In June 2017, Michigan doctor Jennifer De Longpre published a report in the New England Journal of Medicine detailing a highly peculiar case she had come across in 2016: a then 26-year-old man with a brain cyst so big that it took up half of his skull and had started to cause neurological problems, including seizures.
What the patient, Tyler Leggett, had was an abnormally large arachnoid cyst. These cysts are sacs of cells that fill up with cerebrospinal fluid, and they’re named after the arachnoid membrane where they’re found, one of the three layers of cushion that surround and protect the brain and spinal cord (the fibers that make up the arachnoid sort of look like a spider web, hence the name). Though there’s often no clear cause for them, most cases are thought to be congenital, meaning they’re there from birth, and research is ongoing into the genetic risk factors that make people more likely to have them.
Arachnoid cysts usually stay small and are benign, meaning that they won’t become cancerous and spread elsewhere in the body. Most of the time, doctors say, they don’t seem to cause noticeable health problems, as the malleable brain can adjust to the added pressure within the skull. In Leggett’s case, the cyst continued to swell with fluid, crowding out the brain to the point of harming him.
At the time, doctors treated Leggett by placing an internal shunt inside his brain to drain out as much fluid as they could and gave him medication for his symptoms. But there was nothing they could safely do about the cyst itself—it was something that he would need to live with, with the shunt serving as a permanent drainage system, the extra fluid flowing into his stomach in order to keep his cranial pressure stable.
Gizmodo wrote about this case soon after De Longpre’s report was published. Recently, Leggett reached out to us to talk about his condition, his experiences post-diagnosis, and the community of people he’s relied on ever since. The following conversation has been lightly edited and condensed for clarity.
Ed Cara, Gizmodo: What went through your mind when doctors told you that you had this large brain cyst?
Tyler Leggett: Honestly, it was disorienting at first, because I had just had a seizure. But afterward, I felt vindicated. Everything just fell into place, and I actually felt relief, knowing that I wasn’t crazy, that there really was something extremely wrong with me.
Gizmodo: Before your seizure at 27, you had and continue to experience a variety of symptoms that you’re now sure are connected to the cyst, like chronic vomiting, trouble with balance to the point of falling, and chronic pain. Why do you think it took so long for doctors to diagnose you?
Leggett: Well, they never had a reason to do a CT or an MRI brain scan. And it does make sense, because the constant falling or pain issues might not be seen as neurological. It was only after the seizure that I started to have neurological symptoms like migraines or blurry vision. But ever since I was a little kid, doctors and people around me would say that I had flat feet, or that I’m in pain because of boxing classes, etc. People would write off my problems and never look deeper, or ask why this kid is always going to the ER.
Gizmodo: How has life been for you since the diagnosis in 2016?
Leggett: It’s a daily challenge, because it’s been extremely difficult for me to go back to work. I’ve had eight brain surgeries over the course of four years [Editor’s note: Most of these surgeries have been to replace or adjust his shunt]. And it feels like I’m trying to get this puzzle solved before I can actually pick up my life and keep going.
Really, I felt like the story was unfinished. Reading through the report and the Gizmodo article, it just felt like the ending was, “Oh, well, now he’s had surgery, and that’s that. He’s fine and living his life.” It has been an immense struggle through the initial diagnosis and the seven other surgeries, up to the point where I do feel a lot more recovered now.
Gizmodo: You now live with a shunt permanently implanted in your skull. How has that experience been for you?
Leggett: Although nowhere near the severity of having something like an aneurism, living with a shunt is like having a ticking time bomb in your head, never knowing when, not if, it will fail.
You’re never really sure if any increasing symptoms are caused by the cyst, a shunt malfunction, or over/under drainage, where the settings need to be changed. And since the symptoms of all four things present the same, diagnosing the issue is time consuming.
Like anything foreign, the body treats it as an outsider, making the risk of infection at any given time much higher. Unlike most procedures where this worry dissipates over time, this factor is a constant presence for us. The shunt can often get clogged and the tubing leading from the brain to the stomach can get kinked.
When the settings are correct, meaning no over or under drainage, you don’t even think about it after a while. It just becomes a part of you. The only time you think about it is if you’re having a procedure where you have to be careful about the tubing going from the brain to the stomach. Otherwise, it’s mostly physical and not mental, with the looming doom of impeding shunt failure always present in the back of your mind.
Gizmodo: You’ve become part of an online community of fellow arachnoid cyst sufferers. How has that been for you?
Leggett: It’s reassuring to know that you’re not alone, that many other people are out there with these same symptoms of migraines, double or blurry vision, dizziness, nausea, and even some of the more extreme ones like mine, where people are falling and they’re having balance issues or muscle weakness.
And the way that I actually found the doctor at Yale who installed my fancy new shunt was through the Facebook groups. So it’s been a very, very good resource for people like me to have, to know which doctors other people trust to help them.
Gizmodo: What do you most want people to understand about your experience?
Leggett: I want doctors to realize that they shouldn’t underestimate this condition. I and other people with this problem that I’ve spoken to have said that neurosurgeons will mostly pass it off as this little benign thing that doesn’t really have any effect on their body, when it’s not true. When you go through this experience and listen to other people, you realize that the vast majority of the community do experience symptoms. So I just want doctors to listen, and don’t be so dismissive of their patients.
And what I would like to tell patients is to take control of your care. You know, don’t be complacent. Try to find a doctor who’s going to be an advocate for you and understands that you’re dealing with this issue and will try to get to the bottom of it with you. A lot of patients in my position, they just kind of give up. They feel like the doctors aren’t going to do anything. And they just learn how to live with it. But there are more options out there now, including specialists other than neurosurgeons. So be your own advocate, and be strong, and don’t give up.