The Mathematician Who Diagnosed Himself
In this piece Diagnosing Trigeminal Neuralgia: A Patient Who Noticed What Doctors Missed Living With Trigeminal Neuralgia: Four Years Before Surgery What Trigeminal Neuralgia Patients Teach Me That No Textbook Can Trigeminal Neuralgia Surgery: A Mathematician’s Approach to Risk Life After Trigeminal Neuralgia Surgery: Six Years On Trigeminal Neuralgia Awareness: Why I Keep Telling This Story I operated on DKM in February 2020. When he sat across from me again this July — over six years later — I noticed something I see in most operated patients. Confidence in body movements, knowing that a pain attack is not around the corner. His face was calm. It had always been calm. Even back when he was describing his pain to me for the first time, before surgery. What has changed is everything underneath that calm. Before surgery, that stillness was braced. Waiting for pain to come any moment. A person living with Trigeminal Neuralgia learns to carry a kind of low-grade anticipation everywhere — will the fan turn on, will someone brush past my face, will I need to brush my teeth soon. Will the pain come when I chew or open my mouth? What if I have to talk? That tension doesn’t always show up in what a patient says. It shows up in how they hold themselves. This July, that tension simply wasn’t there. He sat the way a person sits when their body has genuinely stopped expecting pain. I’ve learned to watch for that shift over the years, and it’s one of the more honest signs of a good outcome — more honest, sometimes, than what patients say out loud. He’s been back to see me twice since his surgery. Not for follow-up in the clinical sense — just to say hello. Both times, he’s asked to sit in on my OPD for a while and talk to patients who are currently living with Trigeminal Neuralgia, sharing what it was like for him, before and after. He offers to do this as his social responsibility of spreading awareness and supporting diagnosed patients. How Acromegaly Hides in Plain Sight The body changes too gradual to notice Acromegaly is a disease of slowness. It is caused, in almost every case, by a small benign tumour of the pituitary gland that pours out too much growth hormone. The hormone does its work by fractions. A millimetre here. A half-size there. The face you meet each morning is never very different from the face you met the morning before, and so the change escapes you. By the time it announces itself, it has usually been at work for years. Across large studies, the gap between the first sign of acromegaly and the diagnosis runs to seven, eight, sometimes ten years. Diagnosing Trigeminal Neuralgia: A Patient Who Noticed What Doctors Missed DKM is a professor of mathematics at a prestigious university in North India. I think that detail matters, because of how precisely he arrived at his own diagnosis — well before any doctor was willing to commit to it. He arrived, having filtered it correctly. It began with a strange, brief electric flash across his forehead while drying himself with a towel after a bath. Most people would let a sensation like that pass. He noticed it, dismissed it once, and then paid close attention when it happened again in exactly the same way, doing exactly the same thing. Most doctors who are otherwise familiar with this disease may tend to overlook an occasional, brief, electric-shock-like pain — because it’s occasional, because it passes quickly, because on its own it doesn’t look alarming. What an intelligent, observant patient notices, and what a medical consultation may often miss, is that this pain is different in character from ordinary pain, and that it’s unusual precisely because it follows specific, repeatable triggers. A towel on the forehead. Cold water. A breeze. That pattern is the disease announcing itself, long before it becomes impossible to ignore. DKM saw three doctors before anyone would use the words Trigeminal Neuralgia. He’d already found the term himself by then, matched his own symptoms against the clinical description, and was, in effect, waiting for a doctor to catch up to a conclusion he’d already reasoned his way to. That’s not something I see often. Most patients arrive overwhelmed by conflicting information. He arrived, having filtered it correctly. Living With Trigeminal Neuralgia: Four Years Before Surgery The four years between his first symptom and his surgery tell you more about this disease than any textbook does. Like standing beside someone welding — except the electrode was inside his own head. He kept teaching through all of it. In his city, winters are harsh — temperatures can fall to two or three degrees Celsius — and cold is one of the more reliable triggers for this kind of pain, which is why winter tends to be the hardest season for almost every Trigeminal Neuralgia patient I treat, not just him. He wore two caps and wrapped a wool band across his forehead to get through those months. He bathed every day knowing, with total certainty, that the moment water touched his forehead, the pain was coming. He did it anyway, because there wasn’t another option. His oxcarbazepine daily dose climbed from 200mg to 1,200mg over the course of a year as the disease progressed, controlling the pain somewhat, but leaving him with a constant dull heaviness that never fully lifted. He described the pain itself in a way that still gives me goosebumps: like standing beside someone welding — the electrode sparking against metal — except the electrode was inside his own head. Three to five seconds of it, he told me, but so intense that anything longer would be unsurvivable. What Trigeminal Neuralgia Patients Teach Me That No Textbook Can My training in neurosurgery, and MVD surgery, taught me the pathophysiology of Trigeminal Neuralgia — the symptoms, the vascular compression, the pain pathways, the mechanism behind why decompression works. It
