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Jamie Wright suffered debilitating headaches throughout college and medical school. One day during medical school, she looked at her phone and her vision went black. She instantly got a terrible headache and pain shot down her spine. Most days she’s fine, but some days she’s in the Neuro ICU. And to date, she’s had 17 brain surgeries.
In many ways, Wright, at age 34, is like most young professionals. She’s pursuing her career and is currently a medical resident at the University of Washington. She plans to use both her Ph.D. in biomedical research and her medical degree to become a neurologist, treating adults living with hydrocephalus.
But her life is also unpredictable. And that’s because just like the patients she plans to treat someday, Wright is an adult living with hydrocephalus.
Wright’s shunt-related surgeries have included shunt implantation, revisions, intracranial pressure monitoring and an endoscopic third ventriculostomy. She thinks she’s on shunt number 12 but admits to losing count.
“I joke that I’m a cyborg because I have so many adjustable parts,” she laughs. “We’ve just been changing out parts over the years.”
An Additional Diagnosis
When she was in medical school and even during the beginning of her Ph.D. program at the McGovern Medical School at the University of Texas at Houston, Wright wondered if she even needed a shunt anymore. Her MRIs were stable, her brain scans had been normal, and her last brain surgery was years ago.
Yet she suffered from chronic headaches, and they worsened, even waking her up from a sound sleep. Wright initially resisted exploratory shunt surgery since her scans were normal, but finally relented in 2015 when her neurosurgeon tapped her shunt to drain some cerebrospinal fluid (CSF) and her headache subsided.
Post-surgery, Wright learned that not only had her shunt failed and been replaced, but she also had a new diagnosis—slit ventricle syndrome. Over time her ventricles had become smaller and could no longer expand when obstructed, providing no external indication of shunt failure.
“It was actually really devastating,” Wright says. “It was like, ‘No, you do still need the shunt. And not only that, but we also no longer have any indicator of when your shunt’s failing. It’s all based on your symptoms now.’ And that was the first time that I was like ‘Oh my gosh, I’m going to have to deal with this for the rest of my life.’”
Navigating School and Residency as an Adult Living with Hydrocephalus
When Wright began her medical residency at UW, she approached the college’s disability office to discuss possible accommodations she may need for her hydrocephalus diagnosis. “They kept asking, ‘What do you need to prevent this from happening? What can we do with your schedule to keep the shunt working?’ And I said, ‘Nothing. My shunt can still fail at any moment. And there’s no way to predict it.’”
Years earlier, during her Ph.D. program, Wright’s shunt failed without any warning just a week before Christmas.
“It was funny because I’d been brushing my teeth that morning thinking, ‘I can’t wait to tell my neurosurgeon and neurologist how awesome I’m doing.’ I was so excited. And then all of a sudden, pain went down my spine. My vision went black, and I had one of the worst headaches of my life. I gave it a few hours, but finally texted my neurosurgeon, and he told me to go to the emergency room.”
By that night, she was in the Neuro ICU.
“I was in complete denial,” she says. “I thought, ‘Maybe it’s the flu.’ And here I am, my vision’s going black on and off and I can’t stand up without losing my vision and throwing up. It was awful. And I was thinking, ‘Maybe it’s not the shunt.’ Finally, around six o’clock in the morning, I went into surgery. My neurosurgeon said later that CSF shot right out. This whole part of my catheter was completely blocked.”
Hoping an Endoscopic Third Ventriculostomy Would Be a Solution
In 2016, Wright underwent surgery for an endoscopic third ventriculostomy (ETV), hoping it could replace her shunt.
“I woke up in so much pain, I thought I was dying,” she remembers. “And it was so weird because it wasn’t rational. I knew my shunt was externalized and they could open it right back up to drain the fluid. But that thought didn’t even cross my mind. Thankfully, they opened it and let it drain, and I felt better. But it also meant that I was 100% dependent on a shunt for the rest of my life.”
Wright watched as her doctors clamped off the shunt to test the ETV. Within 10 minutes, she could feel the pressure change inside her head. After a couple of hours, her vision started to go black, and she couldn’t move without tremendous pain.
“I had this realization that not only do I need this shunt, but I’m completely dependent on it,” she says. “Even after that surgery in 2015, I was like, ‘Maybe I just kind of need the shunt.’ Even then, I thought, ‘The shunt malfunctioned, it wasn’t that bad.’”
A Huge Void in Care for Adults Living With Hydrocephalus
Wright chose her residency at UW because she wants to specialize in adult neurology, much like her role model, Dr. Mike Williams, director of Adult and Transitional Hydrocephalus and CSF Disorders at UW. Prior to joining UW in 2016, Dr. Williams established adult hydrocephalus centers at Johns Hopkins Hospital and at Sinai Hospital of Baltimore.
Through her volunteer work with the Hydrocephalus Association, Wright learned that adults living with hydrocephalus often struggle to find neurosurgeons who treat adult hydrocephalus. That’s because patients must typically find a new doctor once they’ve outgrown their pediatric neurosurgeons at age 18.
“The first successful shunts were only created in the 1950s,” she says. “We’re still in the first generations of people who have lived into adulthood with hydrocephalus. And to be quite honest, a lot of neurosurgeons are more interested in spine surgery, trauma surgery or brain tumors. All neurosurgeons know how to treat shunts, but not all of them like to.”
People are aware of hydrocephalus and shunts, but Wright says it’s more complicated than that.
“It’s kind of fun telling doctors and neurosurgeons who don’t know me that I have a shunt because a lot of people think of hydrocephalus and think brain damage, dysfunction or cognitive deficits,” Wright says.
She’s pursuing adult neurology because she believes it’s important to have more doctors on the side of patients with hydrocephalus.
“I hope that one day we’ll have better technology and better treatments so that I don’t have a lifetime of surgery,” she says. “But right now, that’s what I’m looking at and that’s what I have to plan for. But I hope to be part of changing the future of hydrocephalus.”