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This year marks the sixth year since I first learned the word ependymoma, and I never would have imagined the symptoms I felt early on would lead to this diagnosis.
For years ahead of my diagnosis, I had a tightness in my chest and shortness of breath that sometimes led to emergency breathing treatments in the ER. The X-rays and symptoms just led the doctors to say it was due to asthma. Two years prior to my diagnosis, I started having severe neck pain that I just shrugged off as pain associated with being on the phones all day for work and balancing the receiver on my shoulder.
By July of 2020, my symptoms started to get severe as I woke up on Saturday morning and couldn’t see out of my right eye for most of the day and needed the support of walls for balance. Even though the symptoms subsided by night, they returned again the next morning. By Monday, I was in pain from my head down to my armpits, and I felt confused and disoriented like when I had a concussion in the past and went to the ER.
Getting My Spinal MRI Results
I was given steroids in the ER for what was diagnosed at the time as either a muscle strain in my neck or slipped disc, with orders to see my primary care in a week if things were not better. By week’s end, my legs were almost too numb to drive, and my arms were aching. I ran my primary care through everything with a desperate plea to not give me more steroids or pain pills but to help me find a solution since I was feeling pretty miserable. He feared I had lupus or multiple sclerosis and sent me to a neurologist who spent 10 minutes evaluating me and hearing my symptoms and immediately sent me for an MRI.
I have never heard a doctor sound shaky, but when the neurologist called me with my results, she asked if I had spoken with the radiologist, and I shared that I had not. She explained that they detected something that they could not share until more imaging was done. This was the peak of COVID, so the wait for more imaging with the shaky and terrified voice of the neurologist made the three-week wait for imaging feel like 100 years.
Emergency Spinal Ependymoma Surgery
This time when the results of 3 MRIs to cover my entire back came in I was told a neurosurgeon had to review my results with me. I met the best doctor I will ever meet in my life, who would then give me the most terrifying news I would hear. I had an ependymoma from T2-T4, and although it was a Thursday, I had to be in surgery by Monday, as it was her belief that I would be paralyzed for life if we did not act quickly. She sat my husband and me down and explained that this would not be easy.
We spent the weekend preparing and preparing our two teenage kids. My brother drove up and visited, and my mother-in-law flew in for support. My parents, who were on the West Coast, sent support packages. We all locked in to prepare as none of us knew what to expect.
My surgery was the first that my doctor had performed like this in five years. It was a seven-hour surgery for my 2cm tumor that I playfully named “lil peanut” as a coping mechanism. I woke up and was paralyzed from the neck down.
My Spinal Ependymoma Recovery Journey
In the week I stayed in the hospital, things slowly started to come back, but there was an overwhelming buzzing sensation over my whole body. The morning after surgery, when the physical therapist had me stand, I remember asking him if he was holding me above the ground, and with a shocked expression, he explained that my feet were touching the ground and that he was only stabilizing me. I started to sob because I had no idea that my feet were touching the ground.
The occupational therapist helped me regain movement in my left hand by having me practice brushing my teeth, hair, and washing my face. I had an amazing nurse who liked to get me up for walks with my walker and gait belt. I was struggling emotionally in the hospital, and I think she knew it was healing my emotions and my body all at once. I was as excited as a puppy every time she peeked her head in and asked if I wanted to go on a walk.
On the day they were planning to release me to outpatient therapy, the therapist whispered to me that if I really wanted to go home to my children, all I had to do was make two laps of the hospital floor and get into a wooden car. I have never pushed my body harder than on the day I made the two laps and got into that wooden car.
My doctor was furious, but I did commit to three days a week in outpatient therapy for several months. I pushed there too, as I was determined to walk unaided again and get back to life as I remembered it.
Meeting Another Survivor
My story is not a story just of my own, but ironically of a friend that I met along the way. At the one-year anniversary of my laminectomy and resection, I met another woman in my community with the same surgery and condition, just twice my age and twice the size of my tumor.
We had gone to the same church and were connected through a mutual friend. I gave her the advice I had learned through reading stories on CERN’s website and from some of my own experiences along the way.
My doctor, when she learned that we had met, said that she believed that God had allowed me to be practice for this other woman’s surgery because, with her age and the size of her tumor, she wouldn’t have had the confidence of success if she had not done so well with my surgery the year prior.
To look at me today, most people have no idea that I have experienced having an ependymoma or that I still live with the symptoms from the removal of my tumor. I walk, I run, I drive, and I live a life very close to life before. I still wobble with imbalance from time to time and probably will always have 24/7 tingling from my neck to my toes, but they are happy reminders of strength and endurance.
