In a space not bigger than a modest 2BHK flat in Pune, neurosurgeon Dr Jaydev Panchawagh runs a clinic dedicated solely to treat patients of the “deadliest pain known to mankind”. Confounded and desperate patients approach him complaining of recurrent episodes of “devastating pain”, mostly around the jaw and forehead. It feels as if a drilling machine is piercing through their head, they tell him.
“It is extremely bad,” says Anik Nanda, a patient of Panchawagh. “It makes you want to die, renders you completely hopeless and drained out. The intensity of this severe pain coupled with heavy medication made me feel like a zombie. I was in a state of constant fear and anxiety, as if an imposter was refusing to leave me.. Even in its absence, you anticipate its next strike.” He was 24 when the pain first struck him. He lived with the pain for seven years before getting treatment at Panchawagh’s clinic in 2019. “The first time it felt like an ache, but it kept getting intense and frequent, spreading all over the left side of my face in no time,” he recalls. “I became a zombie, living half a life.” He approached numerous doctors, including psychiatrists, dentists and ENT (ear, nose and throat) specialists and took many medicines, all of which failed to provide relief. The solution came through microvascular decompression (MVD) surgery, which involves opening the skull and inserting a tiny sponge between the compressing vessel and the trigeminal nerve so as to create a buffer between the two, thereby fixing the root cause of the pain and also preserving the nerve. Panchawagh has so far conducted close to 800 such surgeries.
Ankit Nanda
The pain in question is medically called trigeminal neuralgia. Nanda was not exaggerating when he said that the pain makes you want to die―trigeminal neuralgia is also known as ‘suicide disease’ because many patients develop suicidal tendencies. It is estimated that one in 15,000 to 20,000 people worldwide have trigeminal neuralgia and it is twice as common in women than in men. It usually affects people over the age of 50.
Trigeminal neuralgia involves the trigeminal nerve―the largest and most complex nerve, located at the base of the brainstem. The cranial nerve extends from near the ear and has three branches, providing sensory information to the skin, sinuses and mucous membranes in the face. It also has motor functions that help with chewing and swallowing. If this nerve is compressed by an artery or vein, it causes excruciating pain.
Dinesh Mishra, 52, experienced such pain when he had just begun to wipe his forehead with a towel after a shower. The shooting pain around the right side of his skull left him momentarily paralysed. The pain’s inexplicable nature haunted him. Before he could find an answer, the pain returned the next morning. And then it became more and more frequent, “like a mad animal that would unleash its wrath anytime, anywhere”, he tells THE WEEK over a call. It left Mishra, a mathematics professor at a government college in Gwalior, embarrassed, irritated and fed up. The frequency and intensity of the pain kept increasing to the extent that a single drop of water on his forehead would act as a trigger. A doctor in Gwalior prescribed oxcarbazepine 200mg, meant to prevent seizures. Oxcarbazepine reduced the intensity of Mishra’s pain, but did not stop its occurrence or frequency. Rather, it brought along dizziness and extreme fatigue. Eventually, his dosage was raised to 900mg.
More often, trigeminal neuralgia is often confused with dental or an ear, nose or throat pain. Nandita M.M. from Mysuru suffered for seven years before being diagnosed with trigeminal neuralgia in 2021. “It began as a pain that lasted a few seconds on the left side of the jaw and gradually began increasing. Nobody knew what it was. There was no clarity on the diagnosis,” she recalls. “Initially, I approached a dentist who gave me medicines, thinking I had a cavity that was causing the pain. But it made no difference. It was as if a monster had taken shelter inside my body and was chipping away at it slowly.”
The pain became a baggage that she could not shed. When she got married, she alerted her husband, Himanshu B.K., about her chronic condition. But he realised its intensity and magnitude only when he saw her go through it after marriage. “Life had taken an unusually difficult turn. This was something I had never heard of,” says Himanshu, a learning and development manager in the technology sector. “Because of the pain, she was never cheerful, never in the mood to go out. It affected our relationship negatively. She wasn’t very expressive about the extent of the pain. Whenever it would strike, she would simply want to be alone till the pain subsided, which would take 15 to 20 minutes. After that, I would again try to go near her, but it only made things worse. So we started sleeping in different rooms.”
Himanshu B.K.
Nandita could not bear the air conditioning, not even the wind hitting her face in a moving car. It made the left side of her face throb. Bizarre as this was, she thought having a baby might help distract her from what she had resigned to as destiny. It was after multiple visits that a dentist finally told her that it was not a dental problem.
