Misdiagnosed and Refused Tests: The Early Days of My Chronic Pain Journey

By: Loolwa Khazzoom, Founder, Dancing with Pain

September 6th, 2009 • Patient AdvocacyPrint Print

It was Fall 1997. I had just been in a hit & run, head-on car collision. I was 27 years old. Following the car crash, I had neck pain. I went to the office of my primary care physician for an exam. He did a number of external tests – asking me to move this way and that. Based on those tests alone, he concluded that I had soft tissue damage. I remember finding it odd to conclude what I did or didn’t have based on a handful of tests resting on the judgment of the naked eye.

I requested an X-ray, but the doctor said that an X-ray was pointless, because my injury was soft-tissue in nature, not structural. Therefore, he said, the X-ray would show nothing. The doctor did not inform me that there were other tests that could detect soft tissue damage – such as an MRI. I was left with the impression that in fact no diagnostic mechanisms existed for that kind of thing.

At the time, I did not have the life experience to know to push past what a doctor said and find out what other options were available. I had no inkling of the world beyond. All I knew was what the doctor told me.

At that time in my life, I also was wary of X-rays, because as I understood it, their radiation could put me in danger of cancer. Coupled with the doctor’s determination that an X-ray would not reveal any information, the X-ray idea did not seem worth the risk involved; so I did not push for that option.

Still, something didn’t feel right. It seemed to me that there must be something that all our science and medicine could do to diagnose and treat me.

As the weeks and months passed, I experienced spasms in different sections of my spine. Starting from the top section of my spine and working its way down, an area would pulsate uncomfortably, then freeze. Following each incident, that area would stay frozen, not go back into alignment, and suddenly be in unrelenting, chronic pain.

Over time, I also began to have difficulty walking. I did not have any pain in my legs, and with my limited knowledge at that time, it did not make sense to me that I could have trouble walking when my legs were fine. Regardless, I reported everything to my doctor.

I made repeat visits in the months and years following the car crash. In the initial period of my complaints, the doctor said to me, and I quote, “It takes time for soft tissue damage to heal.” Wait it out. Be patient. You’ll be fine.

As time slipped by, however, and as I increasingly lost my physical power and energy, the doctor changed his tune, declaring, “There is only so much one can heal from this kind of thing.” There is nothing we can do. Live with it.

I generally do not reveal in my blog the names of health care practitioners. Given, however, that this man is single-handedly accountable for setting in motion the chain reaction of events that made my late twenties and thirties a living hell; given that this man in effect undermined every aspect of my health and wellness through today, I have to share the irony of his name:

Wellman.



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