In playing the hand she was dealt, Aimee Osgood is winning the round by staying active, finding the funny, and encouraging others through her wise insight. Her patients and her family get to see what happens when you truly make the best of each day.

When Playing the Hand She’s Dealt,
Aimee Osgood Deals With It

By Ellen Fortini

Early one morning in November 2010, Aimee Osgood of Port Huron, Michigan went to get her children up for school when she slipped on her bedroom floor. As she landed, a screw on her bedframe sliced her arm wide open. She had been experiencing imbalance, but it was the severity of the cut that gave her pause and made her realize something bigger may be going on. As she recalls, nothing had caused her to fall – no slippery socks or discarded toys. She just fell.

“I was getting vertigo and a lot of falling down,” Aimee says. “I had no idea what was going on, so I went to some doctors’ appointments and had lots of lab work.” The blood tests revealed “a whole lot of nothingness,” so she requested to see an Ear, Nose, and Throat (ENT) doctor. Aimee thought she had an ear infection, but the ENT doctor ordered a CT scan. “Then I got a phone call saying, ‘You need an MRI right now.’”

In playing the hand she was dealt, Aimee Osgood is winning the round by staying active, finding the funny, and encouraging others through her wise insight. Her patients and her family get to see what happens when you truly make the best of each day.

The MRI revealed a brain tumor. Actually, 11 brain tumors, the largest being a 3.5-centimeter acoustic neuroma, which develop on the hearing and balance nerves that lead from the inner ear to the brain. “When they did the biopsy, it tested positive for neurofibromatosis type 2 (NF2), which are tumors that gradually grow on cranial and spinal nerves your whole life,” Amy shares. “There is no cure for it.”

Though the tumors are benign, they are still life-threatening. At the time of her diagnosis, Aimee was 33, had two young daughters, and had just been accepted to nursing school. “No one in my family ever had anything like this before,” she says. “We didn’t know anything about it. My first surgery took 14-and-a-half hours and was right before nursing school. Another surgery was during nursing school and one was right after.” After a brief break, Aimee had an additional two surgeries last year. She says completing nursing school while managing the surgeries has been among her greatest successes.

The first tumor removed was the acoustic neuroma, which was pressing on the pons in her brain. It was so large, it was compressing her brain stem and impeding the cerebral spinal fluid, which had backed up into her head, causing increased intercranial pressure and resulting in papilledema, the swelling of the eyeballs and eye nerves. “It was just very painful,” she admits. “It felt like constant dry eyes and like my eyeballs were going to pop out of my head. It was pressing on my spinal cord and it can cause issues with breathing.”

So far five tumors have been removed, and six remain that are each two centimeters or larger. Two are on each trigeminal nerve and Aimee has been advised that removing them would result in more cons than pros, as she would be left with additional deficits. “For right now, we’re doing a watch and wait,” she says. “They said they can’t take out more than one at a time because they’d have to open up a bigger spot and exposing the brain to that much air is not a good thing.” Aimee travels two-and-a-half hours to the University of Michigan for her surgeries and doctors’ appointments, including neck and spinal MRIs that often last up to three hours at a time.

At the time of this interview, Aimee was preparing for a three-hour brain and spinal MRI the following day. “I have a bad boy tangled up in my venous structure on the occipital lobe, causing massive migraines,” she tells. “They want to see if it is ready to be taken out.”

In the past, tumor removal has relieved some of her pain. “The headaches tend to go away for a while, and my balance gets better for a little while,” she acknowledges. “But they said that because I’ve had [the tumors] since I was born, my body compensated well because it was something that gradually grew over time and my other balance nerve was able to take over.”

Additionally, the last two tumors removed resulted in Aimee gaining almost six centimeters of space in her head. “Back to where [my brain] should have been in the first place,” she notes. She’s hoping the space stays empty and nothing else grows there.

“The tumors typically grow a millimeter a year,” Aimee explains, adding that the 35-millimeter tumor correlated almost exactly to the predicted growth timeline, as she was nearly 34 years old at the time it was discovered. “They can grow anywhere along the nerves and in the brain,” she continues, “mostly meningiomas. They can be pretty devastating, as they can take your hearing, balance, vision, ability to talk, swallow, and walk. I have deficits on my left side; it’s weaker, and when I am tired, my family notices a bit of droopage on the left side of my face.”

