Lillian's Joint Replacement Journey
THE BACKSTORY:
My name is Lillian Roman, a 21-year-old college student with a progressive, rare degenerative bone disease called Idiopathic Condylar Resorption (ICR) of the Temporomandibular Joints (TMJs).
As a result of this condition’s progression over the last ~7 years, I have experienced:
• A severely uneven bite with only one tooth making contact when I bite down (causing a trauma-induced abscess requiring root canal).
• The inability to chew solid foods (being limited to soft foods and liquids)
• Continually changing nerve, joint, and muscle pain as my jaw’s condyle bones rapidly degenerate.
• Emotional distress from losing basic functionality at a very young age (ability to eat, speak properly, sleep, breathe easily, etc.).
• Emotional distress from watching this disease alter my face, through asymmetrical joint degeneration and recession of my lower jaw.
THE TREATMENT PLAN:
The only treatment option is Total Joint Replacement (TJR), combined with extensive surgery of my upper jaw, and continued orthodontics.
Due to the specialty of this surgery, I am forced to travel outside my home area. After a year-long process of research and other consultations, I was able to find a surgeon in Oklahoma City, OK, who has the expertise to effectively restore full functionality through the following treatment plan:
• Bilateral Total TMJ Joint Replacements (to remove diseased jawbone and enclose the prosthetics with fat to prevent bone from regrowing)
• Lefort I Maxillary Osteotomy with Bone Graft (in which my upper jaw will be cut into multiple sections to expand and fix my jaw’s asymmetry and improper rotation)
• Coronoidectomy (in which my coronoid bone in my lower jaw is removed to restore my right side of my face to its original height, making it symmetrical with my left, and creating an even bite)
Surgery is anticipated to occur in early 2022 and the date will be confirmed following the completed production of the prosthetics. The timing of surgery will also defer my last semester in college, where I am pursing a degree in Spanish Education.
THE COSTS:
My insurance plan does not cover this operation, nor do other available plans in my area. Given the very high out-of-pocket costs we are incurring upfront, we are reaching out for help in covering a portion of the following expenses:
• Surgeon, hospital, and orthodontist fees
• Cost of custom TMJ prosthetics
• Travel fees and accommodations (surgery requires one-month stay in Oklahoma City for routine follow-up appointments)
HOW YOU CAN HELP:
• Moral support through sharing my story
• Help with surgical, orthodontic, and travel expenses
Surgery is officially scheduled for January 21st, 2022! Your support will give me the life back that I once knew prior to the severe progression of this diagnosis. Thank you so much for your care and consideration!
Lillian Roman
