A few weeks before my nineteenth birthday, I was sitting to the right of my mom. When I went to look at her, she pointed out that my left eye did not track with my right eye, which made it look like I had a lazy eye.
The next day, after we had all laughed it off (because it did look quite goofy), my mom made an appointment with a neuro-opthalmologist. We went in on a busy Saturday and after he examined my eye, he requested that we make another appointment on a day when he would have more time to dedicate to me and the testing that would have to be done.
About two weeks later, my mother and I went to his other office and he examined my eye. He asked me if I had experienced any double-vision recently, and I realized I had. So, he explained the possible reasons for the eye (which he diagnosed as sixth cranial nerve palsy): it was an infection, or, in very rare cases, a brain tumor. He ordered a chest x-ray, blood work, and a head MRI.
The blood work and chest x-ray went well and nothing was found. Going into my MRI, my mother was optimistic, but I just had a feeling that the diagnosis was going to be bigger than a little infection. After the MRI, my mother and I got lunch and were high in spirits. When we returned home, I got to work on my classes (they were online- thanks, 2020). A few hours later, my mother ran into my room, very upset, and told me to come to the phone.
My doctor was on the other end. He told me that I had a mass in my brain that was pressing against my sixth cranial nerve. He suggested that it was a very rare form of bone cancer in my brain called chordoma that had grown on my skull base, in the middle of my head. I was diagnosed two days after my nineteenth birthday.
Since then, my diagnosis was confirmed and I had surgery to remove the tumor. I had many complications, like infections and brain fluid leaks, but I made it out. There was about 5–10% of the tumor left, so I underwent proton radiation therapy to kill the rest of the cancer. In a few weeks, I will have been in partial remission for a year 🙂 I also had eye surgery about ten months ago to correct my eye, which was stuck looking inward since my first surgery. Since then, I’ve been dealing with a lot of other issues because of my tumor and treatment, like chronic nerve damage/pain, Hashimoto’s disease and hypothyroidism, but I have a wonderful team of doctors who have provided me with great treatments.
I was a freshman in college when I was diagnosed, and now I’m going to be a junior. I’m studying psychology and music, and I participate in my college’s choirs, theatre productions, and student life team. In the future, I’m hoping to get my Master’s degree in mental health counseling and work as a therapist for adolescents and young adults with disabilities, rare disease, and cancer. I would also love to perform professionally in my city’s symphony orchestra/choir and maybe even audition for America’s Got Talent.
I thank the Lord for all that he has done for me<3
In 2013, I was eating a burger when suddenly after taking a bite, I could no longer open my mouth. I was terrified and had no idea why this just happened. I’ve dealt with TMJ for many years and assumed it had to be just that, & maybe a warm compress & massaging my jaw would unlock my mouth. Nothing seemed to work, and I could only fit about the size of my pinky in my mouth. I couldn’t even fit a spoon in. So I made an appointment with an oral surgeon to figure out what was going on. He did a physical exam, and knew right away it must be an issue with the disc in my jaw joint. He scheduled an urgent surgery to get it put back in, but ordered an MRI to go over just to be certain.
The morning of surgery, he met with me briefly before it was time to go under. He said, “ we got your results back from the mri, and there are two things I need to go over with you.” He then proceeded to tell me those two things.
1st, they confirmed the disc in my jaw slipped out and did not go back in when I took that bite out of my burger. So surgery was definitely needed to correct the issue.
2nd, “I need you to see a neurologist. We found a mass in your brain. I’m not a medical doctor & I cant diagnose this for you. Take a copy of your MRI to get this checked out as soon as possible.”
In that moment, which is all I really had to process what he said, my entire world just stopped. This was the most unexpected and terrifying news to receive just minutes before I was to go under for jaw surgery. I will never forget the way I felt in that moment.
It turned out to be a large cyst wedged in between the fossas of my left temporal lobe in my brain. Something my doctors closely monitor but are unable to remove at the moment. Whenever I think about it, it still gets me feeling anxious, especially since it’s still there and growing little by little each year.
EDIT:
Wow! I did not expect my story to get as much attention as it has! I am truly grateful for the kindness and dialogue.
I just wanted to throw some more info here since I didn’t go into much detail:
*The Dr I saw for my surgery was a dental surgeon (DDS) so he was unable to diagnose me regarding the mass.
*A little fun fact: since my jaw was almost shut, I had to remain awake during my surgery. The doctors were unable to place a breathing tube down my throat, so that was the only option. I was given some medication but remember most of it. I ALSO had 4 wisdom teeth extracted right after they fixed my jaw. So I had a 2 in 1 surgery!
*The neurologists that diagnosed me let me know that it was too risky to surgically remove due to the location of the cyst. It’s wedged in between the fossas of my brain & not on the surface. They said it would cause brain damage to go in and extract it. So instead they feel more comfortable monitoring it for growth. The only way they would actually perform surgery is if it ruptures, which would cause damage on its own. (The scariest part of this whole thing).
So that’s kind of where I’m at right now. It really is terrifying. If it was just a benign tumor, I think I would feel better about it making a home up there, but since it’s a cyst, it has the possibility of rupturing. That’s the most difficult part for me. Optimism has gotten me this far and through it all, so that’s the wave I’ll continue to ride. Thank you all again for your kind words & for engaging with my post!
