A woman who once led an active life as a violinist has had skull surgery after experiencing a dramatic decline in mobility over just three years, leaving her paralyzed from the neck down.
Amy Wang-Hiller, who has Ehlers-Danlos syndrome (EDS)—a rare condition that impacts connective tissue—saw her upper spine ligaments loosen significantly in 2021, causing abnormal spinal movement.
Now 33, Amy lives in Denton, Texas, though she hails from China.
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Her first sign of trouble appeared when she noticed her right hand becoming weak.
Today, she is “unable to activate movement from the neck down and is classified as a C1 motor complete quadriplegic.”
Earlier this year, in February, Amy started a GoFundMe campaign aiming to raise $22,000 (£17,000) for surgery to stabilize her spine and prevent her quadriplegia from worsening.
Among her other symptoms are continuous ringing in her ears, persistent siren-like noises, and intense headaches.
“The doctor said the surgery was a great success,” Amy, who underwent the procedure in March, shared with Need To Know.
“There’s been a slight setback in muscle tone and movement due to post-operative inflammation,”
She added.“But over the next few months, I’m hopeful my index finger and thumb will return to baseline, and I’ll be cleared to begin physical therapy.”
She also noted some positive improvements, saying, “I haven’t experienced debilitating vertigo, my vision is now clear, and the ringing in my ears, which has been constant for the past three years, is finally gone.
The siren-like noise has completely disappeared, which is such a relief. My world feels much quieter now. And the severe head pain I used to have has vanished.”
Amy’s journey began in early 2021 when she first observed a weakening in her right hand. By the end of that year, she had experienced sudden and significant losses in both movement and sensation, eventually affecting her entire body.
In late 2022, she suffered a loss of diaphragm function, making breathing difficult.
“It feels like I’m constantly drowning,” Amy explained. “I have to take fast, shallow breaths, and slowing down my exhale is the only way I can manage it. But I was getting more and more exhausted. It’s terrifying.”
In December, she began using a ventilator to help her breathe, although she continues to struggle with coughing and has weakness on the right side of her face, which affects her ability to chew and swallow, leaving her at risk of choking.
Originally, her surgery was planned for May, but it had to be brought forward after her brain stem and spinal cord began swelling rapidly—before her GoFundMe goal was even fully met.
“I’m hoping this surgery will stop the progression of the disease and compression and possibly bring back some functions to improve my independence,” Amy shared.
“My memory of the ICU is hazy because I was on heavy pain medication and intubated, but I just remember feeling so grateful to have made it through the surgery.”
She added, “I feel so validated now. I wasn’t imagining my symptoms, though some doctors dismissed my sudden paralysis as me being ‘too emotional’ or not trying hard enough.
The surgery showed the extent of the damage to my brain stem and spinal cord. That’s why I’m so thankful to the surgeon who believed me.”
Despite her condition, Amy continues to pursue her passion for the violin, playing as much as she can with the movement she still has.
“I’m incredibly grateful to everyone who helped me get the surgery done. Although this is just the first step in my recovery, it’s the most important one for any potential healing.
I’ll keep working hard in my rehabilitation and continue advocating for disability and patient rights so others don’t face delays in diagnosis and treatment like I did.”
Amy looks forward to one day giving back through her music. “I hope to make more music in the future,” she said.
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