Ido Simyoni’s life has been marked by a relentless battle against fibrous dysplasia, a rare congenital bone disease that primarily affects the cranial facial structures. For nearly a decade, Simyoni enjoyed a respite from surgeries until he was 26 when another tumor emerged. Despite initial skepticism from doctors, Simyoni’s intuition about the recurrence proved correct.
In the subsequent surgery, doctors found that the tumor had grown into the dura mater, a protective layer surrounding the brain. They repaired the damage, replacing part of his forehead with bone from his skull. During his recovery in the neurological intensive care unit, Simyoni faced a life-threatening complication, leaking excessive cerebrospinal fluid. However, he was fortunately saved by the medical team.
Following this surgery, Simyoni faced a new challenge as the bone used to replace his forehead began to shrink, leading to visible deformations on his head and frequent nasal infections. Despite these obstacles, Simyoni’s indomitable spirit led him to become a marathon runner.
However, last year, he noticed an increase in daily headaches and sought medical attention. Initially reluctant due to his past experiences with hospitals, Simyoni eventually consulted with several doctors. While most proposed procedures to improve the appearance of his forehead, one unique doctor, both a neurosurgeon and plastic surgeon, suggested a two-step approach to address his health issues comprehensively.
Fibrous dysplasia, as explained by Dr. Netanel Ben-Shalom, is a condition that can deform cranial facial structures, often growing to compress critical structures like the brain or eyes, necessitating surgical intervention. In Simyoni’s case, the disease affected his frontal sinus, eye socket, and the bone beneath the frontal lobe, leading to a life-threatening situation where a persistent infection could reach his brain.
Dr. Ben-Shalom’s two-surgery solution proved to be the most effective approach. In the first surgery, the surgeon removed the reconstructed forehead bone, cleaned out the infection, and repaired the barrier between Simyoni’s nose and brain. This temporarily altered Simyoni’s appearance. After a six-week recovery period, the second surgery involved using a customized, 3D-printed piece to reconstruct his skull. This approach was considered safer than using the patient’s own bone.
Simyoni faced challenges during his recovery, especially the period between surgeries when he had no forehead structure. However, he gradually regained his confidence and resumed his passion for running. His ambitious goal for 2024 is to complete the six major world marathons, having already run several of them in under three hours before his surgeries.
Simyoni’s inspiring journey is a testament to his positive attitude and resilience. He aims to motivate and uplift others facing health challenges or difficulties, emphasizing the importance of personal choices in determining one’s path in life. Despite enduring the trials of fibrous dysplasia and numerous surgeries, Simyoni’s story serves as a beacon of strength and determination, illustrating that even in the face of adversity, one can emerge stronger and continue pursuing their dreams.
