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Our Brain Tumor Experience: Diagnosed With an Acoustic Neuroma (Part 1)

I have been many things in life: a mother, a technical writer, a preschool storytime presenter, the wife of a brain tumor survivor.

My husband's brain tumor was an acoustic neuroma, also called a vestibular schwannoma. It was located behind his left ear on the nerve that controls the sense of balance.

My husband's brain tumor was an acoustic neuroma, also called a vestibular schwannoma. It was located behind his left ear on the nerve that controls the sense of balance.

Down the Rabbit Hole With a Brain Tumor Diagnosis

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.

Our journey through a brain tumor operation was like a trip down the rabbit hole.

Our journey through a brain tumor operation was like a trip down the rabbit hole.

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. He was in danger of having a stroke himself, according to the doctors, who immediately confined him to hospital bed rest.

Acoustic Neuroma Symptoms

  • Loss of balance
  • Deteriorating handwriting ability
  • Brief but searing headaches
  • Double vision
  • Hearing loss
  • Trouble sleeping

Acoustic Neuroma Diagnosis Day

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. For us, the day my husband was diagnosed with a brain tumor was just such an event.

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 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 pm, I received a telephone call from my husband that changed my life, and more importantly, his. He 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.

My husband broke the news. She and her father were crying on the front lawn as I waited for a friend from my church to come and take all of my 4 children and contacted my mother-in-law and father-in-law, who had their own significant medical issues to deal with.

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.

Learn More About Acoustic Neuromas

  • Acoustic neuroma - MayoClinic.com
    Acoustic neuroma — Comprehensive overview covers symptoms, causes, treatment of this usually noncancerous brain tumor.
  • 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 in Iowa City, 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.

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.

The level of stress for everyone was unbelievable.

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Waiting for Neurosurgery

Waiting for neurosurgery was hardest when we didn't have any information. My husband's parents 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 hadn't started high school yet, 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 1968 ranch-home 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. I know that may sound strange, but I think it was a case of zeroing in.

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.

  • Understanding the Diagnosis: Our Acoustic Neuroma St...
    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
  • Brain Tumor: Day of Surgery, Part 3
    After being diagnosed with an unusually large acoustic neuroma, a brain tumor on the auditory nerve, my husband was scheduled for a 14 hour surgery to remove the tumor. This is part three of a series.
  • Schwannoma – What is it? – Continuing Jackie’s...
    This is a mixture of fact and fiction where after years of believing that she had Ménière's disease Jackie (not her real name) has finally learned that what she has is a Schwannoma and Ménière's.

This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2012 Carolyn Augustine

Comments

VJG from Texas on October 09, 2014:

My uncle had a brain tumor removed. He said that he was feeling worse after the surgery. It turned out that the medicines that he had been prescribed were too high if a dosage and others were not agreeing with him. Once the correct medicines and dosages were determined he was doing as well as an 83 year old can do.

Susan Sisk from Georgia, USA on November 12, 2012:

Your family is in my prayers. Just read this, and want to read more that you have written about your journey.

Carolyn Augustine (author) from Iowa on February 22, 2012:

Thank you Enlydia, he is doing really well. Please keep reading as this is an installment series. It is an amazing story.

Enlydia Listener from trailer in the country on February 22, 2012:

What a difficult time it must have been for all of you...thankyou for sharing your story. How is your husband doing now?

Carolyn Augustine (author) from Iowa on February 22, 2012:

Thank you bostonbean. I did not use the resources on the acoustic neuroma site but I am aware of it. My husband is also back to work but I have been wanting to tell his story. His acoustic neuroma had been growing undetected for between 5-10 years and the experience was traumatic, but became better with excellent care and information. You'll see there's more to the story. Thank you very much for your positive thoughts and kind words.

boston bean on February 21, 2012:

My wife had very similar symptoms and it tured out to be an acoustic neuroma - a benign brain tumor. We felt overwhelmed but found the Acoustic Neuroma Association website (www.ana.org) and found a support network of other people who had similar symptoms and good advice about all of the treatment options and getting on with life. They have a forum as well as educational materials and support groups. Even people to call! My wife is now back at work as an RN and while she still has some headaches - she's back to close to her old self. It's scary - but with good support form family and friends and good information you can get through this. Good luck!

Carolyn Augustine (author) from Iowa on February 21, 2012:

Thank you Dorsi, I appreciate your positive thoughts. I hope this will help someone who has just received a diagnosis and give them the strength to get through the experience, knowing that my husband made it and recovered. Also perhaps to inform caregivers and support systems so families can reach out and help in a positive way.

Dorsi Diaz from The San Francisco Bay Area on February 20, 2012:

Thank you for sharing such a personal and traumatic part of your life. I hope things are going well and I will be following your husbands progress. God bless.

Carolyn Augustine (author) from Iowa on February 20, 2012:

Nybride, my husband is 45. Thanks for reading. This could be a lengthy series!

Thanks Jackie, it was, but it has been a learning experience too. We are feeling a bit scuffed around the edges but life is getting better.

Jackie Lynnley from the beautiful south on February 19, 2012:

I can only imagine how devastating all this was. Thanks for sharing.

Lisa Kroulik from North Dakota on February 19, 2012:

I will be looking for more of your story. Do you mind if I ask how old your husband is?

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