Hemifacial Spasms Testimonials

Let us understand what the word Hemifacial spasm means. Hemi means half, facial means related to the face, and spasm means repeated and uncontrolled contraction of the muscles. In this disease, patients suffer from contraction of one side of the face, which they are not able to control. So when such afflicted persons begin a conversation, contraction of one side of the face occurs, which results in winking of the eye on that side of the face. It may appear to the observer that the person is winking their eye! Initially, the eye and only a part of the face contracts involuntarily, and as the disease progresses the entire half of the face may get pulled to one side. Generally, these symptoms initially begin when the patient is stressed or is in a conversation. Later, it occurs randomly, at any time.

For example, a student who has gone for an interview and is under stress to perform well could manifest these symptoms of Hemifacial spasm. Or a secretary in a company dealing with a new client could have enhanced stress levels which trigger the hemifacial spasm.

In fact, any occasion which causes stress to a person where they become conscious of their facial expressions like social interaction could trigger Hemifacial spasms.

This is a socially troublesome disease. The patient feels very awkward talking to others and tries to avoid face-to-face interaction. They start avoiding social contacts and their professional life may also suffer. Others may not understand why the patient speaks peculiarly. Over a period of time, the patient becomes self-conscious and starts avoiding social interactions. This may affect his personality as well, and there is a danger of losing one’s job due to this.

This is the story of a patient who came to our centre. She was a secretary in a Mumbai-based company. and she suffered from Hemifacial Spasms. This lady had a great sense of humour. She had learned to live with the disease without much frustration. After her surgery, she said to me, “Doctor, let me tell you…just imagine….I am a secretary, I am sitting at my table, and  a well-dressed visitor comes up to me and asks that he wants to meet Mr Roy…..and in reply if I winked at him while pointing in the direction of Mr Roy’s cabin, it would create such a wrong impression of me! The guest would be puzzled why I was winking at him while taking him to see Mr Roy” She covered her frustration with a smile.

So this is how embarrassing it could get. As the disease progresses and the frequency of spasms also increase, it no longer holds just a cosmetic/social significance. The patient is unable to speak well because of the twitches, sometimes they are unable to read books or watch TV or work on the computer.

Another patient who was a villager and who loved talking to people and being extremely social became afflicted with Hemifacial spasm. She could not bear to meet people and talk to them, she preferred remaining indoors and not interact with relatives or friends. For her, life became unbearable and lost all meaning. This same patient one month after surgery says that she has stopped having the twitching, and is cured of her hemifacial spasm, and that she has regained her confidence. In another interview that she gave five years after her Hemifacial spasm surgery, she describes her pre-operative ordeal “My face would get pulled to one side, I used to feel heavy in the head and I could not hear well. I consulted a lot of doctors over the years, but no one offered me a permanent cure. I was overcome by frustration…I could not go to social gatherings or functions, I could not meet guests at home….I had to hide the left side of my face with my hand so that nobody could see the twitches. These episodes occurred very frequently, every 1 or 2 minutes. I had winking of the eye, my face and cheek were pulled to the left, and inability to hear well. I was so depressed that I had decided to end my life. As a last resort, I met Dr Jayadev Panchawagh and asked him if he could offer me a permanent cure from Hemifacial spasm. He said ‘Yes, of course!’. I underwent an MRI and was operated in February 2010, ten years after I began suffering from this horrible disease. I have become my happy old self, I can mingle with my friends and relatives, participate in social functions, I can hear well, I can speak well. It is now five years after my operation and I have absolutely no problems.

Initially patients fail to understand what’s happening to them, some think there’s a skin problem, some think that they have a dry eye or have a foreign body in their eye….there is lack of awareness of this disease among the public and even the General Practitioners…that it is called Hemifacial Spasm, that it can lead to serious repercussions and that it has a cure by Microvascular Decompression surgery. So, people suffer and bear this trauma for many years. Patients can lose out on the prime years of their life by suffering unnecessarily. Opting for surgery is a personal choice, once they are offered a solution. I think creating public awareness about this disease and its surgical treatment is of utmost importance.

Initially the spasms are less intense and more focused around the eye muscles and are less frequent. As the compression on the facial nerve progresses, the nerves ‘weaken’ because of constant pulsation. Going back to the analogy of a nerve being like an electrical wire or cable, the nerve fibres are very close to each other like wires in an electric cable. Individual wires are separated from each other by insulation. The equivalent of insulation in the nerve is called myelin sheath. In hemifacial spasm, when there is compression by the blood vessel, the myelin sheath is lost or damaged. This causes the individual wires or nerve fibres to talk to each other, called ‘cross-talk’. This is like a short-circuit in the electric wire caused by lack of insulation. The longer the compression exists, the greater is the loss of myelin and greater is the cross-talk. The symptoms worsen, the disease progresses and the recovery become more unpredictable. Typically it takes about 6 to 7 years for the symptoms to worsen and involve one half of the face.

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