In this section we shall be presenting a series of ‘Trigeminal neuralgia patient story’. The first is Maria from Mauritius.
This is the story of a woman, Maria, who lived in Mauritius. She was 45 years old when she came to us. She had been suffering from pain near her eye from 7 years. Initially she used to massage the area, and then noticed that massaging increased her pain. It used to come in short bursts, for a few seconds, like an electric-shock. She observed her pain for a few months, while her family members dismissed it as something that was not very serious. Over a period of the next few months, the pain spread to the lower part of her eye, near her nose and cheek, and came in more frequent bursts. Unable to tolerate this any longer, she visited her family physician, where she was prescribed many painkillers. They did not help and made her nauseous.
This is an article on Chronic facial pain (Trigeminal Neuralgia) from Times of India, Pune, published on May 7 2018.
For five years, 60-year-old Sawmy, a Mauritius national, suffered from severe pain in his face. Sawmy is an agriculturist by profession. He is married and has triplets.
The condition, Trigeminal neuralgia (TN) was such that he would go without eating for days together. Medicines would prove useful only for short periods of time. As is common in cases of TN, he was caught between the side effects of the high-dosage medicines and attacks of severe pain.
Any severe pain that remains untreated or partially treated for a prolonged period of time gets complicated, and its intensity worsens. This is termed chronic pain syndrome. In Sawmy’s case, the syndrome had turned his life upside down.
“In his desperate search to find a cure, Sawmy had gone to France — his sister lives there — where he consulted a number of doctors, to no avail. “I was on high doses of medicines. They were mainly three types of pain modulators. I developed drowsiness, forgetfulness and loss of balance due to the prolonged use of the drugs,” he said. All the doctors in France did was prescribe more medicines, which only worsened the side effects for Sawmy. “The repeated attacks of pain caused personality changes — they made me more irritable,” he said.
He eventually found relief in Pune, while browsing on Youtube and the internet. Though he didn’t have any acquaintances in India, Sawmy visited Pune after contacting Dr Jaydev Panchwagh over Whatsapp. “I contacted him for trigeminal neuralgia surgery. This alone speaks about the severity of pain I had, and how desperate I was to get rid of it,” he recalled. He now says that Dr Jaydev Panchwagh is one of the best neurosurgeons for trigeminal neuralgia surgery.
Explaining this unusual case, Dr. Jaydev Panchawagh said, “The drugs prescribed to patients suffering from Trigeminal neuralgia are mainly pain modulators. They are of different varieties or groups. The problem with the drugs is that they don’t target the Trigeminal nerve where the pain originates. So they (the drugs) act on the entire nervous system and cause neurological side effects.”
He added: “In simple words, these medicines numb the nerves. The drugs do not target the basic cause of neuralgia, which is vascular compression on the nerve as seen in majority of the cases, Dr. Panchawagh said.
“A very important aspect is the fact that chronic pain (if persistent for a year or more) can lead to permanent changes in the brain, including shrinkage, especially in the setting of neuropathy. Widespread impact on memory and cognition, sleep, sexual function, and development of hypertension are other important consequences. The psychology of chronic pain can best be understood as ‘learnt helplessness’, that is, the psychology of a person who is trapped in a situation from which there is no escape.”
Microvascular decompression surgery, or MVD surgery, is the most beneficial surgical treatment for permanently treating trigeminal neuralgia, claim doctors. “It is the only procedure which treats the basic cause of the trigeminal neuralgia,” said Dr Jayadev Panchawagh, who carried out the surgery on Sawmy. He has operated on more than 950 other patients since 2005.
Sawmy underwent the surgery under care of Dr Jaydev Panchwagh in Pune. “It has been 22 days now with no attacks of pain. I don’t have to take any medicines post-surgery. It is a huge relief. Surgery has proved to be a boon. I wish I knew about it earlier,” he said, when interviewed after his MVD operation for Trigeminal Neuralgia.
ABOUT THE CONDITION
There are two nerves-one on each side of the face-that carry the sensation from the face and gums to the brain. They are called trigeminal nerves. Sensations from the right side of the face are carried by the right trigeminal nerve. Neuralgia means nerve pain. Compression by a pulsatile blood vessel causes trigeminal neuralgia in a majority of the cases.
