2020 – Journey Into the Unknown

Due to the global pandemic, 2020 was a life-altering and crazy year for the whole world. However, I never thought my life would flip upside-down.

In March of 2020, shortly after schools were shut down due to Covid-19, I caught a virus. Throughout my life, other than chronic foot injuries, I had always been a healthy person. Little did I know, this was about to change. The virus lasted for two weeks, and I had flu-like symptoms. I remember being terrified that I had contracted the new Covid-19 virus.  However, we weren’t able to find out for sure because tests weren’t readily available yet. 

After the virus passed, I was left with a dull intractable headache. Weeks and weeks went by, and the headache never went away. In April, my mom even took me to the optometrist to rule out any vision changes that may be causing the headache. During the summer, I began to develop photophobia (light sensitivity) and often retreated to a dark closet to nap rather than being by the pool with friends. I began to take an unhealthy dose of Advil daily in order to function. By nature I am not a complainer, therefore, I rarely brought up my headaches because I assumed they would go away on their own. I was very wrong. 

Nausea and vomiting began towards the end of July.  My parents became more alarmed and scheduled an appointment with a neurologist. We weren’t able to get in to see the neurologist until August, and by then I was suffering from vertigo, vision changes, ringing in my ears, vomiting, photophobia, sound sensitivity, and an even worse constant headache. My head felt way too heavy for my neck. I was diagnosed with vestibular migraines and told to take magnesium oxide and B2 supplements. My mom, Millie (my grandmother), and I left the appointment incredibly discouraged because we did not get many answers or concrete solutions. The neurologist told me that everyone has headaches, and it was “no big deal, it was probably a teenage, female thing.”

I was determined to keep going to school. I was a sophomore and taking all honors classes along with three AP courses at Bishop England. Falling behind because of absences was not an option because of my dreams to attend a top college in the US or abroad. However, my body simply would not cooperate. In September, I had to completely abandon the idea of going to school, which to me was devastating. 

In the following months, I continued to see doctors in many different specialties, including an ENT, an ophthalmologist, a neurological immunologist, an allergist, a homeopathic doctor, several more neurologists, and many pediatricians. I was put on many migraine and headache medications including Triptan class, the Tricyclic class, injections (ajovy, botox), etc. but none of them relieved my symptoms. I also explored acupuncture, dry needling, and massage therapy, but found no relief. Grasping at straws, my mom even tested the air and the water in our home. My mom took down all of the pictures in her office and created a CIA-like wall full of sticky notes describing all of my symptoms, medications tried, tests done, tests needed, doctor appointments, and potential diagnoses. She and my dad stayed up late into the night researching different illnesses that shared my symptoms. Many doctors doubted the severity of my symptoms and told me I should try therapy or antidepressants, but my parents knew that my pain wasn’t in my head. If it weren’t for my persistent parents, I don’t know if I would be here today. I was too sick to advocate for myself, and I am so grateful that they never gave up or settled for a diagnosis that didn’t make sense.

I was first hospitalized for pain control in September 2020 after administering Ajovy (fremanezumab), an injection designed to prevent migraines. Needless to say, Ajovy did not help, as it left me violently vomiting on the ride to the ER. I continued to be hospitalized at least once or twice a month for the rest of the year. 

My grandmother, Millie, came to live with us to help with my care. She stayed in my dark room with me and kept me positive each and every day. No doubt, Millie has a servant’s heart. She is a one-of-a-kind person and was so helpful and encouraging to me and my family during this time. 

One morning, I told my mom about some pain I had in my mouth. I hadn’t mentioned it because the pain paled in comparison to the rest of the pain in my body.  Nevertheless, my mom was appalled when she looked in my mouth and saw what appeared to be an infection near my back molar. We saw my dentist the next day and he prescribed Clindinmycin, a big gun antibiotic, to help with the infection.  And, he advised us to have my wisdom teeth removed to avoid re-infection. My mom quickly got me in to see an oral surgeon and I had all four of my impacted wisdom teeth removed. Unfortunately, this compounded my pain and sent me to the ER with an out-of-control, explosive migraine. 

