The 33-year-old Michigan native and marathoner spent her days running around after her toddler and working out. But when she was 25 weeks along, a strange pain crept into her shoulder. At first, she didn’t think much of it, thinking she’d pinched a nerve at the gym. Aimee Garrison was having a great pregnancy.
“It had bothered me before,” she says, “but I blew it off as weights.”
The next week it got worse, to the point that she couldn’t put on mascara without her arm and back aching — only on the right side of her body. Since she’s right-handed, it made life extra difficult.
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She went to her ob-gyn, who sent her to a doctor who specializes in treating runners. He told her she had a pinched nerve and gave her stretches to practice, but no medication so as not to impact the 26-week-old fetus. But the stretches failed to help, and the pain was rapidly increasing. A visit to a chiropractor proved futile; massage did nothing. Even Tylenol, which is generally considered safe during pregnancy, didn’t make a dent. It got so bad that she couldn’t sleep for two weeks straight.
“I was crying through the night and screaming,” she remembers. “I have a high tolerance for pain but this was super intense.” Walking brought some relief, so she spent the nights pacing.
Finally, she couldn’t take it anymore; she had an anxiety attack and her husband rushed her to the emergency room. At the hospital, doctors administered a shot to help with the pain and discharged her, but she went back the next morning still in agony. Her whole right shoulder blade and neck endured constant shooting stabs.
“It was so bad I thought, this can’t be a pinched nerve, it has to be something else,” she recalls.
Back at the hospital, a young doctor suggested she get an MRI to see what was really going on. But MRIs require ingesting a contrast agent — a liquid that makes the MRI image show more prominently — and during pregnancy, the use of contrast agents is discouraged because they cross the placenta and their long-term consequences on the fetus are unknown.
By then, however, Garrison was rock-bottom desperate for answers.
“I had to sign my life away saying they weren’t responsible for the baby,” she says, choking up. “I cared more about my baby than myself, but I was like, do whatever you have to do. I felt like a horrible mom.” They admitted her to the hospital, and she screamed during the MRI because it hurt so much to lie flat on her back.
The next morning, she was startled by a whole team of doctors pouring into her room. “Why are there all these people here?” she asked.
One of the doctors dropped the bomb: “It looks like there’s a tumor in your spinal cord.”
Immediately Garrison burst out crying. “Is It cancer?” she asked. “Did it spread through my body?”
“We don’t know much about it yet,” the doctor told her. He said she needed to transfer to another, bigger hospital — the University of Michigan Health System — to be treated by a neurosurgeon.
In a total blur, Garrison followed their advice and underwent yet another MRI before meeting with the neurosurgeons to discuss her options.
The tricky part was that the doctors couldn’t be 100% of her diagnosis unless they operated and removed a tissue sample for biopsy, but surgery would threaten the fetus. But they suspected that she had a type of very rare benign and slow-growing tumor called an ependymoma.
It’s typically found in the brains of young kids, while in adults it usually presents in the spinal cord, like in Garrison’s case. Hers may have been growing since she was a child. As it grows, it has the potential to affect nerves, make a patient lose control over her bowels, and eventually render her unable to walk. Garrison could still feel all sensations in her hand and arm, but the tumor needed to come out right away.
“They started prepping to take the baby out at 28 weeks,” she says. “Nobody wants that to happen but you’re also scared for your own life.”
But then a young neurosurgeon named Dr. Daniel Orringer stepped in and stopped the process. He told Garrison he thought the tumor was growing slowly enough that they could wait to remove it until the baby was full term — another 10 weeks. Until then, they would manage her pain as best they could.
In his five years in practice, he’d seen about 10 patients like her and was confident enough about the diagnosis to suggest waiting.
“It was a little bit of leap of faith to say yeah, it’s probably a low-grade tumor, we can probably sit and wait and hope things will be okay,” Orringer says. “That was the hardest thing to do as a doctor — to know when not to operate as well as to know when and how to operate.”
For her baby’s sake, Garrison took the risk. To alleviate the pain, they gave her a Fentanyl patch (the same opioid that Prince overdosed on) — another calculated risk during pregnancy. For two months, she felt like a zombie, but she made it full term; her baby was born perfectly healthy via C-section — with no drug withdrawal — last Dec. 22.
“It was a miracle,” Garrison says. “We are so lucky. No one really knew how she would be.”
About two weeks later, she returned to the hospital for an even bigger operation — the tumor removal. She was terrified; what if she didn’t wake up? What if she woke up paralyzed? After 20 hours of surgery, split into two operations due to a mini-scare halfway through, Garrison woke.
“Of course I felt like s–t, but they said, ‘You’re doing great, you can move your toes!'” she remembers. “I was definitely happy and relieved.”
Garrison stayed in the hospital a full week after the surgery. Doctors hailed her results as the best possible outcome. Before she left for a rehab facility for three weeks, she managed to take a few steps.
“I was so happy I could put shoes on and walk, I cried,” she says. “And it made a huge difference knowing my baby was safe.”
It was hard to be away from her newborn and toddler, but she practiced physical and occupational therapy exercises every day until she was able to return home. Thanks to her and her husband’s parents and a nanny, the family had plenty of help, but the transition was more challenging than she expected.
“I couldn’t do anything,” she says. “I felt like I was letting everyone down. The emotional part really kicked in.” Talking to a therapist helped, and slowly she was able to contribute more.
Today, five months post-surgery, she’s feeling pretty good. Her latest MRI scan came back pristine. She’s off most medication, able to take care of her kids, go shopping, go out to dinner. She’s even started running again — slowly — and taking spin classes.
The pain in her right shoulder and arm persists, but it’s manageable, and she’s crossing her fingers for progressive improvement. Doctors told her it could take up to two years for her nerves to regenerate. Keeping up with every exercise and treatment isn’t easy.
“When you’re pregnant, you know there’s an end,” she says. “With this, I don’t know if there’s an end. I might feel the way I do forever. But it could have gone worse ways.”