The 'Mystery Cure' That Relieved the Symptoms My Doctor Didn't Understand

When a doctor or a surgeon finds a structural abnormality, fixes it and the patient gets better, that sounds like a success story. But is it really a success story when the doctor can’t explain how the structural abnormality could result in the surprising symptoms experienced by the patient? Wouldn’t it be a better success if the solution didn’t raise more questions than it answered?

If you are struggling with an undiagnosed condition, I can sympathize, empathize and all the other -pathizes. I went 22 years with a strange malady. I experienced intermittent “episodes” (the only word used by my doctors) of trouble talking, walking and semi-voluntary movements. More descriptive words might include non-epileptic seizures (NES) or possibly pseudo-seizures, since the episodes don’t register on an EEG machine like typical seizures. If the “episode” was severe enough, I found it difficult to form words in my mind. Neurologists called my problem psychosomatic – also, psychogenic, conversion and functional neurological disorder. Psychiatrists called it PTSD, anxiety and depression. I took a variety of medications and spoke freely in therapy, but nothing helped. Sleeping was difficult because symptoms would get worse when I laid down. I woke up feeling unrefreshed but glad to get in the vertical position. Naps were a necessity.

 

Then I began to notice I could trigger symptoms by pressing on various parts of my body, including my abdomen, my shoulder, my jaw, on top of my head (neck traction) and also the side of my neck. Turning my head to the right was also a trigger, as was a pelvic tilt. I could relieve symptoms by opening my jaw and sticking out my tongue. The Jendrassik maneuver also helped.

Someone on the internet suggested I rule out Eagle’s syndrome (ES), so I went to a skull-base and neck surgeon, who did rule out ES. But he was intrigued by something he saw in the video camera of my throat. He thought he saw something poking into my throat when I swallowed, something much lower than where ES would show up. He injected me with lidocaine to numb the area, and immediately, I noticed an improvement because I couldn’t trigger my speech trouble. I could lie down without trouble talking or thinking.

The surgeon was very frank, saying he didn’t understand the neurological symptoms, but the fact that lying down was a trigger made sense due to the proximity to the hyoid bone, which “floats” and shifts position when people lie down. He thought he would find something abnormal if he opened me up and asked my permission for him to do so, but said he couldn’t promise me it would make any difference with my symptoms. He’d never heard of symptoms like mine.

We talked about uncertainty and how we both cope with doubt. I shared my decades-long doubts about my sanity, and he shared his own understanding of the limits of medicine. I agreed to the surgery because I couldn’t overlook the evidence on the video camera and my good response to the lidocaine. I hated being unique, but wasn’t going to let my uniqueness stop me from doing what seemed right.

On the table, the surgeon found a structural abnormality on the left superior cornu of my thyroid cartilage: i.e. my voice box. The tendon that was supposed to be attached was dislodged and the cornu (sharp horn) was bent inward, poking into my throat. The surgeon removed two centimeters of this bent cartilage. Waking up from surgery, I noticed an immediate improvement when lying down, in that I could still maintain the ability to speak. However, I was much more sensitive to bumps and jarring. Swallowing food often triggered “episodes.” A long, slow year later, I am much improved. To be fair, I did begin taking an antidepressant in that year, and I do wonder if that was a factor in my improvement, but I can’t escape the fact that the surgery had such an immediate effect, both for good and for ill. I feel sure I found a big piece of the puzzle, if not the whole picture. (Did I just mix two metaphors?)

I know there are many conditions that are challenging to diagnose. For example, the time necessary to diagnose multiple sclerosis can be many years. Lupus is also difficult to recognize. But I had no idea there existed a condition where doctors could find and correct a problem, a problem that existed for 22 years, and still have no idea how the body and mind could be so affected! We truly are living in a time of mystery and wonder!

I know there will be many who doubt my story, but I swear it is true. People, friends, family and doctors have all questioned my mental state. A doctor came right out and asked if I was faking this. I gave him a direct answer: no, I am not making this up. I don’t think anyone questions my sincerity and willingness to consider all options. Assuming good will, good motives and good intentions are not enough, I think the fact that I’ve had a good outcome adds up to a reasonably good approximation of the truth. I’ve endured a long illness and come through to a better state. And isn’t that what matters most? I’ll leave others to answer the whys and what fors. I’m now going to turn my attention to other matters, but if a medical scientist ever wants to look me up and offer an explanation, I’d be a receptive listener. Call me. We’ll do lunch.

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Thinkstock photo via monkeybusinessimages.