear, nose, throat specialist, where he received a battery of hearing tests and some answers to some of our questions.
Do You Know Someone Who Has Been Diagnosed With a Brain Tumor?
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