“What’s wrong with your baby?” Mom often heard from the mouths of curious, but ill-mannered children; or from the eyes of curious, but afraid to ask adults. Defensively she would say, “Nothing. What’s wrong with you?” Admittedly, there was something different about me. At the time, we did not know what.
On the 10th of August 1993, I was born caesarean section. My humongous head had been stuck. (I have a big head, both literally and figuratively.) The delivery doctor decided to use a suction cup-like machine to try to help me out. The suction cup was attached on the speech area of my brain. Considering the fact that speech problems come with Gorlin Syndrome, run in the family, and the suction cup debacle, it is a miracle that it does not sound like I am speaking a foreign language. (Honestly, I did have my fair share of difficulty with speech in my early years.)
Placed in the intensive care unit after my tumultuous delivery, I made no friends due to my constant screaming. (My voice is deep to this day… part Gorlin Syndrome accent and part deepened from endless screaming as a baby. A Staples employee once mistook my voice as a male voice over the phone, and a music instructor once thought that I could pass as a male tenor.) To the relief of the babies’ intensive care staff, I went home two weeks later. The hospital staff tried to convince Mom and Dad to take me to see a neurologist. But decided against it for fear that I would turn into an overly drugged baby zombie. (The Walking Dead was not popular yet.)
Over the next few years, my vision gradually decreased, resulting in a visit to an optometrist an hour away. After an eye torture session, I vomited on the way home. Not wanting to repeat history, Mom and Dad took me to the optometrist in the local mall, where she decided that I needed glasses. (I went through torture and vomiting… for glasses?) To add to the frustration, my throat kept getting sore, leading to the first of many surgeries. The family doctor determined that my onslaught of sore throats would require a tonsillectomy and adenoidectomy.
In my medical history, mostly everything occurs more than once, and my adenoids were no exception. The adenoids grew back, leading to another adenoidectomy. In the meantime, my ears repeatedly required surgically implanted tubes. On one occasion, a doctor pulled out a pea-size ball of wax. On the second “successful” time, the hospital staff had to come up with a new operating procedure on the spot just for my ears, which included a second set of tubes. Later, the tubes twisted in my ears, causing me to lose hearing temporarily leading to another torture session, this time for the ears; complete with a vacuum-like object to clean my bloody ears. Needless to say, that was my last round of tubes.
Having a reputation for being uncooperative, I dreaded the possibility of mouth surgery. I tried to be cooperative, but inherited gag reflex, so most of the dental assistants worried that they would be seeing my breakfast in reverse. In the fall of 2004, I started to experience mouth pain and a raisin cookie-like taste in my mouth. Fearing that I had a cavity, I was silent, ridiculously hoping that it would go away. Unfortunately, the pain started to get worse, leading to me falling out of bed in self-defense after dreaming that someone was stabbing my mouth. I kept getting sick, leading to our family doctor declaring that something was wrong. But he did not know what it was. After tearful pleading from Mom, I finally remembered the increasingly agonizing mouth pain. I opened my mouth, and Mom found what she called “a bag of pus.” Mom and Dad talked after I had “gone to sleep,” and they worried that it could be cancer.
The next day, Mom and I went to the oral surgeon who took a panoramic x-ray and could not find anything. Mom saw something that was above my mouth, and she pointed it out. “That’s her molar,” the oral surgeon called out in a panic. “How did it end up there?”
After looking in my mouth and comparing it with the panoramic, the oral surgeon took Mom out to the hallway and asked her if she trusted him. “I think so, why?” Mom questioned in confusion. “This little girl is out of time,” he said. Mom broke down and cried. The oral surgeon asked Mom to pray for him and me. Immediately whisked away, everything became a blur. An IV was in my hand, my blood pressure was continuously tested, and they gave me oxygen. Three hours later, after seeing what looked like blood and guts on a paper towel, my mouth and butt were sore. The oral surgeon had removed the trouble-making keratocyst and molar. He had discovered other keratocysts. To save me from pain, he put tubes in them to drain them with the premise of removing the keratocysts at a future surgery. I later found out that all of the patients in the waiting room had to go home that day because the doctor declared an emergency.
The keratocyst draining tubes turned out to be a nuisance. Dad had to remove a piece of hot dog from one of the tubes in front of everyone at an ice cream shop. They probably lost their appetite after that. Luckily, the next surgery went better.
I was due to have another surgery in December to remove the “last” keratocyst. However, I felt like there was another keratocyst. The oral surgeon could not find it at first, but at the next checkup appointment, he did. He rescheduled the surgery for the day after Thanksgiving. The Black Friday surgery turned out to be noteworthy for more than the name. After the surgery, I felt nauseous. My IV-controlled hand accidentally knocked over the trash can. I tried to call out for help, but a mouth full of gauze prevented me. I threw up a lot of blood… and the gauze. My oral surgeon happened to pass by the room. His panicked, confused, and hilarious facial expression is unforgettable. One of the nurses changed me and, to the relief of everyone, sent me home.