In addition to her migraines, which tend to last for days, Aimee is deaf in her left ear with constant tinnitus, word retrieval problems, and balance and vision issues she deals with on a daily basis. She says being deaf and working in a busy hospital has been one of her biggest challenges.

Aimee married her husband Richard Osgood in 2018, eight years after her initial diagnosis. “Sometimes it pays to swipe right,” she laughs, referencing their connection through an online dating app. “He is supportive, and he’s had back surgeries and spinal issues of his own, so he understands what it’s like to have pain, but nobody believes you. If I’m not feeling well, he’ll ask what I need, like an ice pack or something to drink, he’ll help me with my medicine, or recommend we take a walk.” Her daughters Brooke, 17, and Olivia, 13, stepson Camden, 14, and stepdaughter Tesla, 11, all help when Aimee needs a break or some assistance, and the kids even got to help style Aimee’s new hairdo when she decided to shave her head for her two surgeries last year.

“I let them do a mohawk,” she shares. Aimee says she was known since her school days for having long, curly hair, so cutting it was not a decision she took lightly, especially since it wasn’t required for the surgery. “[The surgeons] usually just cut a strip of hair where they need to make the incision,” she says, adding that the gel used during surgery to keep her hair in place often resulted in her long locks becoming matted and her needing assistance to wash it. So, with two surgeries on the horizon, on one side of her head in May and on the other side in October, Aimee’s sense of efficiency prevailed, as did her adventurous nature. “It was just easier for the kids to shave it into a mohawk, so I gave them the scissors and razors and told them to go for it.”

The close-knit family keeps active despite busy work and school schedules. “Yesterday was the first time in years I tried roller skating and I didn’t even fall,” Aimee says happily. “I went down the street and back. I was a little off-balance, so my arms were flying all over, and I am sure the neighbours were all laughing at me, but I was very proud that I was able to do that.” She’s also taken up biking again and does a lot of walking. “I want to stay active because as I get older, my balance is going to get worse anyway, so I try to keep moving,” she reasons.

Her active lifestyle contributes to strangers’ frequent disbelief of her diagnosis. In fact, in the early days of the pandemic, Aimee was at work when the left side of her face began to droop. Colleagues were concerned that she was exhibiting signs of a stroke, but she knew it was her facial nerves and an issue related to her upcoming surgery. The ER doctor on duty at her workplace was not familiar with her or her medical history and was convinced she was exaggerating. “He snapped his fingers in my ear and said, ‘You can’t hear this?’” His unkind assumption aside, the doctor ordered an MRI and the results prompted Aimee to be sent immediately to the University of Michigan to be seen by her regular doctor in advance of her surgery.

“A lot of people don’t believe I am deaf and have NF2 because I move,” she confides. “Most people don’t believe I have something wrong. They say I am way too active, or I don’t present like what people think of as a typical brain injury patient.”

Aimee works as a nurse at a metro Detroit-area hospital on the telemetry floor. Since the pandemic, the unit has been changed to monitor up to 40 COVID-19 patients at a time, many of whom arrive with grave symptoms from the virus, as well as others with newly acquired head injuries from falls due to weakness and oxygen-depletion brought on by the virus. As a COVID-19 nurse who has also faced her own challenges with brain illness, Aimee is often called on by colleagues to share first-hand about the challenges her patients may face.

“When I go to work, they give me a lot of the patients who have cranial and spinal issues, because sometimes they start to feel really down or like they have no hope,” she shares. “They give me those patients so I will sit and talk to them.” What she offers is comforting insight and understanding, as well as practical suggestions.  

“A lot of them say, ‘You have such a positive outlook; I never thought of it like that,’” she says. “Most people hear the diagnosis ‘You have a brain tumor,’ and they just shut down. At the very beginning, I did, too, because you hear that, and you don’t know what to think.” After 10 years of reflection, Aimee feels able to share her perspective and experiences to help others learn how to cope.

