How neurosurgery helped Crystal get to the top of Mt. Whitney
From Surgeries to Switchbacks
From the top of Mount Whitney, the highest peak in the continental United States, Crystal Gail Welcome looked down and considered what it took for her to get there.
She thought, “Here's a reminder of all the crap I've been through, and here I am at the summit.” Using her difficult climb to represent her health care journey, she remarked, “I look at all these switchbacks, look at all these surgeries. And here I am now.”
The day before, she’d written in her journal that she “wasn’t supposed to be here… on this trail or anywhere outdoors.” Crystal felt “scared and thankful” about what lay ahead, and that even if she didn’t make it to the top, she’d already accomplished something big. “I’ve hiked places most folks would never see or go,” she wrote. The entry ends with Crystal’s characteristic resolve: “Since no one was expecting me anyway, I might as well give it my all.”
Crystal Gail Welcome at the summit of Mt. Whitney in 2021
Crystal Gail Welcome at the summit of Mt. Whitney in 2021
The climb to the peak famously includes 99 switchbacks – challenging, rocky zigzag sections of trail that rise over 1,700 feet and can seem endless. It’s a fitting metaphor for Crystal’s path – by her count, she’s undergone more than 15 cranial surgeries, including the procedure performed at Emory Healthcare that implanted a neuromodulator in her scalp and has helped her find her way back to an active, happy life.
“I look at all these switchbacks, look at all these surgeries. And here I am now.”
A Life-Changing Diagnosis
Athleticism isn’t new for Crystal. “In high school, my dad noticed I was a fast runner,” Crystal said. “He was our school janitor, and would say, ‘Why don’t you race the other kids?’ – and so I would race during recess and would always win.” Eventually, Crystal started cross-country running, a sport where runners race outdoors in natural terrain. But several years later, she started developing headaches and problems with her vision. She couldn’t run any longer because she wasn’t feeling well, and she gained weight and became inactive because of the pain.
Crystal’s symptoms worsened. “I went to a regular eye doctor and asked for a new prescription,” she recalls. “And they said no – in fact, you’re going to the ER.” A neuro-ophthalmologist found that her optic nerves were swelling and relieved some pressure with a spinal tap. “And a few days later, I lost all vision,” Crystal said. Just a few weeks after making an appointment for a glasses prescription, Crystal had her first of many brain shunt surgeries.
Eventually, Crystal was diagnosed with a rare condition called pseudotumor cerebri, which literally means “fake brain tumor.” This disorder occurs when the pressure inside a person’s skull is too high, but there isn’t an obvious reason. These symptoms – headache and blurred vision – are also seen with large brain tumors, but scans like Crystal’s are normal. Often, pseudotumor cerebri is treated with a shunt like Crystal received.
After her first shunt surgery, Crystal felt sick and became depressed. “And then the shunt malfunctioned, so I had to get another – and that really started my life of shunts,” she said, going on to describe a pattern of surgeries, health problems, and frustration that continued for many years.
“Each doctor I met would tell me, ‘You need to change your expectations. You’re not going to be able to run; you’re going to be on medication,’” Crystal said. “Give up on your dreams, essentially,” she translated. Even after one surgeon changed the placement of her shunt from her head to her back, the pain continued – but now in Crystal’s back and head.
Crystal had many surgeries before arriving at Emory Healthcare. Photo: Crystal Gail Welcome
Crystal had many surgeries before arriving at Emory Healthcare. Photo: Crystal Gail Welcome
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Crystal during a hike.
Crystal during a hike.
Mountain range at sunrise. Photo credit: Crystal Gail Welcome
Mountain range at sunrise. Photo credit: Crystal Gail Welcome
Rerouting Chronic Pain
In 2013, Crystal moved to Georgia. She was still struggling with headaches and sickness every time she stood and became determined to get her shunt removed. So, she went to Emory University Hospital’s emergency room – where she first met Nick Boulis, MD, who she calls "Dr. B" and describes as “the best dude ever.”
Boulis is a professor of neurosurgery and neuroscience at Emory, specializing in pain neurosurgery. He became inspired by neuroscience while an undergraduate at Yale University – in his words, his obsession with the brain as “a substrate of the human identity” and the “organ that underlies human experience” – and graduated from Harvard University’s medical school. “I really sort of hit on the fact that I wanted to do both research and treat patients because of that kind of creativity piece – of trying to solve problems and the direct human interaction,” he said, explaining his path towards becoming a neurosurgeon. “I think the human nervous system is amazing – I want to study it. I want the intense human interaction of being a doctor, and I discovered I really like procedures – so that led me to want to be a surgeon, and naturally, a neurosurgeon.”