Over the years, I have lost track of how many keratocyst surgeries there have been. (Nine?) After a couple more surgeries, everyone noticed an unusual-looking mole on my forehead. People tried to persuade me to remove it for cosmetic reasons, but I refused because of my experience with a cosmetic doctor (long story short: a practically blind doctor with a laser “stabbed” my thumb wart, just for the wart to grow back). An orthodontist appointment was about to change my mind about the mysterious mole…
My braces were getting removed for the second time. The fact that my mouth required a dentist and two orthodontists for two sets of braces should say a lot about my medical history. During the appointment to remove the braces, the orthodontist took Mom to the side and told her that I was a sweet girl (I think he was talking about the wrong patient) and to take me to a dermatologist before it was too late. Mom cried as she told me this, and she told me that no amount of post-traumatic stress memories of wart doctors would change her mind. Therefore, we found ourselves at the dermatologist office the same day of senior pictures. When the office called us back, the dermatologist told us that he thought that my mysterious mole was a basal cell carcinoma (BCC). In response, Dad folded over as if someone had punched him in the stomach and Mom’s eyes watered. The dermatologist wanted to perform a biopsy that day, to which Mom panicked and told him that I was supposed to take senior pictures.
My senior pictures turned out great, but something else was on Mom’s mind. After my first keratocyst surgery, Melanie had approached her with internet research on a rare condition called Gorlin Syndrome. Mom, frustrated after fruitless fights with the insurance company, angrily told her to stop playing online doctor. During junior year of high school, I was a library aid and used the sources to search for causes of keratocysts. Gorlin Syndrome came up in a medical database. I looked at the condition excitedly, thinking that all of the medical mysteries in my life would finally have answers; however, only one of the criteria matched. Later that day, I told mom about my discovery. Mom told Dad about the possibility of Gorlin Syndrome. He read the information and wept, believing that I did have Gorlin Syndrome. When we went back for the biopsy results, the dermatologist confirmed a Gorlin Syndrome diagnosis.
A biopsy confirmed that the mysterious mole was a BCC. I had Moh’s surgery. Thankfully the dermatologist only had to remove one layer of skin to extract the cancer. In the meantime, my oral surgeon had decided to retire. We found a new oral surgeon through our orthodontist contacts. As excited as the dermatologist was to have a Gorlin Syndrome case, the new oral surgeon readily accepted.
Shortly after, I became a high school graduate. One keratocyst surgery later, I was a college student, living and sweating in the dorms, getting sick every other week. My excess sweat had caused a U.E.O. (unidentified eyelid object) to form on my right eyelid. Medically, it was causing my eyelid to droop and become tired. Therefore, we went to the dermatologist, and he removed it using local anesthesia. My eyelid has a bad history of fluttering. Norman Bates would have been thrilled with the possibility of a knife abruptly meeting my right eye, but the dermatologist and I were not. Therefore, it was a nerve-wracking surgery for both of us, and in the tradition of Gorlin Syndrome, the U.E.O. grew back a couple of months later.
During a post-op visit with my oral surgeon, he noticed the U.E.O. and offered to remove it under general anesthesia. Mom and I jumped at the possibility and he removed it, but it came back. The oral surgeon and my dermatologist referred me to an eye specialist. The eye specialist removed the U.E.O. under both local and general anesthesia, with the diagnosis of hidrocystoma. When I “woke up,” my liveliness rivaled that of a coma patient.
What has perplexed family members the most about Gorlin Syndrome is trying to figure out the family origin. One family member even went so far as to take a notepad along to family reunions and ask family members about mysterious medical ailments. The only weird symptom turned out not to be a part of Gorlin Syndrome at all. What perplexes me the most about Gorlin Syndrome (aside from the keratocyst pain) is when people try to set limitations on me based solely on the fact that I have a medical condition. I am fine with legal and ethical limits; however, I am not fine with limits “based” on Gorlin Syndrome. Someone once told me that I should not try to educate myself or move forward based solely on my medical condition. I responded with, “That is not an accurate reason for me to not move forward with my life. It should not matter if someone has a medical condition or not. As clichéd as it may sound, I have Gorlin Syndrome, but it does not have me.” There is my inspirational thought in this otherwise funny article.
Currently, I apply Coppertone Sport 100+ whenever I prepare to go outside. Mom has me so stockpiled on sunscreen that it could cover a full team of summer volleyball players. So far, I have not had any more BCCs, to the grateful amazement of my dermatologist. However, keratocysts have been in relative abundance. Approximately, I have a keratocyst surgery every six months. As for the hidrocystoma, the eyelid is still recovering as I write this, so we will just have to wait and see. God bless and thanks for reading this article. Special thanks to (in no particular order): Mom, Dad, Melanie and Sean, and other family members that are too numerous to list.