CAMDEN — Susan Ghent has already undergone six brain surgeries this year.
“I’ve been in the hospital every month, except April and May,” Ghent said.
Ghent’s frequent hospital visits have been for treatment for the side effects of Chiari malformation, a neurological disorder which Ghent was diagnosed with in 2010.
“Just like you have tonsils in your throat, you have tonsils in the back of your neck also,” Ghent said. “The back of our skulls are indented in so there’s no room for them to hang. They herniate into the brain stem. It causes a lot of neurological issues.”
Ghent has suffered for much of her life as a result of her Chiari malformation going undiagnosed. Even now, she suffers from hydrocephaly and sleep apnea.
When Ghent was first diagnosed with Chiari, her local doctor told her not to worry about it; that it was an “incidental finding,” an essentially harmless condition symptomatic of a bigger problem.
As a result, Ghent had her gull bladder removed, and underwent a hysterectomy and an appendectomy. At one point, she was misdiagnosed with multiple sclerosis.
However, her condition worsened. In 2013, Ghent began to have trouble walking, and experienced blurry vision and loss of hearing.
“My body was shutting down,” she said.
In February of 2014, she had her first brain surgery, but the problems didn’t stop there.
This year she had a shunt put in, then removed, then she had a drain put in to reduce the amount of backed up cerebrospinal fluid, and then she had a second shunt put it.
Ghent’s fight against Chiari malformation extends beyond her own diagnosis. Five of her seven children have been diagnosed with the disorder; the other two have not yet been tested.
“The best scenario would be that U of M would accept them and fix them,” Ghent said.
“The right doctor can go in and fix it,” Ghent’s husband, Tom, said.
She added, “U of M has been outstanding. I go there and they fight over who’s gonna take care of me.”
Right now, Ghent’s mission is to spread awareness about Chiari.
“The problem is: doctors don’t like learning new things,” Ghent said. “They thought it was a rare neurological disorder.”
Ghent’s aim is that people would know about Chiari and have themselves tested so that they can get the malformation corrected early.
“Not everybody is going to have to go through what I went through,” she said.