Category Archives for Misdiagnosis

When Hoofbeats Mean Zebras

For some time I’ve been having a recurring dream – actually, it’s now a live waking vision – that I make an appointment to see the doctor who started me on my journey into chronic pain. She no longer works at the hospital where I was first treated for, and ignored when I described, my severe pelvic pain so I would need to do some detective work to track her down. Why would I want to exert any effort to see her you might be wondering? Well, when someone irreversibly changes your life for the worst you get an overwhelming desire to confront them to see the look on their face when you recount for them the hours, days, and months of endless pain you now live with because of their avoidable mistakes.

I believe I deserve an opportunity to tell her how disappointing it was – and continues to be for me – that a female physician was so dismissive of me when I described my pelvic pain symptoms. During my hospitalization, I tried, unsuccessfully, to share my medical history, and family health history, with her on the off chance there might be a relevant connection to something from my past or genetic ancestry. I want her to understand that just because a patient presents some symptoms for a particular illness that they could still very well have something else, and that the old saying of “when you hear hoofbeats, think of horses not zebras“ isn’t always the right medical diagnostic rule to follow.

The results from the first abdominal scans I had were unusual and shocked the Emergency Room doctors, but a lack of expertise meant I had to receive treatment elsewhere. However, once they admitted me to the second hospital the attending doctors seemed to be on a mission to contain my illness to a textbook diagnosis that was more common, predictable, and manageable, which over time proved to be wrong. The diagnosis wasn’t right, yet this doctor continued to work from her flawed viewpoint, while my health deteriorated with each passing day. Oddly, even with my physical decline and increasing pain, she was certain I wouldn’t need to rest for longer than a week after my release from the hospital before returning to work. I want her to know how wrong she was about that too because it’s been almost three years and I’m not any closer to going back to work and no one can see if or when that might be possible for me.

I also I want her to know how wrong she was for under-prescribing pain medication for my pain management and telling me that if I had a pain flare up outside her hospital clinic hours to go the Emergency Room where I could receive additional support. The Emergency Room staff and doctors at that hospital were not supportive. At best, during each of my pain-filled late night visits they thought I was there seeking more opioid-based painkillers and did the bare minimum to treat my pain. Once they read my hospital clinic chart, they didn’t order any more tests or investigate alternative diagnoses; they simply hooked me up to an IV to boost the effects of the painkillers. They then wrote more prescriptions for the same dose of those ineffective pain medications; and told me to go back to the hospital clinic to see the same doctor who was failing to manage my pain because she didn’t believe what she had incorrectly diagnosed could cause so much pain. Poor pain management forced my nervous system into overdrive to respond to the onslaught of pain messages from my body. Now, even with the higher doses of pain medications I take, my nervous system can’t do enough to calm my body or ease the pain.

Because of all of this, in my recurring vision , I am angry. However, the doctor is unrepentant and she falls back on the cliché that medicine isn’t an exact science. I imagine standing in front of her, while trying to ignore my intense pain; bewildered that she refuses to accept any responsibility for the errors that brought such significant changes to my life. Thankfully, my anger is broken by a moment of clarity when I realize that there is nothing for me to gain from such a meeting. Nor do I believe that someone who carries herself through the world with an air of superiority would gain from it. As this vision fades, I see the next person in a line of this doctor’s past patients waiting to tell her similar things, but I know she won’t hear them either. I walk away thankful that I found doctors who are willing to listen to me and understand that sometimes when you hear hoofbeats they are zebras.

 

Joni Mitchell – Both Sides, Now

Where It All Started Going Wrong

Exactly two years ago tomorrow, on a beautiful summer afternoon, I suddenly felt intense pain in my lower abdomen. It was such incredible pain; I could barely breathe. My body shook uncontrollably. I could not stand up straight and ended up on my bed in the fetal position.

I was fortunate not to be alone. I had plans with a friend who had arrived at my place about thirty minutes before the worst of the pain set in. I was fortunate because my friend didn’t panic. He called our local telemedicine service to speak to a nurse. After working through a checklist of questions, she transferred him to 911 because I was showing signs of going into shock. He elevated my legs as instructed while we waited for the ambulance to arrive, and kept talking to me to keep me alert.

Firefighters arrived ahead of the paramedics. They went through the same checklist the nurse had. Then they tried to talk me through getting my breathing under control; it was shallow because breathing deeply hurt. When the paramedics showed up, they had a minor struggle trying to get the stretcher through my front door. The firefighters pushed furniture out of the way but they still couldn’t get it into my bedroom, which was fine with me because it was already crowed enough with three firefighters, two paramedics and my friend all standing around.

The paramedics examined me while I lay on my bed. They took my vital signs. I had a mild fever, but after going through their checklist – which meant confirming I wasn’t pregnant for the third time in about twenty minutes – they partially carried me to the stretcher. Just having my feet touch the floor caused more pain to shoot through my abdomen. I wanted to pass out, but the paramedics kept talking to me to keep me conscious. I wish they hadn’t. Being rolled to the ambulance on the stretcher was agony and the bumpy drive to the hospital was even worse.

It didn’t take long for me to go through triage in the emergency room. Lower abdominal pain on the scale I was experiencing gets you seen by a doctor quickly. I struggled to get undressed and into the hospital gown. The nurse caring for me immediately suggested that I might need a strong painkiller to help me. I refused. The doctor came to see me and tried to convince me that a dose of Oxycodone would help reduce the pain so she could examine me. I still refused. I told the doctor that I wanted to have a clear head so I could clearly communicate with her. She relented but gave me an intravenous anti-inflammatory medication to take the edge off my pain so she could touch my abdomen. However, when she started the examination I almost wished I had accepted the Oxycodone because the pain was excruciating – picture cartoons where cats are so scared they jump up to the ceiling and hang on for dear life.

The doctor sent me for a series of ultrasounds (full abdominal and trans-vaginal) after her brief examination so she could rule out appendicitis, a burst ovarian cyst, or ovarian torsion – which just means a twisted ovary – as the causes for my pain. When the ultrasound results came back, she was surprised, which made me nervous. She said the imaging revealed something unexpected that she hadn’t even thought of. According to the ultrasound results, I had a tubo-ovarian abscess that measured 9cm x 3cm. If you’d ever met me, you wouldn’t believe there was enough space for anything but my vital organs in my lower abdomen; or that I wouldn’t have felt something that size before. I guess the upside was she didn’t tell me I was pregnant because that would have been truly unexpected.

Unfortunately, that doctor’s diagnosis was wrong and it would be the basis for me to receive the wrong medical treatments and incorrect level of pain management for almost a year.

 

Ray Charles – I Don’t Need No Doctor