A woman has undergone skull surgery after she went from being an active violin player to having severely limited movement from her neck down in just three years.
Amy Wang-Hiller has Ehlers-Danlos syndrome (EDS) – a rare condition that affects the body’s connective tissue.
In 2021, it caused the ligaments in her upper spine to become loose and allow too much movement.
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The 33-year-old, who lives in Denton, Texas, but is originally from China, first started to notice weakness in her right hand.
Now she is “unable to activate movement from the neck down and is classified as a C1 motor complete quadriplegic”.
In February this year, Amy launched a GoFundMe to raise $22,000 (£17,000) for surgery to stabilise her neck and halt the progression of her quadriplegia.
Some of her other symptoms include constant loud ringing in her ears, siren noises and throbbing headaches.
“The doctor said the surgery was very successful,” Amy, who had the operation in March, told Need To Know.
“There has been a slight setback in tone and movement due to the inflammation post-op.
“But over the next few months, I hope my index and thumb will return to the baseline, and I will be cleared to start the physical therapies.
“I haven’t had debilitating vertigo; my vision is now clear, and the ringing in my ear that has persisted for the last three years has now dissipated.
“I haven’t heard any loud siren whistling noise at all, which is terrific.
“My world suddenly got much quieter.
“And I don’t have that intense pain in my head anymore.”
Amy first noticed a loss of strength in her right hand in early 2021.
By the end of the same year, she had multiple sudden loss of movement and sensation.
Soon, it had spread to her entire body.
In late 2022, she lost function in her diaphragm, leaving her struggling to breathe.
She said: “It is like a constant drowning feeling.
“I have to use fast but shallow breaths.
“Slowing down my exhale became the only way to manage it, but I was becoming more and more exhausted.
“It’s really scary.”
Amy started using a ventilator in December to help her breathe more easily, but she still struggles to cough and has weakness with chewing and swallowing on the right side, meaning it’s easy for her to choke.
Her surgery was originally planned for May but it was pushed forward before her GoFundMe campaign was complete because her brain stem and spinal cord rapidly began swelling.
She said: “I’m hoping that the surgery will halt the progression of the disease/compression and maybe enable me to have some function return in the future to improve my independence.
“My memory was a bit blurry for the first few days I was in the ICU because I had a lot of pain medication in my system and was intubated.
“Still, I only remember feeling grateful that I made it through the operation.
“I feel so validated. I wasn’t just imagining my symptoms.
“Some doctors didn’t take my sudden onset of paralysis seriously.
“I was told I was ‘too emotional’ and putting in ‘submaximal effort.’“
“The truth is the complete opposite; surgery revealed extensive damage to my brain stem and spinal cord.
“That’s why I am extra grateful that I found the surgeon who actually listened.
“I almost can’t believe I’m on the other side.”
Despite her illness, Amy still uses what movement she has to continue her passion: playing the violin.
She said: “I am so thankful for everyone who helped me make the operation happen.
“Although the surgery is only the first step in the recovery journey, it is the most critical step for any healing that might take place in the future.
“I will work hard on my recovery journey, and I will continue my disability and patient advocacy to prevent delayed diagnosis and treatment for others like me.
“I hope to give back by making more music in the future.”
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