Trigeminal Neuralgia- the “Suicide Disease”

This is the story of Sahanawat Khan, a 28 year old homemaker from Calcutta, Md Salauddin, a 37 year gentleman from Calcutta, Azharun Nisha, a 68 year old lady from Orissa, Manju Pathria, a 66 year old lady from Calcutta, Nitai Saha, a 46-year-old hawker in a local Calcutta train, Jitender Soni, a 31-year-old dynamic businessman from Calcutta and Krishan Kumar, another 34-year-old dynamic businessman from Calcutta.
All of them started having searing attacks of lancinating electrical shock-like pain down one side of the face occurring multiple times a day. They were diagnosed as cases of Trigeminal Neuralgia and initially responded to medicines for few months/years (which is quite typical of trigeminal neuralgia) but stopped responding thereafter. The electrical-sparking pain down one side of the face became unbearable and almost constantly present.  All of them had even stopped eating solid food which aggravated their pain. And with that began a long and excruciatingly painful journey in search of a relief. They were all put on multiple expensive medications in high doses with negligible pain relief.
Finally, all of them found their way to Dr Sujoy Sanyal, Functional Neurosurgeon at the Rabindranath Tagore Hospital in Calcutta. They were recommended a special MRI of the brain to look for any blood vessel compressing the fifth or trigeminal nerve. The fifth or trigeminal nerve carries all the sensations from one side of the face to the brain and it has been seen that a blood-vessel compressing the fifth nerve can be the cause of Trigeminal Neuralgia. Md Salauddin’s, Azharun Nisha’s, Manju Pathria’s and Nitai’s MRI turned out to be negative for any compression on the fifth/trigeminal nerve.
In view of this negative MRI, Md Salauddin, Azharun Nisha, Manju Pathria and Nitai were recommended by Dr Sanyal to undergo a special procedure called Percutaneous Trigeminal Nerve Balloon Micro-compression. What this procedure involves is directing a fat needle very cautiously under X-ray guidance along the side of the painful face to a cave at the base of the skull where the fifth/trigeminal nerve emerges from the brain to supply the face. Once the cave is reached, a balloon is inflated to compress the painful trigeminal nerve. This is a percutaneous procedure done under general anaesthesia, which means that no cut/incision is made and everything is done through a needle. Nitai, Azharun Nisha, Manju Pathria, Md Salauddin  underwent this procedure in March 2008, January 2012, January 2013, March 2014 and all of them are pain-free till date.
Sahanawat’s, Jitendra’s and Krishan’s MRI showed up a blood vessel compressing the fifth/trigeminal nerve thus accounting for the Trigeminal Neuralgia.
All three of them were given two options of treatment, one being the same procedure that Md Salauddin, Azharun Nisha, Manju Pathria and Nitai had undergone and the other being an operation called Microvascular Decompression. What Microvascular Decompression involves is cutting out some bone behind the ear and then going inside the brain to reach the fifth/trigeminal nerve, which is located at quite a depth. The microscope as well as the endoscope is used to reach and identify the blood vessels compressing the painful fifth/trigeminal nerve. The compressing blood vessels are separated from the nerve and the separation is maintained by interposing pieces of synthetic material between the vessel and the nerve.
Sahanawat, Jitender and Krishna were explained the pros and cons of both procedures by Dr Sanyal and after having done some internet research on their own, decided to go in for Microvascular Decompression. What prompted them to go in for Microvascular Decompression was the fact that despite being a surgery of the brain and thereby being riskier than Percutaneous Trigeminal Nerve Balloon Micro-compression, Microvascular Decompression is a more time-tested procedure and gives very good rates (80-90%) of long-term complete pain relief.
Jitender underwent Microvascular Decompression in end of July 2008.Intraoperatively, two blood vessels were seen compressing the painful fifth/trigeminal nerve in a sandwich fashion. Both of them were separated from the nerve thus completely decompressing the nerve. Jitender obtained immediate post-operative complete pain relief and is pain–free till date. Krishan also opted for Microvascular Decompression and underwent surgery in July 2009. Intraoperatively, three blood vessels were seen compressing the painful fifth/trigeminal nerve in a sandwich fashion. All of them were separated from the nerve thus completely decompressing the nerve. Krishan obtained immediate post-operative complete pain relief and is pain–free till date. The same is true for Sahanawat who underwent this surgery in January 2014.