In November, I declined significantly. I was vomiting three to five times daily.  Any light accelerated my pain so my dad put cardboard up on my windows to further darken the room. My days consisted of virtual doctor appointments and staring at the dark ceiling all day long. I couldn’t focus on anything so watching movies wasn’t an option. 

We were out of specialists to see.  None of the doctors had answers or even suggestions. Out of desperation, my mom started exploring non-traditional options. Some recommended that we see a cervical chiropractor since my headache pain originated in the base of my skull/upper cervical area and then fingered up my skull to my forehead. My mom investigated different options and found a professional who would take x-rays prior to any manipulation. Initially, we were told it would be a two-month wait to be seen, but after persistent calls, we were able to be seen in a couple of days. 

The chiropractor was the first person to examine my neck. She took an x-ray of my spine while standing up and seemed very shocked. Asking me what injury I had endured, she told me that my C1-C2 looked worse than some of her trauma patients. Then, she gently manipulated my C2 vertebrae. Instantly, my face flushed red and my headache improved significantly. We were stunned by the improvement in my symptoms.  My mom and Millie had tears in their eyes and couldn’t believe that after hundreds of hours in doctor appointments, it was a chiropractor that gave me symptom relief. I was even able to go out to dinner with friends for the first time in months. Sadly, this relief only lasted about four hours before my C2 slid further out of place and everything got significantly worse. 

That night, I experienced an increase in my headache pain, stomach pain, nausea, sweats and chills, chest tightness, and all-over body aches and sharp pains, especially in my neck and back. My body was in a full-on dysautonomia flare-up. I could not even regulate my body temperature. I spent that night in my parents’ bed curled up in a ball crying and terrified about what was happening to me. I thought I was dying. I was so scared and sad as I felt I wasn’t ready to die. There were things I wanted to do, experience, and accomplish in my life. Two days later, I was admitted to the hospital again to run more tests and I was put on a morphine drip for pain control. 

It occurred to my parents that what I had must be a structural problem since I had experienced relief following the manipulation. This was the first time we realized that my problem could be stemming from a structural issue in my neck. My father organized an appointment with Dr. Sunil Patel, head of neurosurgery at MUSC. He diagnosed me with hypermobile Ehlers Danlos Syndrome (EDS) and made the tentative diagnosis of Craniocervical Instability (CCI). 

To confirm CCI, I had to get an upright MRI scan. Unfortunately, the closest upright MRI was over three hours away, an impossible feat for me. There was no way I would be able to endure a six-hour round trip journey to receive this test. It was increasingly difficult to transport me, just the bumps along the road left me in excruciating pain. However, an extremely generous family friend flew us privately to Greenville, SC to get the Upright MRI. It was difficult for me to sit up for more than ten seconds, so it was agonizing to sit up for the duration of the thirty minute scan and to flex and extend my neck. No doubt, it would have been much much easier if I would have been able to get these scans in Charleston.

The Upright MRI confirmed CCI, and I was so relieved to have a diagnosis and cause for my pain.  Now that we had an accurate diagnosis we could start addressing the issue, and there would be a path to becoming functional again. At last, my family and I had hope! Dr. Patel prescribed me an Aspen Vista neck brace and physical therapy. The hope was that physical therapy would prevent a major neurosurgery. The surgery would be irreversible and would significantly impact neck movement, so it was not something to rush into unless there were no other options.

I began PT with Susan Chalela, a knowledgeable physical therapist who specializes in the treatment of EDS and CCI patients. Unfortunately, my neck was too unstable to resolve through PT. In the first week of December, I lost the ability to walk. It was so scary to have no control over my leg coordination. My ankles would roll right over while my knees hyperextended or buckled and my hips twisted. I had to stop going to PT because although it was located under five minutes from where I live, it was far too strenuous and painful to get there. I continued to spiral downward, decondition, and lose weight. Ultimately, Dr. Patel recommended the skull to C3 spinal fusion.