How patients describe the pain due to TN
* The worst pain experienced by mankind
* The pain you would not wish even on your enemies
* Death is better than this suffering
* Pain of 1,000 knives piercing the face
* A hot ‘chilli bomb’ exploding on one side of your face
This is a potentially misunderstood medical condition. The behavioural and emotional changes in the patient is difficult to understand for others. It is also a condition that can be diagnosed if one is aware of its existence.
* Trigeminal neuralgia is also known as the ‘suicide disease’ because of the intense pain triggered by talking, eating or even a breeze.
* A study has revealed the 92% of patients were unaware of the diagnosis prior to their doctor telling them..
* Most of them were treated for dental or jaw pain, migraine or even psychiatric illness
* The reason for misdiagnosis is low awareness of the condition.
My name is Harikrishna Sawmy Pillai and I live in Mauritius. I am in the agriculture business and need to drive heavy vehicles like tractors around. And it involves a lot of hard work.
How the TN pain began
I first noticed this pain five years before my surgery. The first time I went to see my neurologist in Mauritius, I told him my problem and he gave me some tablets.
My name is Mrs Parbatee Shyama Raghupooth, and I am from Mauritius. I suffered from Trigeminal Neuralgia since June 2018. Then I was started on Tegretol, to which I reacted badly. Afterwards, I was started on Gabapentin, Lyrica, Baclofen and all these were taking away all the joys of my life. In my acute phase, I used to have shots of Pethidine and Morphine; and lately my neurologist advised me to have cyber knife therapy.
Undergoing Microvascular Decompression surgery for Trigeminal Neuralgia: My story
I am Dr Dinesh Kumar Mishra from Gwalior. And I am an associate professor in mathematics. I have been suffering from Trigeminal Neuralgia for the last 3 years.
The pain was in my right side forehead region. specifically, it was in the right side of the eyebrow. It was an electric shock like pain.
My name is Seetohul Deemawatee. I am from Mauritius.
I had Trigeminal Neuralgia, and I suffered from this for nearly 6 years. The pain would aggravate when I swallowed, or talked or drank water or brushed teeth or even when the breeze of the fan used to touch my cheek. The pain was electric shock-like kind of pain. I was recieving medical treatment for my trigeminal neuralgia for many years, but I still had pain.
This is a very popular question in my outpatient clinic”.
Dr Jaydev Panchawagh is a top neurosurgeon (brain and spine surgeon) in Pune, Maharashtra state in India. Here he discusses how Trigeminal Neuralgia or facial pain disease is caused, and its symptoms and its treatment by MVD surgery.
How is Trigeminal neuralgia diagnosed?
Diagnosis of Trigeminal Neuralgia may not be easy if one has never heard of it. The TN pain is usually like an electric current. It is brought on by brushing teeth or washing face or touching the face, breeze, chewing etc.
Usually in the early stages Trigeminal Neuralgia, pain responds to medication. Sometimes the pain is so severe and debilitating that it is called Suicide disease.
Why is Trigeminal neuralgia caused?
Trigeminal Neuralgia may be caused by compression of the nerve by one or more blood vessels. Dr Jaydev Panchawagh explains here that as the vessel keeps on pumping its pulsations against the nerve for months and years, severity of the disease goes on increasing.
Are medications helpful for Trigeminal neuralgia treatment?
Drugs are only temporary relief givers. Simply speaking, the drugs are just the numbing chemicals. They do not treat the basic cause. These drugs give rise to side effects because they do not “know” that only the nerve is to be numbed. So, they numb the entire nervous system.
In the meanwhile, pulsations continue to hammer the nerve, severity increases and drug doses increase. The person enters into a negative cycle and becomes victim of the drugs on the one hand, and pain on the other.
What causes Trigeminal neuralgia?
What gives best relief for trigeminal neuralgia pain?
This Trigeminal Neuralgia surgery video explains very clearly how there is compression of the Trigeminal nerve by a blood vessel and how it can be treated by MicroVascular Decompression (MVD). The film shows how pulsations cause “short circuiting” inside the nerve and pain is ignited.
What is the surgery for treatment of Trigeminal neuralgia?
Dr Jaydev Panchwagh demonstrates MicroVascularDecompression or MVD surgery. Since the main culprit behind TN is one or more blood vessels compressing the trigeminal nerve, a decompression usually helps in relieving pain. He inserts a teflon sponge to separate the nerve and blood vessel, which gives relief from Trigeminal Neuralgia.
