Three Indiana Brothers Diagnosed with Rare Crippling Condition after Frequent Headaches.
A family from Indiana has recently opened up about their ongoing health battle as they reveal that all three of their sons have been diagnosed with the same rare and crippling condition: Chiari malformation. The boys, Lincoln, Norrin, and Remley Niece, are now matching scars on the back of their heads after undergoing surgeries for the condition that affects slightly less than one in 1,000 people globally, according to experts.
Chiari malformation occurs when the brain at the back of the skull presses through a normal opening and extends into the spinal cord. The symptoms include neck pain, unsteady walking, poor hand-eye coordination, dizziness, among other side effects, according to the Mayo Clinic. Before being diagnosed with Chiari malformation, each brother experienced frequent headaches and vomiting.
The first Niece boy diagnosed with the condition was Remley in June 2022 but did not need surgery at that time. Lincoln reportedly started having headaches at age five; however, they were initially thought to be tied to a congenital heart defect. A CAT scan later revealed in February 2023 that he also had Chiari malformation and underwent surgery the following month. Remley was still struggling with symptoms and went under the knife in August 2023, while Norrin began having headaches before his surgery in January.
Dr. Laurie Ackerman of the Riley Hospital for Children performed each of the surgeries, known as Chiari Malformation Decompression, where a small piece of the back part of the skull and a three-by-three centimeter piece of bone were removed to disimpact the area and allow fluid to move around normally.
Norrin and Remley experienced complications afterward, leading to a shunt being placed to distribute extra brain fluid to the belly. Despite these setbacks, all three boys have shown vast improvement and can mostly be typical kids but with some key precautions to avoid bumping their heads.
The parents are speaking out to raise awareness about Chiari malformation and its symptoms, which may go unnoticed in many people. They hope that by sharing their story, they can help other families struggling with similar issues.
