To add to the chaos, my family was in the process of moving during my hospital stay. My mom decided we should renovate the main house. The plan had been for them to make some updates after we went to college, but there were many reasons why doing it now versus later made sense. Millie, my mom, and dad took turns staying with me in the hospital while the rest of my siblings helped pack up our old house. When I returned from the hospital, I arrived at our new home. Although I was not in a condition to tour our new house, my room was evidently the only fully furnished room, so my dad stayed with me in the new house for a couple of days until the movers brought the rest of the furniture. There is truly never a dull moment in the Severance household.
Movement was extremely difficult following this surgery, so I had to start using a bedpan. Bathing was a near impossibility, and my hair became matted and dreaded. I needed assistance to do even the simplest things such as brushing my teeth.
About a week after leaving the hospital, my temperature spiked, and my incision was swollen. Sharp pains jumped around my whole body. From my forehead to my toes, there was no part of me that did not hurt. My incision continued to throb sharply, especially the incision from the drain. We feared that I may have an infection, but the temperature went down after two days and the pain calmed. It was worrisome that the incision might not be healing properly, but eventually, it slowly began to close. EDS patients take much longer than others to heal.
School was constantly on my mind as I was now almost two months behind. I began working voraciously on completing schoolwork, however, looking at a screen was incredibly taxing and my eyes wouldn’t cooperate. My vision would randomly blur over or start flashing and everything looked like it was moving. Things that were far away seemed to vibrate, and my depth perception was terrible. Needless to say, completing school lessons was incredibly time-consuming. Lessons that usually would take about fifteen minutes were taking me hours to complete, however, I worked hard and was not ready to throw in the towel.
Three weeks post-surgery, I started to regain energy, and I even walked a short distance with a walker once. It was encouraging and it seemed I was on the path to recovery. The medical team suggested physical therapy, so I returned to my sessions with Susan Chalela. My initial therapy sessions went relatively well, and we were making progress. However, this turned out to be short-lived. I’m not sure if I overdid it or my body just gave out. Regardless, I began to deteriorate and migrated back to the symptoms reminiscent of craniocervical instability.
Shortly after I started to decline again, I had a post-surgery checkup with Jared, Dr. Patel’s PA. We asked about a possible Chiari malformation, CSF leak, or even another potential cervical instability. Jared explained that I likely did not have a Chiari malformation because it would have presented in previous imaging, but I should explore a cervical instability or CSF leak. I was worried that the hardware from my skull-C3 fusion had shifted out of place. Dr. Patel called us later that day and ordered an upright MRI scan. Once again, I had to make the arduous journey to Greenville.
Having to get another upright MRI scan was not something I wanted to do. The agonizing pain I would face while traveling and having to sit up for the scan was upsetting. It’s so difficult mentally when you know that intense pain is coming, but there is nothing you can do about it. The trip was traumatizing, to say the least. Our extremely generous friend flew my mom and me privately to Greenville because driving in my state was an impossibility. I likely would not have been able to get the scans without the help of this friend, and I am forever grateful.
When we got to the imaging location, I was already crying in pain. The first scan was taken while I was laying down for about 20 minutes. The loud noises and bright lights sent my head into a pounding and stabbing pain. Then it was time for the hard part, I had to sit upright and flex and extend my neck. I couldn’t do it; I kept moving and writhing in pain. The MRI tech allowed my mom to stand right in front of me and play music to distract me. I still couldn’t do it. Sharp, shooting stomach and neck pains forced me to fall onto the floor, rolling around screaming. This happened four different times, and each time we had to retake the scans. The MRI tech wanted to call an ambulance, and my mom had to convince him that this was what we anticipated and sadly “normal” for me. I gagged and dry heaved repeatedly, but there was nothing in my stomach to throw up. The MRI techs felt so bad for me and kindly stayed open late to finish my scans. To this day, I can’t believe that I was able to push through and finish the imaging. The whole way home, I vomited stomach acid. Although the trip was still excruciating, most people do not have the assistance of flying like I did to get the scans. Greenville is 3.5 hours by car from Charleston. I can’t imagine the pain they must go through whilst driving in such a sick state, feeling every bump in the road.
My traumatizing experience getting these scans reinforced my passion for raising money to get an upright MRI for MUSC and Charleston. No one should have to endure traveling while so ill and symptomatic. Dr. Patel at MUSC treats and diagnoses so many patients with spinal instabilities. Wouldn’t it be so much easier for patients and doctors if MUSC had the tool to diagnose these issues? Since the Medical University of South Carolina is looking to create a center for excellence for EDS, this tool is crucial!
Millie drove the disk with the scans to my dedicated neurosurgeon, and he examined the imaging shortly after. He called to explain there was another cervical instability in my C5, C6, and maybe C7. It was not surprising. My symptoms felt so similar to those of my craniocervical instability, nevertheless, my family and I were crushed. None of us wanted another surgery.
The next morning, Dr. Patel came to my house to evaluate me. He said he was thinking about my case on the way to a meeting and decided to come to see me since he knew it was near impossible for me to come to his clinic. Laughing, he said that he enjoys helping patients a lot more than Board meetings. He explained the issues in my cervical spine and even brought his laptop to show me my MRI study. I felt so validated and comforted. Then, he evaluated me and decided that based on my imaging and clinical presentation, surgery would be a good option.
I was not mentally prepared to undergo yet another neurosurgery, I had been home from the hospital for only a couple of weeks after my last spinal surgery, and we all knew that my body was extremely deconditioned, undernourished, and fragile. We also knew that I was getting worse on a daily basis and that I might soon pass the point of being able to tolerate surgery. Everything had progressed so quickly. My worst symptoms were migraines, neck pain, nausea, and vertigo. Also, I had ringing in my ears, blurry/hallucinogenic vision, sharp pains at the top of my stomach, joint pain, achiness, and the inability to walk or hold my head up. Although we fully trust Dr. Patel, my parents were very worried about another surgery so they sought a second opinion from a neurosurgeon at the Mayo clinic. This surgeon agreed with Dr. Patel‘s diagnosis. I was eager to start feeling better, so my vote was to press forward.
Dr. Patel admitted me to the hospital later that afternoon, and we proceeded to surgery first thing the next morning.