As anyone with a rare disease knows, there is no short explanation for what happened. So, though this looks like a lot, it just scratches the surface of my ICR & TJR journey.
I began having jaw pain and discomfort around the age of 18. By the time I was in college, it progressed to the point where eating, talking, and breathing were difficult. The maxillofacial surgeon I had been seeing monthly was only managing my symptoms by prescribing muscle relaxers, pain medicine, and assuring me it would correct itself.
In 2009 I took a trip home to visit my parents who hadn’t seen me in several months. With the gap in time since my last visit, they could immediately see there was something wrong with my face and speech. The daily exposure to my own face didn’t grant me the fresh eyes needed to see the slow and gradual progression of ICR.
This started my journey to find a diagnosis and a treatment plan. I saw surgeons from Florida, Delaware, Pennsylvania and ultimately Dallas, Texas. This exposed me to a large variance in treatment options and there was almost nothing available online other than some medical articles that I could barely understand. I remember saying, “where do you go when even Google doesn’t have the answer?” This lack of information is what sparked my desire to make a video blog and website to help spread awareness and understanding for future patients.
Though many options for surgery were presented to me, they all ended up in the same place: Total Joint Replacement. The only difference was that some doctors said I would require several surgeries before TJR. Some surgeons were very confident, some were very unsure, some were excited to try a new surgery they hadn’t done before, and some seemed down right scared and admitted ICR/TJR was out of their depth.
When I met with Dr. Wolford he was calm and knew immediately how to treat my condition. His medical articles had been the only ones available online- he practically discovered ICR and performed TJR surgery for over 20 years. He answered all of my questions and concerns and ultimately he is whom I felt most comfortable with. Also his surgery plan seemed the most logical.
I had my surgery in October of 2010. I went down to a whopping 92 pounds on my 5′ 10″ frame. I fought with insurance companies almost daily about whether my surgery was considered medical or dental – it was a never ending game of pass the buck. I raised funds, sold everything I owned, withdrew from the seat I had for grad school and moved in with my parents so I could afford my surgery and they could help with my recovery. It was a long and hard recovery period with many syringes, baby bottles, and liquid diet recipes. I am confident I chose the best surgeon and surgery for me. I am so grateful for the success of my surgery and the care I was given at Baylor Hospital – it has truly given me my life back. I am now healthy, back up to fighting weight, and happily pursuing a career in medicine.
I hope my videos and this website can answer some questions for you and provide you with a sense of comfort and confidence while facing this surgery.
** Please know anything I post on my blog or say in my video log is just what I know from my experience. I am in no way qualified to give medical advice or opinions. ALWAYS consult with your doctor and NEVER take advice from non-medical people on the Internet **
Here is an article that was published on my journey before surgery: http://www.hockessincommunitynews.com/article/20100913/NEWS/309139982