Isabella – Chiari Malformation Patient Story
Isabella was 14 when her dizzy spells began. They quickly escalated until she was too dizzy to walk on her own. She’d close her eyes, and her mother, Melissa, would hold her shoulders and guide her. To get to her bedroom at night, she crawled up the stairs.
Then she started getting terrible, squeezing headaches brought on by any kind of strain, like coughing or laughing.
“She has this great, infectious laugh,” Melissa says. “But she couldn’t laugh.”
Isabella stopped doing most of the things she loved – cheerleading, gymnastics, attending concerts – because of the dizziness and headaches. She could no longer function normally.
“It restrained me from living to my fullest and really enjoying everything as much as I should have,” Isabella says.
Isabella’s family lived in Ohio, so she and her mother visited several hospitals in Cleveland looking for answers. An MRI scan revealed a Chiari malformation, which meant there was not enough space at the base of Isabella’s skull, and her cerebellum and brainstem were compressed as a result.
Isabella underwent cranial decompression surgery at a hospital in Cleveland several months after her headaches and dizziness began. But the surgery did not alleviate her pain. Instead, it was just the start of a two-year journey to find the expert care Isabella needed.
The Path to UPMC
“Basically, for two years she was just existing,” Melissa says of the time before Isabella came to UPMC. “She was really to the point of not functioning.”
Melissa took Isabella to doctor after doctor, and they either had no experience with Chiari malformations, or they brushed off the dizziness and headaches as nothing serious. But Melissa could see how badly her daughter was suffering, so she persisted. Finally, a family friend in the medical field reached out on Isabella’s behalf to Robert M. Friedlander, MD, chairman of the UPMC Department of Neurological Surgery. Dr. Friedlander is nationally recognized for his expertise in treating Chiari malformations.
Isabella and her mother traveled to Pittsburgh almost immediately to meet with Dr. Friedlander. After testing, he told them that Isabella’s surgery had been unsuccessful, and would need to be redone.
So, at the age of 17, Isabella prepared for her second brain surgery. Though the prospect inspired fear, Isabella’s symptoms were so bad that her reaction was just two words: “Fix me.”
Soon after their first meeting, Dr. Friedlander conducted Isabella’s second decompression surgery by removing a small section of bone from the back of her skull, exploring her brainstem with a microscope and then sewing a patch of tissue in place to enlarge the covering. This allowed more room for Isabella’s brain and eliminated the pressure on her spinal cord.
While Isabella was at UPMC for her second surgery, her family knew she was in good hands because of Dr. Friedlander’s expertise and compassion. He and his staff were in direct contact with the family throughout the process, answering any questions they had.
“The level of care was amazing,” Melissa says of their experience with UPMC’s medical team. “We just felt like they were really concerned about Isabella, which was a completely different experience from what we had before.”
Finally, after almost three years, Isabella was healed. Her mother remembers a follow-up visit to Pittsburgh when Dr. Friedlander reviewed with them the postoperative MRI scan confirming that the compression in Isabella’s brain had been relieved.
“He was so excited, like it was his own kid,” Melissa says. “It was a miracle. It really was life changing.”
Now 19, Isabella lives in Birmingham, Alabama, and just finished her freshman year at Auburn University. She went from needing special accommodations in high school to being a normal student with no headaches or dizziness holding her back.
“I wasn’t feeling well for such a long time that it became my normal. I was convinced that was the way I was going to have to live my life,” Isabella says. “After my second surgery, when I actually started to heal, I realized ‘Oh my gosh, this is normal.’”
Thanks to the expert treatment she received at UPMC, Isabella knows that healing is possible even when it seems like there is no hope, and she wants other people who are suffering to know it, too.
“I’m so healed now that it’s a different life,” Isabella says. “Just because something at the present moment is hard, it will pass. A solution can come and healing will come.”