AN UNFORTUNATE STORY OF MISDIAGNOSIS … or How I Learned the Importance of Self-Advocacy in…
By: Theresa Derr
Tags: Misdiagnosis, Medical, Healthcare, Self Advocacy

AN UNFORTUNATE STORY OF MISDIAGNOSIS … or How I Learned the Importance of Self-Advocacy in Healthcare

On April 26th of this year, I woke up to a strange physical ailment … my right foot was dropping heavily to the ground when I was walking. With a little more investigation I realized I had numbness extending from my outer knee along the shin, then across the top of my foot. I couldn’t flex my foot, and I couldn’t raise my toes.

I thought it was a fluke, so I let it go on for a few days. The following Monday I saw my primary care physician (PCP). She is a PA, and I consider her to be absolutely brilliant … I have always felt I received stellar care from her.

It was a short exam, with her concluding that I had a condition known as foot drop or drop foot. She explained that this is caused by protrusions at L5S1, so she ordered a lumbar spine MRI. During the exam, she did a few rudimentary tests of my strength, but did not thoroughly do the kinds of strength checks commonly used to diagnose spinal issues. I believe she jumped to a conclusion, and determined that I had developed a lumbar spine problem … ignoring many other possibilities.

I survived the MRI (I’m incredibly claustrophobic, so I opted for the open-sided variety, which was still very uncomfortable). When my PCP called with results, she informed me that the MRI did indeed provide evidence of a protrusion at L5S1. After getting a prescription for a round of medrol, I was referred to her practice’s physiatrist.

Two weeks later I drove to the physiatrist’s office. I should have listened to my body: I had a panic attack as I walked in. Somehow I knew this was the wrong person to see and the wrong course of treatment. But I stayed for the examination. The physiatrist did run a few more tests of my strength, and I passed them all … which was an indicator I had no spine problem. In addition, I was experiencing no pain whatsoever, and had not experienced pain since the onset of the symptoms. The doctor was puzzled, but adamantly informed me that nonetheless, I had a bulging disc, which would be resolved with another round of medrol and physical therapy. At no point did I see pictures from my MRI, nor did I see the MRI report. These were my initial errors, and I take full responsibility for trusting my physicians wholeheartedly. I have learned my lesson and this will not happen again.

My physical therapy experience was a bit of a clusterf**k. I was working with an experienced PT and an intern, who collaboratively were trying to determine the best course of treatment. They, too, did not read my MRI report very carefully, and they also concluded I had a spinal problem. The office had a “30 minutes in and 30 minutes out” policy, and I felt rushed in and rushed out. As kind as the two therapists were, they were baffled at what to do with me, and just as baffled at why nothing was improving.

Around that time, I started to have nerve tingles and cramping in my lower leg at night. My doctor sent a prescription for muscle relaxers, but I chose not to take them after googling the side affects! The pain only happened at night, and so I would get up and walk around, do child’s pose for long stretches of time, and ice. This would resolve it, and I would go back to sleep. This lasted about three weeks.

After three weeks of treatment, I had an emotional breakdown in my PT appointment. Nothing was changing. I had no dorsal flexion, and no strength in my big toe. I could walk short distances, but still could not ride my bike because my right foot would fall off the pedals. During the appointment, one of the PTs suggested I get a referral for an AFO (foot brace) designed for drop foot. That was the greatest gift of my round of physical therapy.

I had my followup appointment with the physiatrist a few days later. All he did was check my foot strength, and there was none … so he sent in a referral for a cortisone injection in my back to relieve the pressure the bulging disc was putting on the nerve. But was that really the problem? I asked him for a copy of my MRI report, and also for the referral for the AFO, which he did take care of.

When I returned home, I spoke to one of my neighbors, who suggested I go see her chiropractor. I had never been to a chiropractor before, so I was hesitant, but I was able to schedule an appointment for the next morning. He looked over my MRI report and was appalled … told me in no uncertain terms that the report did NOT indicate any spinal issues. He did extensive diagnostic strength testing, and told me my strength was exceptional, and there was no sign of spinal issues. He believed I had been misdiagnosed, and that I had nerve issues in my shin — possibly just blocked fascia — and he performed Graston technique on my shin.

