A few weeks back, the department of neurosurgery at Changhai Hospital in China published a research paper titled, 'Altered Brain Structure In Hemifacial Spasm Patients: A Multimodal Brain Structure Study'. They found that there are altered brain structures in such patients—that is, over a period of time, there is a reduction in the volume in the thalamus and a compensatory volume increase in the cerebellum inside the brain. Hemifacial spasms (HFS) is a chronic condition that affects people in various age groups. THE WEEK spoke to one such patient, Varsha Atre, who suffered from HFS in her 30s but found that there was a cure to it, only about a decade later.
She still recalls that embarrassing moment from 2010. A young woman of 30 then, Varsha was engaged in an animated conversation with a male friend from her workplace when she winked, that too, multiple times all at once, lasting for a few seconds. She was mortified; it was awkward, ill-timed, completely involuntary and clearly sent out the wrong message. She had to convince her friend that it was her eye, not her. She immediately went to the washroom, splashed water on the eyes and had momentary relief. It was unlike anything she had experienced before. And then, it happened again. This time, thankfully, she was at home, having dinner with family. They called it a good omen; a sign that something good was about to happen.
Varsha remained in perpetual anticipation of 'something good' that was to happen to her, over a span of years, even as the frequency of the twitching increased to multiple times a day, leaving her drained out. She was afraid to venture out of the house, she resigned from her job, and from a life worth living. Depression set in. She preferred being alone, and almost stopped interacting, especially with men. In 4-5 years, the twitching had spread to her right cheek and gradually to the right side of her face. It was taking a debilitating turn. She could barely chew food, brush her teeth or even speak normally because of the discomfort. It was mostly painless but highly disgraceful and upsetting. The entire right side of the face would droop and the eye would close completely, mid-conversation. She had no control over it. A smart and enterprising Varsha, who used to drive a school van and then started her own catering business, was now feeling sorry for herself. She tried ayurveda, homeopathy, home remedies and two botox injections involving 25 pricks each on the eyelid in a gap of six months, which only worsened her condition.
At 44, a decade after the first symptoms appeared, Varsha came to know that treatment was available. Until then, she had not even known there was a term for her condition: Hemifacial spasms. A blood vessel touching a facial nerve causes the sudden jerks. It begins as contractions in the eyelid and then move on to the cheek and mouth on the same side of the face. At first, hemifacial spasms come and go. But, over months to years, they become regular.
The one solution that Varsha said yes to almost instantaneously is the MVD or the microvascular decompression surgery—a minimally invasive procedure that relieves pressure on the facial nerve by making a small incision in the back of the head, behind the ear and then inserting a Teflon sponge between the artery (that is putting the pressure on the nerve) and the facial nerve. This relieves the pressure that causes muscle spasms. The best part is that MVD is a proven surgery to treat hemifacial spasm. It is the only known permanent solution because it directly relieves the pressure causing muscle spasms. Other treatment options like Botox and medications work to control the symptoms but MVD surgery works to correct the root cause of hemifacial spasm.
Varsha, who got the procedure done by Pune-based neurosurgeon Dr Jaydev Panchawagh, now looks cheerful and bright as she spoke to THE WEEK on a pleasant afternoon. "I feel like looking straight into people's eyes proudly and happily. I really am a different person now," she said, smiling delightfully, with her daughter by her side. Her only regret is the time she lost in search of a treatment. Since hemifacial spasm is rare and often misdiagnosed, MVD surgery as a treatment option is not too well known. "Had this awareness come earlier that a surgery was available for these spasms, I think I would not have lost my prime 30s. I could have done so much more with my life," said the mother of two grown-up daughters.
Varsha has gotten her enterprising self back. She's now heading a day-care facility and is also leading the catering service. What's more? She does not look down anymore when talking to men.