About 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 painkillers my compassionate primary care physician prescribed for the next decade were the answers to my prayers.
Naturally, I would require higher and higher doses of mostly opioid pain relievers over the years, until it was announced during one of my frequent visits that he could no longer prescribe my opioid pain relievers.
Due to strict regulations in Ohio regarding opioid medications, I was referred to a pain management physician, located 30 miles away, who was also a fibro patient.
He was under heavy pressure from the state of Ohio to avoid prescribing opioids, but under his care I tried nearly every available form of opioid and non-opioid pain relievers, as well as trigger point injections, all for fibromyalgia.
I would visit monthly to get refills until my husband and I moved 75 miles north of our home in Medina in Feb 2021 to be closer to our grandkids.
Shortly after we settled into our apartment, I started having muscle spasms in my mid and upper back. I have had muscle discomfort in the right rib area since 1999, but my pain got worse after the move.
The next few primary care physicians I saw were quick to write it off as part of my condition, but I was eventually referred for physical therapy by my new physician, who happened to be another 20 minutes away in the heart of the Amish community. Tuscarawas County.
But, five weeks into therapy, I began experiencing new muscle spasms that were increasingly painful and less responsive to the deep, focused massage provided during my physical therapy sessions.
During my last session, I was referred to another primary care physician affiliated with my physician and located in the nearby town of Fairlawn.
After seeing this new, young doctor a few times, he decided it wouldn’t hurt to have some MRI scans of my back to see if it would show what was causing the ongoing discomfort.
That afternoon he called me, very worried. He made sure I was seated before telling me my MRI scans showed a tumor lodged in my spinal cord. I was amazed. This was obviously very serious and not something that had ever crossed my mind.
I was referred to a neurosurgeon, who saw me within days.
During that appointment, he scheduled surgery for December 2022, which was limited to getting a biopsy, because the tumor was too deep in my spinal cord to remove.
During the surgery, the doctors nicked some of my nerves, which caused me some numbness on my left side from my armpit to my toes. Luckily I wasn’t paralysed.
I decided to proceed with a Cleveland Clinic affiliated oncologist and it was determined by biopsy that I had T4 malignant ependymoma, stage 2.
Portions of my biopsy were submitted to the Mayo Clinic and another major hospital, both confirming the diagnosis.
My spinal ependymoma is extremely rare and fortunately it grows slowly. However, I feel there is not enough research into 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 hospitals in Strongsville in March of 2022. Updated MRI scans indicated that the tumor had shrunk slightly and no additional treatment was recommended.
While I’m relieved that the latest set of MRI scans revealed that the tumor hasn’t grown or moved, I’m extremely frustrated that the syrinx, a fluid-filled cyst inside the spinal cord, is pressing on the nerves and causing further loss of feeling in my left leg and to a lesser extent my right foot.
At this point, my oncologists are all in agreement that this is a wait-and-see situation, unless something dramatic happens, which would likely result in extreme loss of sensation in one or both legs and loss of bladder and bowel control.
It’s strange to think back on everything that has happened to me since we moved to Medina, but I strongly believe that I’m in the right place and that my faith and my profession as an advocate for the less fortunate have prepared me to stand up for myself after I retire .
If it were within my power to make a change to our healthcare system, I would find a way to fit inexpensive MRI’s into my monthly checkups.
I am scared that any surgery, growth or movement of this tumor could paralyze me, but from what the oncologists have told me, there are no other options right now.
My look at the available information has revealed what I consider minimal research done on adult spinal cord ependymomas.
While I appreciate that research dollars are better spent on cancers that affect large numbers of people, I hope to raise awareness and funding for this type of research.
Michele Lucas lives in Ohio with her family.
All opinions expressed in this article are the author’s own.
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