Doctors told me I was faking my pain… until tests revealed my skull was crushing my brain
Ciera Buzzell had lived with debilitating headaches for 20 years, all the while begging doctors to take her pain seriously, until she was diagnosed with a deadly connective tissue disorder.
Her migraines worsened over time and her randomly dislocating joints and constant pain while running forced her to quit the Marine Corps and, later, her job. For years, doctors chalked her chronic pain up to stress, depression and PTSD.
She said: ‘Every single time the doctor would say, “Are you depressed right now? Is your depression flaring up?” They blamed it all on my mental status.
‘I felt dismissed and felt like I didn’t want to live anymore. I felt like the lowest on earth because I started believing “I guess I am crazy enough to make my body do these things.”‘
Buzzell, who hails from the suburbs of Washington, DC, was diagnosed in 2022 with Ehlers-Danlos syndrome (EDS), a group of genetic connective tissue disorders that affect the body’s production or structure of collagen, the main protein that provides strength and support to skin, bones, blood vessels, tendons and internal organs.
Doctors diagnosed her after conducting a genetic test. Inheriting just one copy of the mutated gene from either parent can cause the disorder.
EDS also led to a secondary, devastating condition: Chiari malformation. In this neurological disorder, the lower part of the brain descends through the base of the skull into the spinal canal, obstructing the flow of cerebrospinal fluid. This blockage causes severe headaches, neck pain, vision problems and a host of other debilitating symptoms.
Buzzell, 40, said: ‘It’s ironic that doctors dismissed me as being “all in my head” but ironically it is all in my head.’
Ciera Buzzell, who spent years pleading for doctors to take her debilitating headaches seriously, is pictured with her children
Soon after joining the Marine Corps in 2004, the mother of two began experiencing unusual pain while running and training.
One day, her hip popped out of place. Soon, other joins began to spontaneously dislocate. At the same time, she began clenching and grinding her teeth in her sleep.
She said: ‘In bootcamp I remember doing a flex arm hang and my shoulder dislocated but it went right back in so I didn’t know what that was at the time.
‘One day I was out for a run and my hip came out of place. I didn’t know at the time what it was because it slid right back in.
‘Then my sacroiliac joint [at the base of my spine] slipped out of place and would do that quite often. Now I know what it actually is. It was this constant battle of trying to get better.’
She left the Marine Corps in 2009. At that point, doctors referred her to a chiropractor to put her hip joint back into place.
But the pain worsened, spreading to every joint in her body. She felt continuously dismissed by doctors, who diagnosed her with fibromyalgia, a chronic condition causing widespread body pain, fatigue, sleep problems and cognitive issues
Her symptoms continued to worsen.
Shortly after enlisting in the Marine Corps in 2004, the mother of two started feeling abnormal pain during runs and training exercises. One day, her hip suddenly dislocated. This was quickly followed by other joints spontaneously slipping out of place
After leaving the Marine Corps in 2009, doctors sent Buzzell to a chiropractor to realign her hip. Instead of improving, her pain intensified and spread to every joint
She was regularly losing her vision because of the direct nerve compression, had to wear a neck brace to keep her stable and a device in her jaw to allow her to eat.
She said: ‘These mind crushing headaches or migraines meant I couldn’t function to save my life. I couldn’t see at times and I was pretty bedbound at times.
‘The eye issues started becoming so severe and the falling and the fainting was too much to continue working.’
After extensive testing, Ciera was finally diagnosed with EDS in August 2022, a moment of grim relief.
Now a single parent, she describes being heartbroken that she often struggles to even get out of bed to take her two children to school. She lives in fear of rapidly progressing paralysis as the condition worsens.
This relentless decline forced her to make a devastating choice: in 2023, she had to leave her career as an intensive care unit dietitian.
Some of the damage wrought by her EDS has been permanent, including her bladder issues.
As her condition worsens, she is hoping to undergo a major surgical procedure that could prevent paralysis related to EDS.
Her condition continued to deteriorate, leading to regular vision loss from nerve compression, reliance on a neck brace for stability and the need for a jaw device to eat
The surgery would involve fusing her skull to her spine, using bone grafts and reinforcing the area with metal rods and screws to permanently stabilize the structure.
Her brother has set up a GoFundMe page to help raise $70,000 for surgery and hospital costs to help stabilize Buzell’s spine that could save her from permanent paralysis, quadriplegia and loss of bladder and bowel control.
She said: ‘As a mom with young kids it would be heartbreaking to completely lose my ability to move. It’s just going to get worse and worse. We have to get in before for instance, I lose total bowel function or I become paralyzed in an area, which could happen any day now.
‘I don’t want to live like this forever. I have kids that I have to raise. If there’s something out there that would alleviate even 10 percent of these symptoms then I will take it. I already feel like the inside of me has died and the only thing keeping me alive are those children.’