A neurologist first put Nandita on Tegretol, an anticonvulsant that works by decreasing nerve impulses that cause seizures and pain. She began with a 100mg tablet, which was gradually increased to 900mg a day, divided into three doses of 300mg each. Such was the severity of the pain. But after a point, the medicine stopped working. “She also underwent radiofrequency ablation and took mild electric shocks twice,” says Himanshu. “She tried yoga, too, combined with anti-epilepsy tablets, but nothing worked. She lost her job. Our relationship soured.”
For patients with trigeminal neuralgia, a proper diagnosis takes years of “trial and error”. “Some doctors advise no action, saying the pain will somehow vanish on its own,” says Mishra. “Some alternative medicine practitioners suggest their own fix, but nothing works. I remember taking these pills prescribed by a homoeopathy doctor and in a fortnight the pain vanished.” The pain vanished for 22 months, but one December day, it struck like a “lightning bolt” while he was brushing his teeth. “It was so bad that I was afraid of touching my own face for the next three days,” he says. “It came back from then on, eight to ten times in a day. I would just go stiff and silent.”
The triggers can be as innocuous as the breeze from a fan or AC or wind blowing on the face, says Rajesh Yadav, whose father has trigeminal neuralgia. “One is simply unable to go on with normal life and often contemplates suicide, like my father did after putting up with this obnoxious pain for 13 long years,” he says. “He had become an insomniac and a spent man in all this time.” Rajesh’s father Rammurat was 50 when the pain first showed up. “The medication went on increasing, from one dose of 400mg a day, to three doses a day to five and even seven doses a day, and yet it made no difference,” says Rajesh. Rammurat, who resides in Allahabad, finally got the MVD surgery done last November at Panchawagh’s clinic.
Knowing how challenging it is for these patients to find the right diagnosis and a lasting cure, Panchawagh, who is also associated with Sahyadri hospital in Pune, started his own clinic for trigeminal neuralgia patients. “It all began in 2004 when this young engineer, an IITian, came to me displaying suicidal tendencies,” recalls Panchawagh. “He came to me with a bottle of insecticide in his hand. It was so filmi―he kept the bottle in front of me and said if I cannot be cured, I would rather die. He had not eaten for a week and hadn’t shaved for fear of an electric current-like pain on one side of the face. He had taken to alcohol for pain relief and, in turn, become an addict.”
That poignant incident led Panchawagh to take up MVD surgeries full-time. “I could see how the pain was literally disrupting lives and driving patients to suicide,” he says. “The problem was that most patients thought there was absolutely no cure for trigeminal neuralgia and did not even know that surgery was an option. The awareness of MVD surgery is so less among doctors that many do not advise patients correctly on taking this route. And that is where I thought I could make a difference.”
His wife, Dr Malathi Panchawagh, who is an anaesthesiologist and perioperative physician, reveals that just two weeks before THE WEEK visited the clinic, a patient from Karnataka had undergone MVD surgery. “He claimed to have suicidal thoughts, given the severity of the neuralgia that had gripped the right side of his face,” she says. “He had been told that there was no relief for this pain and that he would have to live with it. With time, he became distant from his family and the medications did not help either.”
According to Panchawagh, many patients who came to the clinic were misdiagnosed. “Some got wrongly treated by psychiatrists, while a few had their teeth removed or an unnecessary root canal done,” he says. “The point of creating a one-stop centre for trigeminal neuralgia was that patients could come here to seek credible and an almost permanent fix. This experience cannot be duplicated at any other place because here this is our main area of focus other than operating on a few tumours here and there.”
Panchawagh began recording the surgeries and also had his patients record testimonials to create more awareness about the condition and the surgery. His YouTube channel now has 19.1K subscribers. “We have classified trigeminal neuralgia into 13 types. The most common is the superior cerebellar artery compressing the trigeminal nerve and the most painful is the one in which a vein is involved,” explains Panchawagh. “We have also found cases in which there is sandwiching between three blood vessels.” Some of the equipment he uses are donated through corporate social responsibility initiatives.
Mishra underwent MVD surgery in 2020; he has now stopped taking medicines to manage his pain. “The pain disappeared and has not returned since,” he says. “I am so much more relieved. The past years were nightmarish, to say the least.”
Last year, Nandita, too, had MVD surgery. To Himanshu’s delight, Nandita is now a cheerful person. “It was as if I was seeing a new person altogether,” he says. “She used to speak so little when trigeminal neuralgia was raging through her head, but now she is chatty and energetic. It took me at least three months to get adjusted to this new person. We got a new life.”