Armed with this information, I made the decision to go see a spinal surgeon. Miraculously, I was able to get an appointment for the next week. In the meantime, I was fitted for the AFO, I had another Graston technique treatment, and I asked the PT to review the MRI report, as clearly I did not have a spinal issue. And I canceled my appointment for the cortisone injection.

The appointment with the spinal surgeon was a game changer. He was APPALLED that I still had a numb foot after 8 weeks and no one had ordered a nerve study. He said protocol indicates such testing should occur 4 weeks in when there is no improvement. He also took xrays of my spine, and showed me the pictures side by side with the MRI … and this was the first time I had seen the MRI images. He assured me my spine has some minor issues typical for a very active 61-year-old woman, but nothing of concern. He said my drop foot was the result of pressure on the nerves in my lower leg.

He ordered an EMG test, and the testing center informed me I could not get in for the procedure for three weeks. When I called the spinal surgeon’s office to report this delay, the spinal surgeon found someone to see me the next morning. It was a dreadfully painful test, and I had no idea what I was in for. I cried through most of it, but the doctor assured me we were finding answers, and then recommended an MRI of my lower leg.

Again, no one could get me in quickly, but the surgeon intervened and my MRI was scheduled for only two business days later. I was then referred to an orthopedic center to see a nerve specialist. My appointment was set for ten days later.

Unfortunately, there was one more bump in the road. My ortho appointment was set up for the wrong doctor. I went in to see him, fully ready to get answers, and he said “I’m the foot guy — you need to see the nerve guy.” I burst into tears because I had just about had enough of this craziness. When I left his office to go to the appointment schedulers, I was informed the nerve guy couldn’t see me for over a week. More tears. I kindly explained this had been going on since April 26th … they were compassionate in their response, and told me to email the assistant to this other doctor and hopefully I would get in sooner.

Miracle of miracles, I emailed and shared my story briefly, and was able to see the nerve specialist (who is officially their hand surgeon) the next day. He showed me the MRI and I had a massive cyst in my shin pressing against the nerve … thus causing the drop foot. It was never, ever about my lumbar spine … all along, my problems had been caused by a cyst.

My surgery was five days later. It was quick, it was efficient, and now it is my job to recover. The cyst was removed, and the pressure on the nerves was released. I have some very gnarly photographs of the procedure, and in the doctor’s words, I had one “big ol’ cyst.”

Between May 3rd and June 30th, I racked up over $2500 in out-of-pocket medical bills. My deductible started all over on July 1st (this is typical of teachers and health insurance), so my surgery will cost all $4000 of my out of pocket max for the new coverage year.

This could have had a very different direction and outcome if I had questioned my PCP’s instinctive conclusion that I had a lumbar spine issue. I should have gotten more information about the physiatrist, and insisted I see a spinal expert instead. I should have asked to see my MRI images in my initial appointment, so that I could see proof of this spinal issue. I also should have gotten my MRI report in that initial appointment, and then I would have seen that there was nothing in that report conclusively supporting the diagnosis of an L5S1 lumbar protrusion. It simply wasn’t there.

It has been 5 days since my surgery. The nerves in my right leg are still a little traumatized, but the numbness is slowly improving. I have my AFO, and I will be relying on it for quite a while until my foot strength returns. I think I am most looking forward to being able to flex my right foot and toes … I never knew how much I enjoyed that simple movement until it was taken away from me. I am fortunate that I have a very strong and resilient body due to years of cycling, walking, running, and daily yoga, so the doctor expects a full recovery. But I have learned a very expensive lesson about healthcare, and the importance of self-advocacy, asking questions, and trusting your gut. Please don’t make the same mistakes as I did … I don’t plan on repeating any of them.