December Decline

In November, I had my feeding tube removed and stayed with my Uncle Scotty and Aunt Rachel in Florida for a few weeks. During this time, my health was in a relatively good place. Although my migraines and fullness were constant, I was able to walk, tolerate light, and function. I focused on restoring my nutrition which gave me a lot more energy and helped manage my symptoms.

It was tough being away from my immediate family in Charleston, but a change of scenery was good. Plus, my Uncle Scotty has four of the cutest children ever. Their ages range from 2-7 years old and they are fun, kind, and incredibly entertaining. They have a guest cottage on their property and I stayed there.  I had a great routine.  During the day, I studied a good bit (started four AP online classes with Johns Hopkins and George Washington University). Light exercising was part of my routine and I enjoyed taking walks with my Aunt Rachel, Aunt Andria, and my cousin Abby. So much of my extended family on both my mom and dad’s side live in Florida, and it was really nice to see everyone, especially since I had missed the last several holidays/family reunions because of my health issues. 

My parents and siblings arrived in Florida a couple of days before Thanksgiving.  Although a bit overwhelming, as there were about thirty plus family members, it was fantastic to visit with everyone. It had been the longest I had ever been away from my parents and siblings. So I would have a little quiet, I stayed with my dad’s parents, Gramma and Grampa.  They are loving, thoughtful, and kind people. They do absolutely everything together, it’s super cute.

When lots of people gather, germs are often passed.  Unfortunately, during this family reunion, I caught a cold from one of my cousins. It took me down with an intense headache, nausea, a cough, a sore throat, fatigue, vertigo, and lots of body aches. My mom and I had planned to go on a college trip the weekend after Thanksgiving break. Although she had appointments set up and the schedule finalized, she suggested we postpone and I was devastated. It seemed my academics and dreams seemed to continue to be thwarted. I had been so excited to see the college campuses and have a weekend adventure with my mom.  Begging her to keep the trip, she did. A few hours before we departed, she organized an IV saline infusion which helped me feel a little better.

However, at 10,000 feet in the air, my head felt like it was going to explode.  My mom retrieved ice bags from the stewardess and gave me some medicines we had brought. It was a terrible feeling, but gratefully the flight was only about an hour. Our plan was to visit Princeton, UPenn, Johns Hopkins, George Washington University, and Georgetown. Gratefully, the visits were spaced out a bit and I was able to get into the hotel bed and crash at around 4p most days. Although I felt miserable, I pushed myself…too much. The trip left me inspired and intellectually stimulated, but physically drained and deteriorating.

When I got home, I put ice packs on my head and neck and got straight into bed. The virus had caused many of my old symptoms to return. My medical team and family believed that this virus caused another craniocervical strain and possibly some brain stem inflammation and mast cell activation. My legs began to feel uncoordinated and weak, my neck and back spasmed and ached, my headaches were out of control, my vision was unreliable, my body rash returned, and vertigo caused me to fall several times. We tried a round of steroids and many fluid infusions, but nothing helped. I felt so defeated. I knew how fragile my health was, and it was unnerving to think that I may be declining again.

Completely bedridden for the month of December, I only left my bed to bathe and use the restroom. Each year for Christmas, my parents give us a family trip. In theory, this is to take the place of “stuff”. Sadly, I was in no condition to even leave my bed, let alone travel. So, my mom and Millie stayed back with me while my dad and three younger siblings departed for our family ski trip with my Aunt Andria and her family. It was hard for them to leave us, but we were so glad they did because it helped normalize a tough situation for my siblings. 

The week before Christmas, I felt a sharp stab in my lower back. I remember mentioning this new symptom to my mom and making a joke about how I always have random sharp pains that jump around my body. Hours went by, and the stabbing pain in my lower back remained. The pain intensified to the point where I was screaming. My family wanted to take me to the hospital, but I knew the movement of driving and running tests at the hospital would only cause more pain. My legs started to feel like they were falling asleep. Pins and needles went down my low back all the way to my toes. Then, my legs went numb. I began to panic. My parents were frantic, calling several doctor friends they had and searching for answers. When I tried to move my legs, they wouldn’t move. I was terrified I was becoming paralyzed. My skin became very sensitive to touch. 

This escalated quickly to the point that we had to turn off the fan and air conditioning because the movement in the air felt like fire and shocks to my skin. I also had to prevent anyone from sitting on my bed or opening the door quickly. At times, I didn’t even want people to step into my room because the floorboards creaking slightly moved my bed. My central nervous system was completely out of whack. It was unlike the pain of the past and it left me petrified like I was in a nightmare or trapped in some sort of sick horror movie. I craved the company and comfort of my family, but I couldn’t bear the pain of their movement when they were inside my room, so I begged them to leave me alone. It was so incredibly isolating. And, my family was left devastated that they nor the doctors could help me.

I spent the second Christmas in a row alone in my room on pain medication. My dad’s parents were in town for Christmas per tradition, and my loving grandma pulled a chair up outside my door and unwrapped some little presents for me. 

The day after Christmas, I went to the ER for pain control. It felt like a little deja vu as this had happened the Christmas prior. An X-ray and contrast MRI of my lumbar spine were done. I remained on fluids and morphine for many hours before returning home with no answers. I prayed and prayed for relief, but it never came.  

Grasping at straws, I began doing ten minute ice baths daily. These ultimately did nothing, but I was desperate and willing to try anything, even random anecdotal tactics from the internet. In addition to the other medications for central nervous system disorders and pain, my pediatrician put me on Celebrex, but I still felt no relief.

Once again, we reached out to Dr. Patel in search of answers. Dr. Patel knew that it would be impossible for me to come to his office for an appointment, but he spoke with us over the phone and that evening even came to my house to further evaluate me. His dedication to his practice and to his patients is inspiring; I am truly blessed to have such a skilled and caring neurosurgeon on my medical team. He was saddened by my rapid decline and believed that I was suffering from an occult tethered spinal cord. An occult tethered spinal cord refers to a clinical syndrome where the spinal cord is tethered by the filum. Patients with this syndrome are often misdiagnosed because it isn’t picked up on an MRI scan. Dr. Patel explained that I may need surgery if I continued to decline or became incontinent, but hoped I would heal and not need it. I did not want another spinal surgery, so we collectively decided that we would ‘wait and see’. 

Four days later, I became completely incontinent and continued to decline and decondition. My dad informed Dr. Patel, and I was shortly admitted to the hospital. On January 4, 2022, my spinal cord was de-tethered.