I Felt a Strange Pain in My Side. Scans Made a Rare Discovery

Around two decades ago, I was diagnosed with fibromyalgia syndrome (FMS), a long-term condition that causes pain all over my body.

I thought the myriad of pain drugs, prescribed by my very compassionate, female primary care physician for the next decade, were the answers to my prayers.

Naturally, I would require higher and higher doses of primarily opioid pain relief over the years, until it was announced during one of my frequent visits that she could no longer prescribe my pain relief opioids.

Due to the strict regulations in Ohio surrounding opioid medication, I was referred to a specialist pain management physician, located 30 miles away, who was also a fibro sufferer.

He was under a great deal of pressure from the state of Ohio to avoid prescribing opioids, but under his care I tried out just about every available form of opioid and non-opioid pain medication, plus trigger point injections, all for fibromyalgia.

I would visit on a monthly basis in order to receive refills until my husband and I moved 75 miles north of our home to Medina in February 2021 to be closer to our grandchildren.

Shortly after we were settled into our apartment, I started having muscle spasms in my middle and upper back. I had experienced discomfort in the muscles on my right rib area since 1999, but my pain worsened after the move.

The next few primary care doctors I saw were quick to write that off as part of my condition, but eventually, I was referred for physical therapy from my new physician, who was located an additional 20 minutes away in the heart of Tuscarawas County's Amish community.

But, five weeks after starting therapy, I began experiencing new muscle spasms that were increasingly painful and less responsive to the deep, targeted massage provided during my physical therapy sessions.

During my last session, I was referred to another primary care physician who was affiliated with my healthcare provider and located in the neighboring city of Fairlawn.

After seeing this new, young doctor a couple of times, he decided that it wouldn't hurt to have some MRI scans done of my back to see if it would show what was causing the ongoing discomfort.

That afternoon he called me, very concerned. He made sure I was sitting down before telling me that my MRI scans showed a tumor lodged in my spinal cord. I was stunned. This was obviously very serious and not something that had ever crossed my mind.

I was referred to a neurosurgeon, who saw me within a matter of a few days.

During that appointment, he scheduled surgery for December 2022, which was limited to obtaining a biopsy, because the tumor was lodged too deeply in my spinal cord to remove.

During the surgery, doctors nicked a few of my nerves, which caused some numbness on my left side from my armpit down to the tips of my toes. Fortunately, I wasn't paralyzed.

I decided to proceed with an oncologist affiliated with the Cleveland Clinic and it was determined from the biopsy that I had a T4, stage 2 malignant ependymoma.

Portions of my biopsy were submitted to the Mayo Clinic and one other major hospital, with both confirming the diagnosis.

My spinal ependymoma is extremely rare, and fortunately slow growing. However, I feel there is not enough research about this form of cancer, and little support available for those in my particular situation.

I had six weeks of radiation on the tumor at one of the clinic's hospitals in Strongsville in March of 2022. Updated MRI scans indicated that the tumor has shrunk somewhat, and additional treatment was not recommended.

While I am relieved that the latest set of MRIs revealed the tumor hasn't grown or moved, I am extremely frustrated because the syrinx—a fluid-filled cyst inside the spinal cord—is pressing on nerves and causing additional loss of sensation in my left leg and, to a lesser degree, in my right foot.

At this point, my oncologists have all agreed that this is a watch-and-wait situation, unless something dramatic happens, which would probably involve extreme loss of sensation in one or both legs and loss of bladder and bowel control.

It's strange to reflect back on all that's happened to me since we moved to Medina, but I firmly believe that I am in the right place, and that my faith and profession as an advocate for the less fortunate prepared me to advocate for myself after I retired.

If it were within my power to make a change to our healthcare system, I would find a way to make inexpensive MRIs part of monthly checkups.

I am frightened by the possibility that any surgery, growth or movement of this tumor could paralyze me, but from what the oncologists have told me, there aren't any other options right now.

My own look at the available information has revealed what I consider to be minimal research being done on adult spinal cord ependymomas.

While I appreciate that research dollars are best spent on cancers that affect a large number of people, I hope to raise awareness and funding for this kind of research.

Michele Lucas lives in Ohio with her family.

All views expressed in this article are the author's own.

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