I’ve been putting off writing about this for a while now because I honestly prefer not thinking about the trauma associated with this hospital stay. But, I think I’m ready.

When I wrote the last update on here (early August), I was excited to be getting better hydration via the port, seeing slight improvements in PT, and grateful for the pain relief I was getting with my ketamine nasal spray. Since then, a lot has changed.

In mid-August, the pain I had previously experienced with Tethered Cord Syndrome began to return. Excruciating nerve pain in my back/legs, sharp low back pain, numbness, tingling, spasms, and incontinence plagued me. Unfortunately, the ketamine nasal spray completely stopped working, and I was hospitalized for pain control and put on a ketamine drip. 

Precautionarily, a lumbar spine MRI was done, and luckily, everything looked okay. Occult tethered cord syndrome usually can not be detected on an MRI, so a diagnosis is largely made based on clinical presentation.

At the time, my neurosurgeon was out of the country, but after describing the symptoms to him he felt confident that my spinal cord had somehow retethered. After maxing out my ketamine dose on the step-down unit, I was transferred to the ICU in hopes of controlling the pain better. I felt adamant that I did not want another spinal surgery, but even on extremely high doses of ketamine, I grew delirious with pain and realized there may be no alternative. 

My neurosurgeon offered to perform the surgery as soon as he returned, however, he advised that it may be better for me to go to Rhode Island Hospital to have the surgery done by Dr. Klinge. He suggested this because his surgical technique for tethered cord is different from what is needed for a re-tethered cord. Also, Dr. Klinge has particular expertise in this area.

Dr. Klinge uses a more invasive technique that actually removes the whole filum terminale rather than simply clipping the tethered portion. The thought of going to a different hospital in a different state was terrifying, but it looked like the smartest option. Needless to say, I was miserable and desperate for relief.

In the past, when I am hospitalized my mom usually stays with me during the day, and my dad usually spends the night since he can fall asleep easily anywhere. My parents are the perfect advocates to have when I’m too sick to think clearly. My mom has a pharmaceutical background so she understands the mechanisms of different drugs, and my dad is a hospital administrator so he understands the way hospitals run. They ensure that I am being given the right medicines and treatments and that the correct scans/tests are being run.

However, in the ICU, my parents were not allowed to be in the room with me for portions of the day or sleep in the room with me at night. Some nights, my nurse allowed one of my parents to sit in a stiff chair placed in the corner of the room. The rule was that they could not sleep all night. But most nights, my dad slept on the waiting room sofa right outside the room to be close to me. One night my mom fell asleep on the cold floor next to my bed. Although they couldn’t always be in the room with me, it was comforting to know that amidst the chaos of the hospital, they were there for me nearby.

Despite the fact that my ketamine drip was raised to insanely high amounts, my days consisted of me crying, moaning, or miserably screaming in pain. The twitching soon turned into uncontrollable convulsions. The violent shaking would go on for about 30 minutes to an hour at a time and fevers started. My episodes of convulsions looked similar to seizures, but they were not. These spasms caused trauma to my fragile cervical spine and were agonizing to my low back and legs. Jerking my neck around flared dysautonomia symptoms. 

Due to the fevers, my teeth chattered nonstop hurting my jaw. The staff would bring in a ‘bear blanket’ that would blow heat out of a tube on my body to stop the shaking. Then my temperature would increase severely and I would start to sweat. This combined with the nerve pain was hell on earth. 

Gratefully, my dedicated neurosurgeon and his team communicated with Dr. Klinge and organized for me to be transferred to Rhode Island Hospital for surgery. She agreed to fit me in for emergency surgery as long as my local neurosurgeon agreed to manage my post-op care. Everyone worked so hard to arrange this transfer, but our efforts were thwarted.

Blood cultures were taken due to the fevers and sure enough, my port was infected. I had a blood infection which meant that there was no way I could be transferred or have spinal surgery for at least another two weeks. I was stuck in a holding pattern in Charleston.