Boulis’s work involves the implementation of electrodes for deep brain stimulation – or DBS – and a variety of approaches to address human pain. He explained, “In addition to treating patients with peripheral nerve problems, which is really about repair of the nervous system, we use deep brain stimulation for Parkinson’s disease, and I’m very devoted to working on ALS.” These types of conditions are categorized as “functional neurosurgery,” or chronic neurological disorders that affect a person’s day-to-day life.
Learn more about the Emory Brain Health Center.
“To control the flow of information, you can either blow the bridge or reroute things.”
“Now, Crystal Welcome is a particularly challenging case,” Boulis said. Typically, he explained, neurosurgeons don’t treat headaches – instead, they treat tumors and other structural issues that cause migraines and other cranio-facial pain, any pain that occurs above the neck, like Crystal’s chronic headaches and vision issues. In the cases that come to Boulis, he explains, “In functional neurosurgery, we try to understand the pathway – what the neuroanatomy is of pain. And then we try to interrupt the formation of pain as an experience of the brain.”
Treatments for chronic pain take two broad forms to interrupt the message the brain sends that allows pain to enter consciousness. “We can either interrupt that message or try to jam the message,” he said. “To control the flow of information, you can either blow the bridge or reroute things.”
Traditionally, the devices used for treatment relied entirely on the first option, destroying the pathway. “We don’t like destroying parts of the nervous system,” Boulis said. “Any time you’re destroying tissue, if that destruction goes beyond the target, you can have irreversible side effects that are pretty profound.” Many times, he explained, blocking the pathway can also create new pain that is irreversible and not adjustable. “So, the paradigm in functional neurosurgery, in general, has moved away from destroying pathways and towards placing electrodes that can create stimulation that jams the signal going through the target areas. This kind of approach is used in deep brain stimulation.” Predominantly, DBS is used for movement disorders, like Parkinson’s disease, but Boulis notes that it can also be used for pain – like Crystal’s.
Nick Boulis, MD pictured in an OR
Nick Boulis, MD pictured in an OR
Beyond the Standard Treatment
In the neuromodulation industry, companies have created devices that treat pain in the body from the neck down, Boulis explained. However, none of those devices are designed specifically for pain in the head. He continued, “So that brings us to Crystal – and to my passion for trying to fill that unmet medical need.”
Boulis has pioneered neuromodulation for cranio-facial pain, developing an off-label use for existing spinal cord stimulation devices. So, when Crystal arrived looking for a new solution to her continued symptoms – and having already tried a variety of unsuccessful alternative and medical therapies, ranging from medication and acupuncture to surgery – he suggested testing her reaction to a neuromodulator.
Although an implant like Crystal’s might not work for every patient with severe pain, there is a significant benefit over the standard treatment methods: implants aren’t permanent. “When you do neuromodulation for pain, you nearly always implant a trial lead and you give patients a chance to feel what it feels like to have that lead in place,” Boulis said. “And either it helps them, or it doesn't. And if it does help them, then you move on to implanting a permanent system.” Unlike the risk of creating new pain, or the problems created by destroying brain tissue, Boulis says that this treatment is very unlikely to make a patient’s pain worse or damage their nervous system. “So, they can try it before they’re committed to it,” he explained.
When Crystal described testing the implant, she recalled thinking she looked like the cover of the movie Hellraiser.
When Crystal described testing the implant, she recalled thinking she looked like the cover of the movie Hellraiser: “I think it might have been two weeks where you just walk around with all the wires outside of your body.” (Boulis considered the placement more like Pippi Longstocking’s iconic braids, with four wires coming out of Crystal’s head around her ears like pigtails on either side.) During this trial period, Crystal drew a diagram, mapping how she felt in different situations using the neuromodulator.
The test was successful: Crystal received her implant in 2015, and just six weeks later, she ran a half-marathon in Atlanta – her first long-distance race in 19 years.
Crystal testing the neuromodulator before it was implanted. Photos: Crystal Gail Welcome
Crystal testing the neuromodulator before it was implanted. Photos: Crystal Gail Welcome
Crystal testing her neuromodulator before it was implanted.
Crystal testing her neuromodulator before it was implanted.
“We simply are doing things that aren’t happening elsewhere in the community.”
A New Journey
Crystal’s life changed after her experience with Boulis and Emory Healthcare. After years of physical limitations, she set and achieved remarkable goals.
At Big Tree National Park with a friend, Crystal decided to hike the Pacific Crest Trail, a difficult long-distance trail high in the Cascade and Sierra Nevada Mountains. She remembers her friend commenting, “You don’t even like being outside,” and replied, “Yeah, I know. But there’s something about this – I just want to go hike it.”
