IT HAPPENED TO ME: Doctors Misdiagnosed a Tumor on My Spine for Two Years

Waking up post-op was a whole new world.
Publish date:
March 19, 2015
healthy, chronic pain, tumor, Back Problems

It was 2006, Bush forty-three lorded over the country, Mitt Romney was rolling out a version of the Affordable Care Act in Massachusetts, and I was an acne ridden, pudgy, know-it-all, 18-year-old vaguely aware that I had health insurance.

I could not pinpoint the exact moment when my nights became a routine of searing, stabbing pain in my back that wrapped around my rib, but it seemed to happen gradually and suddenly at the same time. This strange sensation felt like a knife being stabbed into me then twisted slowly until it stopped for a brief endorphin-filled nanosecond, and then cruelly began again.

The pain intensified only during the serenely quiet and endlessly dark nights I used to love but began to loathe. Most nights I could lull myself into an hour or two of sleep by sheer force of will. Other nights I would beg the universe to make it stop so I could please get some sleep.It was 2006, Bush forty-three lorded over the country, Mitt Romney was rolling out a version of the Affordable Care Act in Massachusetts, and I was an acne ridden, pudgy, know-it-all, 18-year-old vaguely aware that I had health insurance.

My body quickly perfected a fool proof insanity recipe: mix one part nocturnal physical pain, one part 3 a.m. loneliness, a dash of looking perfectly healthy, and finally a sprinkle of late night infomercials selling the highest-quality back pain relieving beds and you have one bat-shit crazy lady.

I finally went and saw my primary doctor, a kind, flighty woman trying to run her hugely disorganized practice. Despite her chronic disorganization, she remained a great listener, heard out my symptoms, then ordered X-rays and gave me mild muscle relaxers. When the X-rays came back normal and the muscle relaxers did nothing to help, she said I had a soft tissue injury and sent me off to a specialist.

My new doctor was a former pro-football player turned osteopath with a specialization in bio skeletal stuff (I am certain there is a big, long fancy name for that). He sent me off for all sorts of testing in claustrophobic machines.

Once the radiologist’s reports came back that I had a barely perceptible, healed fracture located on the right pedicle of vertebrae T11, my doctor diagnosed me with inflamed rib cartilage from the initial fracture and prescribed heavy pain killers and steroid injections every other week to heal it properly.

I moved into my freshman dorm with a giant bottle of Vicodin and Dilaudid. My life turned into a haze of pills, classes and work. It’s amazing what one can get used to when they are on lots of pain pills. I even got used to not caring about food. I went from a plump 164 lbs. to a gaunt 125 lbs. (a healthy weight for my build is 135-145 lbs.). As the year rolled, on I started having more pain and missing classes.

Remember, dear readers, this was 2006; the Affordable Care Act did not exist for me yet. In order for me to stay on my parents’ health insurance, I needed to be a full-time student. Since my parents could not bank roll my education or my living expenses, I had to work nearly full-time to stay in school. My university made it clear that they did not care about my medical issues by allowing professors to fail me for non-attendance even with doctors’ notes in order to teach me, “what the real world was like.”

My days became cloudier and my creative spark started to dwindle by the middle of my sophomore year. My back was not getting better; in fact the pain had dramatically increased. Fortunately, my doctor and I discovered that 5-8 extra strength Vicoprofen per day would keep me functioning.

I eventually decided that I needed more options to deal with the pain. My friends and family were starting to suspect that my pain might just be a mask for a serious addiction problem. To be honest, if I hadn’t experienced it first-hand, I would have doubted my story too. I looked perfectly normal. My skin may have been a little sallow, I may have been called skinny for the first time in my life, and my brain may not have moved as quickly as my former self, but who would know that but my closest family and friends?

I talked to my doctor and he sent me to a pain specialist for a permanent nerve block procedure. The type of block we discussed would make two inches around my waist numb for the rest of my life. I was ecstatic.

I giddily signed the papers, had a new bone scan and MRI done, then waited impatiently for my consultation. The moment finally arrived and the new doctor flew into the room without introducing himself,.

“Do you know what this is?” I remember him saying to me as he pointed to two medical words that I didn’t recognize. Before I could reply, he talked over me, “I have never seen it before, Osteoid Osteoma. Well whatever it is, I can’t do anything until it’s been taken care of. You need to make an appointment with your doctor.”

