How Jacquline survived Chiari malformation

On May 14, 2010, Jacquline Adams, who goes by the stage name Iman Heartandsoul, abruptly woke up from her sleep and began to shake uncontrollably. She felt as if she was losing control of her body, and when she got up, she knew she wasn’t her normal self.

After numerous hospital visits, doctors couldn’t settle on a diagnosis and Jacquline started losing hope. That’s until she came across “Zipperheads,” a Facebook page about Chiari malformation, a condition in which the cerebellum, or the part of the brain at the back of the skull that controls balance, is too small or deformed, which puts pressure on the brain.

Members of the Facebook page shared similar symptoms to the ones Jacquline was experiencing, including headaches, pressure in the head, ringing in the ears, lack of sleep and depression. They advised her to see Dr. Rob G. Parrish, a neurosurgeon at Houston Methodist Hospital.

Chiari malformation MRI
This MRI image shows a Chiari malformation. Image via Wikipedia.

After reviewing a previous MRI, Dr. Parrish diagnosed Jacquline with Chiari malformation. Jacquline recalls Dr. Parrish saying he was stunned that she was still walking considering how advanced her condition was. Soon after her diagnosis, Dr. Parrish performed surgical decompression that resulted in the removal of two inches of her skull and two bones from her neck to make room for her brain. While the surgery is not a cure, in some cases it halts or stops the progression of the disease.

“I decided after my surgery that I would be a fighter, a survivor, and I was determined to bring some well-needed attention to an unknown illness,” Jacquline said. “The more attention Chiari gets, hopefully Chiarians will not have to search and suffer as long as I did just to get diagnosed and treated.”

As a singer, Jacquline knew she wanted to use her talent to financially help parents of children with Chiari. After her surgery, Jacquline recorded and released her own CD, “Determination,” where all proceeds went to helping these families in need.

She also founded a nonprofit, Iman’s Zipperhead Hearts for Chiari, and started an annual benefit concert and fundraiser, An Evening with Iman and Friends. The fundraiser was designed to raise awareness and assist Chiari patients financially, and has received a proclamation from the office of Mayor Annise Parker that declared Saturday, May 9, 2015 as “An Evening with Iman and Friends Day.”

“I have had my ups and downs, my good days, my bad days, but with the support of my husband, children, family and friends, I got better and stronger – mentally, physically, and emotionally,” Jacquline said.

 

Chiari malformation was earlier estimated to affect nearly 1 in every 1,000 people. With the advancement of technology, experts now believe that Chiari is more common than previously thought. To learn more about Chiari malformation, visit this resource page.