Trigeminal Neuralgia is a condition characterized by searing attacks of electric-shock like pain down one side of the face. It is often confused as dental pain and patients often go on visiting dentists. It usually initially responds to medicines like carbamazepine but often stops responding to medications after a period of time. Though it is a benign disorder, the pain is so severe that if uncontrolled, it can lead one to contemplating suicide. That is why it is called the “Suicide Disease”. The incidence of Trigeminal Neuralgia is approximately 70 cases per 100,000 population.
Once Trigeminal Neuralgia becomes uncontrolled, it can be treated either by an operative procedure in the form of Microvascular Decompression, which is what Jitender/Krishan/Sahanawat had undergone or it can be treated by percutaneous trigeminal/fifth nerve interventions. The percutaneous interventions include older and more commonly used methods of partially destroying the nerve by either glycerol injection or by radiofrequency current. As is obvious, such partial destruction of the nerve is not really desirable and these older and more commonly used methods lead to shorter periods of pain relief while they can even create a deadly complication in the form of very severe burning facial pain due to nerve destruction called Anaesthesia Dolorosa, which is believed to be the worst pain known to mankind. It is also to be noted here that long-term results of glycerol/radiofrequency are much worse, with most patients requiring repeated injections at regular intervals with decreasing efficacy.
The newer percutaneous method is Percutaneous Trigeminal Nerve Balloon Micro-compression, which is what Md Salauddin, Azharun Nisha, Manju Pathria and Nitai had undergone. This technique is more complicated and thereby there are only 2/3 practitioners proficient at this technique in the entire country, including Dr Sujoy Sanyal. This procedure does not destroy the nerve. Instead, a balloon is inflated to compress the nerve. This procedure leads to long periods of pain relief. Because it does not destroy the nerve, it does not lead to the deadly Anaesthesia Dolorosa. The biggest experience with Balloon Microcompression comes from Australia where 81% of patients were found to have complete pain relief at 5 years. This almost rivals the results achieved with Microvascular Decompression. At 10 years, however, 68% of patients were found to have complete pain relief, which is definitely lower than the results achieved with Microvascular Decompression.
Microvascular Decompression is a more time-tested procedure and gives an 80-90% chance of long-term complete pain relief. However, it is a technically demanding surgery of the brain and carries a slightly higher chance of complications like hearing loss, facial paresis, bleeding and infection in the brain than percutaneous procedures. It is considered to be the procedure of choice for younger patients because of the high rates of long-term complete pain relief. Newer and more improved MRI techniques have increased the chances of identifying a blood vessel compressing the nerve pre-operatively.
Dr Sanyal has been an Invited Faculty on the topic of Trigeminal Neuralgia at multiple international conferences, including the World Congress of Neurosurgeons in South Korea 2013 and the Asian Congress of Neurosurgeons in 2012. He speaks on “Trigeminal Neuralgia- a long-term non-destructive approach”.
Dr Sanyal is a well known figure in the Neuro-fraternity of Eastern India, having pioneered Deep Brain Stimulation/Brain Pacemakers for Advanced Parkinsons Disease/Dystonia/Essential Tremors, Epilepsy Surgery, Endoscopic/Minimal Access Brain and Spine Surgery, Pacemakers for Urinary and Faecal Incontinence/Non-obstructive Urinary retention, Intrathecal Baclofen Pumps for Spasticity and Endovascular Neurosurgery including Aneurysm Coiling, AVM Embolisation and Carotid Stenting.
He joined Rabindranath Tagore Hospital, Kolkata in 2007 after having spent many years at the All India Institute of Medical Sciences and the USA/Canada.  He has been honored with multiple awards from the World Congress of Neurosurgeons, Asian Epilepsy Surgery Society, Asian Congress of Neurosurgeons, European Society of Stereotactic and Functional Neurosurgery, American Association of Neurosurgeons, Congress of Neurological Surgeons, International League Against Epilepsy, International Association for the Study of Pain, the Rotary Foundation International and the International Society of Minimally Invasive Neurosurgery. 

Leave a Reply

Your email address will not be published. Required fields are marked *