For almost 10 years, Ahwatukee musician Sharon Chen struggled with constantly misdiagnosed health problems.
Now she composes music to stand up for what she considers flaws in the healthcare system, which she believes, prolonged her suffering needlessly.
“It’s frustrating. Physically, you’re tired, mentally, emotionally. You have to fight the system,” said Sharon Chen, who was diagnosed with two brain tumors earlier this year.
The Maryland native, 52, who began playing violin when she was 4 ½, graduate from Harvard University in 1989 as an honors dual concentrator in music and East Asian languages and civilizations.
After moving to Arizona in 1998, she taught violin lessons and performed professionally for several years, until she was forced to retire in 2010 due to her medical issues.
Before her tumor diagnosis, Chen also was suffering from arthritis and severe anemia, which further complicated her career as a violinist and pianist.
Starting with slight neck pain and minor imbalance issues, the symptoms began to gradually worsen and Chen began searching for answers from local doctors.
“It went from like 2009 until March of this year – 10 years for the diagnosis,” she said.
In 2012, Chen had an MRI in which she said a tumor was clearly visible. However, she said the doctors did not catch it, and her problems continued to be misdiagnosed.
At one point, Chen said doctors assumed she was imagining these issues, although she said she never had a history of psychological problems.
“That was frustrating. You’re paying the neurologist big bucks and they’re telling you like your mind has broken down and your mind has created this condition,” she said.
Chen was also misdiagnosed with a movement disorder, and while visiting family in Switzerland, she attempted to find help there.
“They sent me to another movement disorder neurologist,” she said. “But he was like “Don’t try to search for answers, God gave you this problem.’”
She eventually turned to composing and producing music as an independent artist, as she was no longer able to play violin professionally.
This became an outlet for Chen to express her exasperation.
Through her frustration, Chen continued to keep fighting for answers, which she finally found earlier this year.
After another MRI in March, doctors finally found the tumor causing her medical issues as well as another smaller clinoid tumor on her optic nerve and carotid artery, which is currently being monitored for growth, Chen said.
The tumor, which had created the balance problems, is an acoustic neuroma, a noncancerous tumor located on her hearing and balance nerve in her inner auditory canal.
“This kind of tumor is extremely rare,” Chen said. “I don’t know if people know about, but it’s only like 1 in 100,000 people have it.”
After discussing treatment options with two different doctors, Chen said she was left with two choices: Undergo radiation to try and stop the tumor’s growth or have it removed.
“The tumor is right by the facial nerve and the hearing nerve, so the radiation could also cause facial paralysis,” she explained.
Chen chose surgery despite the risk of losing her hearing, she said. The surgery was performed a month ago and the acoustic neuroma was completely removed.
Although the larger tumor was removed, Chen said she still has a long road ahead of her. She will have to go through rehabilitation to work on her balance, and doctors will still be keeping a close watch on the other, smaller tumor.
Throughout this entire medical journey, Chen said one thing kept her going: Composing and producing music.
“If people listen to my music, they can get a sense of who I am,” she said.
“Through my pain, my music came as an expression of my voice to stand up for the injustice of the healthcare system,” Chen said on her GoFundMe.com site, where she is raising money to pay for her medical costs – which even with her medical insurance are extremely high.
Chen also said she wants to help others who are dealing with undiagnosed health problems.
Her site is: gofundme.com/f/rare-brain-tumor-awareness.