Photo credit: Crystal Gail Welcome
Photo credit: Crystal Gail Welcome
In April of the following year, Crystal hiked 600 miles on the PCT. “Which is something I would never have done without my neuromodulation,” she said. “And what was surprising to me was when I told Dr. B. about it, he said, ‘I totally support your decision, and here’s what you can do to stay healthy.’”
When Crystal finished her hike, she saw Boulis for another surgery. Although Crystal’s device could remove disadvantages of the traditional treatment, Boulis noted that it now added a need for “…ongoing maintenance that comes along with having a device in [her] body that wasn’t designed for doing what we’re using it for.”
Crystal running in a long distance race after her surgery. Photo credit: Crystal Gail Welcome
Crystal running in a long distance race after her surgery. Photo credit: Crystal Gail Welcome
In Crystal’s case, Boulis placed her batteries in the same area a pacemaker would go – in the upper chest, under the clavicle and above the breast – exactly where her backpack straps fell. As she prepared for another hike, this time a section of the Great Western Loop, Crystal brought her backpack to her planned surgery at Emory Healthcare, so that the placement could be adjusted, and the batteries wouldn’t wear down under the straps. Boulis experimented with alternate battery placement, shifting them first to her abdomen, where her waist belt caused problems, and then later to her flank in 2021.
New Challenges
Despite encountering and managing new issues, Crystal’s drive hasn’t faltered. She completed an adventure therapy and education graduate program in 2021 – a natural combination of her love for the outdoors and her first career as a social worker. She’s also completing a hike she calls “Footprints for Change,” working to raise awareness of the backcountry, and how rare it is for Black, women, or disabled hikers to be present on these trails. One section of this hike was the 210-mile John Muir Trail, and it’s how she found her way to the summit of Mount Whitney On August 31, 2021.
“First I got to the Forester Pass, the highest pass on the PCT,” Crystal remembered, noting that she didn’t make it this far on her first PCT hike in 2016. “By that time, I was seven days away from Mount Whitney, and I was just sitting there crying.” On the pass, Crystal made a video about how far she’d come. She reflected, “This is crazy, because every doctor I've ever had told me that I wouldn't be here… I should not be at this place where I'm at… This is not where I'm meant to be.”
Unlike other hikers, Crystal has to consider her neuromodulator during her hikes in several ways. She must think about charging – sometimes mailing her charger to towns ahead of her on the trail (and hoping they’re open when she reaches them) – or asking strangers occasionally for access to electricity. In addition to the extra weight she carries, Crystal can’t hike in a group; her pace is slower because of her device; she makes more stops, and every time she changes the neuromodulator’s settings, she needs to let her body adjust.
A week after reaching Forester Pass, Crystal left her campsite late at night, bringing only water to avoid carrying extra weight up the 99 switchbacks the climb is famous for. She reached the summit in the dark and waited with a small group – watching the sunrise from the peak.
Crystal at the start of the PCT.
Crystal at the start of the PCT.
Photo: Crystal Gail Welcome
Photo: Crystal Gail Welcome
To the Limit
“We simply are doing things that aren’t happening elsewhere in the community. And we’re happy to take on a challenge,” Boulis said, commenting on Emory Healthcare’s drive to innovate – and mirroring his patient’s commitment to expanding her own limits.
A big part of Crystal’s motivation to tackle extraordinary hikes and push her body beyond what the average brain-surgery patient might pursue comes from her years of fighting against her body. “With pseudotumor cerebri, your body thinks and acts like you have a brain tumor, but you don’t have one,” she said. “So, your body is essentially attacking itself – and so your body starts to not listen to you, and your body starts to say there’s something wrong with you.” While she hikes, though, she has control. “It’s a peaceful control, so there’s no chaos coming at you. I get to control how fast; I get to control the foods that I eat. If I want to stop and sit and lay in the middle of the ground, no one’s going to harass me.”
The next stage of Crystal’s hike is the southern section of the Arizona Trail, which is 400 miles long. After that, she’ll hike the southern section of the PCT, which was closed this year because of fire. Skipping over the John Muir Trail section, which she completed last summer, Crystal will head north to complete the PCT, ending up on the Canadian border and then making her way to the Pacific Northwest Trail.
After completing these trails, Crystal will have hiked 4,860 miles – an intense physical and mental achievement for an individual without a complex medical condition. But for Crystal, nature is soothing and calming, and “it's like the best medicine, just being out there. And I love that.”
About the Emory Brain Health Center
The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine and transforms patient-centered care for brain and spinal cord conditions through research and discovery.
Bringing these specialties together allows more than 400 researchers and clinicians from different areas to collaborate to predict, prevent, treat or cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program and Veterans Program.
Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st century challenges.
Learn more about comprehensive, diagnostic and innovative treatment options at the Emory Brain Health Center.
Mt. Whitney. Photo: Crystal Welcome
Mt. Whitney. Photo: Crystal Welcome
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