Faces of Chiari

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Faces of Chiari - Matthew

Our youngest son Matthew, who is now 2 years 7 months old, suffers from an incurable disease called Arnold Chiari Malformation. He had experienced issues from birth and had gone undiagnosed until his symptoms became life threatening in May 2008. He subsequently underwent emergency brain surgery on May 17, 2008 and was the youngest Chiari patient to undergo this type of invasive surgery at this well-known Boston hospital where they removed his C1 and partial C2 vertebrae, a half dollar size portion of his skull. They opened the outer protective layer of his brain (the dura) and removed the portion of his cerebellum that was wrapped around and strangling his brain stem and herniated down to his T2 vertebrae in his spine. Had we not brought him back to the Emergency Room when we did, our son would no longer be with us and his cause of death would have been listed as SIDS.

I am happy to say that he has recovered well from the surgery but continues to show signs and complains of pain in his head, neck, legs and arms. He also suffers from Myoclonic Astatic Epilepsy (MAE) due to the brain trauma he suffered. He will also require additional decompression surgery in the future as the bone they removed will grow back causing increased pressure in his head. With every growth spurt he goes through, his symptoms become more evident and he has never fully recovered his ability to eat and drink certain foods without aspirating into his lungs.