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Watching television is usually scheduled relaxation time. But on an early spring day in 2010 for Pittsburgh native and avid dancer and singer MaryMartha Ford, it was anything but normal. After a long day at her job as a resident coordinator for a local university, she was watching some of her favorite shows when her face unexpectedly started to move on its own. Then, her jaw locked and she felt her throat start to close. She assumed the worst. “I thought I was having a stroke,” she said. “But then the symptoms went away and I wasn’t really sure what happened.”
Shortly after the first incident, she started having terrible headaches. But these were not an average headache, she explains. “It was like brain freeze, like I just bit into a huge scoop of ice cream and the pain just hits you, it was terrible.” Then, her face started to move on its own for a second time, and again she couldn’t open her mouth. “I knew something wasn’t right and it was time to go see what was wrong.”
MaryMartha visited her local primary care doctor, who after administering an MRI, diagnosed her with Chiari malformation, a rare abnormality that causes part of the brain (the cerebellum) and brainstem to extend into the spinal canal. If left untreated, the disorder could progress and lead to serious complications.
After being diagnosed with Chiari malformation, MaryMartha began searching online for help. “I was so scared and didn’t know what was going to happen to me, so I just started looking for help on my own,” she says. She soon found an online support group that helped answer some of the questions she had. But that wasn’t enough. She didn’t want to live the rest of her life dealing with her symptoms, which were currently being treated with medication.
After doing research online, she stumbled across the UPMC website and found inspiration. “They seemed like they had the most experience with this type of condition, so I figured I would just send my information and see what they could do,” she says. Within a few days, she was meeting with Dr. Robert Friedlander, Chairman of the Department of Neurosurgery, who had a dose of good news. “He took the time to go over my x-rays and explain why I was having these symptoms, and how they can be fixed through surgery,” she says. “He was so helpful and I knew that I was in the right hands.” Three months later, after she had organized all her life priorities, she was ready for surgery.
MaryMartha was in good spirits before her scheduled five-hour surgery. She was dancing and singing, and ready for it to get underway. “I wasn’t concerned at all because of the time I spent with Dr. Friedlander, I knew that he was the best of the best and he’ll make sure I’m OK.”
Dr. Friedlander was able to treat MaryMartha with Chiari decompression surgery, where a small section of bone at the base of the skull is removed to give the brain more space and relieve pressure on the brainstem, cerebellum, and spinal cord. Shortly after the surgery, MaryMartha was already back on the road back to leading a normal life.
The day after surgery, MaryMartha was able to walk and already was experiencing relief from her symptoms. “Pretty much right after surgery, I started feeling better,” she says. “As the days and weeks went on, my pain and face movements were significantly less, and I was able to go back to work after five weeks had passed.”
Because there is no cure for Chiari malformation, MaryMartha will live with the condition for the rest of her life. But she is confident that after her surgery, her symptoms will be manageable. “I still have occasional symptoms and pain, but they are nothing like how it was before surgery,” she says. “I’ve always loved to dance and sing and I have no problem doing that now. The only thing I can’t do is ride a rollercoaster, and I’m fine with that!”
Our patient stories profile a number of patients who have had minimally invasive brain surgery at UPMC. Although everyone's care experience is unique, we hope that sharing these stories will help other prospective patients and their families better understand these procedures and their potential benefits.
MaryMartha's treatment and results may not be representative of all similar cases.
Dr. Robert Friedlander discusses Chiari malformation diagnosis and treatment.
Faced with Chiari malformation, MaryMartha was able to find hope and relief at UPMC.