The following are some of the top tips Aimee suggests to the patients she works with:

1. Get a nightlight. If your balance is off, and your body has no idea what’s going on, you’re going to fall, so your vision will start to take over and helps with your balance.
2. Buy a hat. When you have brain surgery and they shave part of your head, they replace it with a metal plate, so on a cold, windy day, you get instant brain freeze. So I tell them, “Go hat shopping!”
3. Don’t get frustrated. A lot of times, I lose my words because I’ve had a couple surgeries right on the word-retrieval section of my brain. I always feel like the word is on the tip of my tongue, but it takes longer to remember what it is. So, I try to calm down and just give it an extra second.

Her advice isn’t just for her patients, though. Aimee’s positive attitude is thanks in part to a simple habit she encourages anyone to add to their daily routine. “I tell a lot of people to just find the funny in every day,” she says. “I always follow it up with, ‘Yes, there are days when you’re going to want to sit in a corner and throw forks at everybody, and you’re allowed to have those days, but you can’t turn it into a daily thing.’ Find the funny, or it’s going to consume you – the bad vibes or the bad moods.”

That insightfulness come from someone whose diagnosis came at a most inopportune time and used what it taught her about her own strength to propel her through nursing school. “Just because you get bad news, that doesn’t mean it’s the end,” Aimee iterates. “You can keep going and work through it. Because if not, I wouldn’t have continued with nursing school.”

Executive Director of the Brain Injury Alliance of Arizona and former high school classmate of Aimee’s, Carrie Collins-Fadell, believes Aimee is a true warrior. “Healthcare workers who understand both worlds – the demands of medicine and what it’s like to be a patient facing a diagnosis with very unknown consequences – are the angels who walk among us,” emphasizes Carrie. “As Aimee has experienced both sides of the patient/healthcare-provider dynamic, what we all can learn from her is a gift.”

Part of what keeps Aimee in fighting shape is her own recovery regimen. She says recoveries from her type of brain surgery usually last four-to-six months. “I can do it in four to six weeks though,” she admits. “My longest was eight weeks. I like to keep busy.” Her recipe for success starts with a week of “vegging” – just relaxing, not pushing herself, and taking it slow. “Then I add in a walk, and picking stuff up around the house, then folding clothes, and add to it every day. I like to keep pushing myself. Even my doctors say they can’t believe I do so much in such a short amount of time.”

Aimee comes by her independence, drive, and determination honestly. Her grandmother will turn 100 in June, and until a few months ago, she lived by herself in the same house she had lived in since 1954. Aimee says she and her family had to convince her grandmother to move into a retirement community. “She couldn’t go up and down the stairs anymore,” Aimee explains. “She fought it, too. And it’s not assisted living, it’s a retirement community so she has her own apartment. She does everything herself.”

Proving that the apple doesn’t fall far from the tree, Aimee has her own reasons to continue the family legacy of being a strong role model. “I push through it. I have young kids. I just can’t sit in a corner,” she states. “I can’t let this disease take me. I’ve still got things I want to do. I have things I have to do. I’ve got obligations. I owe it to my kids to be here for them.”

In her career as a healthcare professional, Aimee has additional reasons for persevering. “I like to get the word out about brain issues because a lot of people don’t like to talk about it,” she shares. “But a lot of research needs to be done, especially with NF, because there is no cure. My family knows that when my time comes, I’m donating my brain to research because this disease is terrible, and some people have it worse than I do.” She feels strongly that in addition to funding research for the big-name diseases, rarer illnesses and conditions also deserve attention.

Thinking of others, including future generations, is a consistent theme in Aimee’s family life and her professional world. Taking time for herself and being realistic about her needs are essential tools in helping her give back most effectively. “My grandfather always used to say, ‘Play the hand you were dealt.’ Essentially, what was given to you, the situation you are in, that’s what you’ve got to deal with, and you’ve got to find your way through it,” she says. “If you were dealt lemons for the day, you’ve got to deal with the lemons. So do something with them.”

In playing the hand she was dealt, Aimee Osgood is winning the round by staying active, finding the funny, and encouraging others through her wise insight. Her patients and her family get to see what happens when you truly make the best of each day.

“I’m still here. I can walk,” she says cheerfully. “And I can roller skate.”

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

The Brain Injury Alliance of Arizona:

• Works with Congressional Brain Injury Task Force
• Houses Arizona Brain Health Resource Center
• Hosts Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
• Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
• Facilitates Brain Health Advisory Council
• Manages statewide Neuro Info-Line: 888-500-9165