I burned those two words into my head so I could consult the oracle: Google.

“Osteoid Osteoma is a benign bone tumor characterized by being less than 1.5 cm in diameter, most frequently occur in young men and may occur in any bone of the body, most frequently around the knee but also seen in the vertebrae...Severe pain typically occurs at night, but can also be constant at any time of day. Pain tends to be relieved with NSAIDs such as ibuprofen. After the benign tumor develops further, the pain can not be alleviated with medication,” I read and re-read the Wikipedia page over and over again, hesitant to believe I had needlessly suffered for years.

When I went back to my doctor, he had my chart in hand and appeared visibly upset. I saw his dark complexion get redder and redder as he tried to calmly explain everything to me. He immediately referred me to a surgeon and when he left, still uncharacteristically upset, I could hear him say to one of the nurses to get the radiologist who had read the initial bone scan on the phone. It turns out that the radiologist misread the first scan; it wasn’t a tiny healed fracture, it was the developing tumor.

I wept joyous tears when I scheduled my surgery. Until that point I never realized how much I had questioned myself about the pain. I think that part of me believed that I had made the whole thing up. After all, how can someone be in pain for that long?

Leading up to my surgery, I openly talked about how excited I was to be sliced and diced and made into a bionic woman. It seemed to make everyone around me uncomfortable. But I did not care, I would soon be pain-free.

Waking up post-op was a whole new world. I prepared myself for a different type of back pain; pain caused by sawing off the right pedicle of vertebrae T11 and fusing my spine with bone from my hip and titanium rods and screws. I did not expect the bone graft from my hip to cause excruciating pain.

I received a walker and a white plastic back brace that looked like an ugly version of a Xena Warrior Princess outfit; complete with sculpted boobs. I will always be grateful that I refused to have any pictures of me taken in that monstrosity of a sweatbox. A bit of advice, late July-early August is NOT the time of year you want to be wearing a giant piece of plastic armor.

The hardest part for recovery wasn’t the pain, the classy granny walker, or even withdrawing from all of the pain pills. It was realizing that only three friends out of the many people I considered close to me came to visit and offer help as I tried to rebuild my life.

I can’t blame them. I had certainly transformed into someone I didn't recognize. My 20-year-old friends did not have the maturity or clarity to really understand that I needed them.

The three friends who came to visit me were shocked when they saw me weighing under 120 lbs., in a combat-ready back brace, using a walker to get around the lazy-boy I called my bed. Only one of my dearest and closest friends had any idea how to behave and stayed longer than half an hour.

A few months before the surgery, I had gotten a new terrific job as a student assistant working for state government. I was terrified to tell them about my tumor; because of my experience with my university, I genuinely believed that they would fire me. Instead, my co-workers pooled their money and sent me a beautiful bouquet of flowers. This generosity continued to surprise me as I faced the world for two months in a back brace.

When I was well enough to resume my life, but still stuck wearing the back brace, strangers would come up and ask me what had happened and how I felt. They projected their stories and worries onto me. One sweet lady even gave me a hug in Target because it upset her to see someone her daughter’s age suffering. People asked me if I had been in a car accident or fell down stairs, when I told them I had a tumor they became worried for me.

I have read articles and stories about people who hated the attention of having an injury and having strangers come talk to them. It never bothered me. It showed me something that often gets lost in our busy, egocentric lives: humanity and connectedness. These people didn’t know me, they didn’t have to say anything, but they all went out of their way to talk to me, to offer me advice, to lecture me for carrying “too many” bags of groceries, to let me know that they were sending a prayer up to whatever deity they believed in.

As this happened repeatedly, I couldn’t help but think about how different my experience was now that I had a visible issue, and not an invisible pain they couldn’t conceptualize.

As I approach my 27th birthday, I realize every day just how lucky I am that I could be cured of my chronic pain; many people suffer from chronic, invisible pain their entire life without experiencing any relief. My fusion eventually healed and at age 22 I was able to have the rods and screws removed from my spine.

I still have substantial back pain as a result of two major surgeries, but it will never compare to the agony of that tumor. This whole ordeal transformed me into a compassionate, forgiving person willing to see past people’s flaws. It solidified an unwavering belief that everyone is just doing the best that they can with the information they possess. It taught me to trust myself, and most importantly to forgive others.