Mr Surve was a farmer who was about 35 years old when he came to us. He had severe left-sided facial pain which had worsened over the years and had come to a point when the pain was present all the time, and he could neither talk nor swallow his own saliva. He had visited many physicians and neurologists, but found no relief. Each physician would either change the drug or increase its dosage, and he would find some relief for a couple of days, but the pain never went away. After a few days of changing or increasing the dosage of the medication, he would be in misery again. He had stopped working for many years, was living off other people’s charity, could not eat and had become emaciated. He could not swallow his own saliva and he had constant drooling, which he could not wipe off with a handkerchief because touching his face or lips increased the pain. He had already had multiple tooth extractions and could only drink liquid food occasionally. He had become very depressed and did not consider life worth living. He had contemplated suicide many times, but had not mustered enough courage to actually do it, considering that he had three children. But he had reached a point when he had decided to end his life. On referral, he visited our center and told us that this was his last attempt at trying to get cured of his pain! He was a diagnosed case of Trigeminal neuralgia, but with no alleviation of his symptoms with oral medication. Despite having had innumerable consultations with doctors, he had not been offered a surgical option for pain relief! Dr. Panchawagh performed a Micro-Vascular Decompression of the Trigeminal Nerve. He had immediate pain relief post-operatively. When he woke up after anaesthesia, the very first thing he did was to touch his face. When it registered that he had no pain, he could not believe it. He repeatedly touched his face and lips in the Intensive Care Unit, and his incredulousness at total pain relief after ten long years of suffering was overwhelming, to say the least. When he first sipped water later, and then drank a whole litre, he repeatedly told everyone who was willing to hear that water never tasted sweeter! He could not stop talking, and smiling…he entertained all the ICU staff with his life story. 2.
Mrs Najma Pathan, a 28 year old housewife started experiencing symptoms 3 years before she visited our center. Initially, the part of her head behind her left ear was painful intermittently. She dismissed this as headache and tried self-medication with the usual painkillers. Gradually, the pain became associated with a burning sensation over her ear and behind it, like chilli had been rubbed into it. Visits to doctors resulted in more painkillers of different kinds, but with no relief. Slowly, the pain spread to her cheek and lower jaw; travelling on a two-wheeler became impossible because the air movement triggered an episode of pain. Her dental hygiene suffered because she was unable to brush her teeth. She was unable to sleep well at night and needed sedatives. Certain other medication made her drowsy in the daytime and unable to concentrate. She preferred not to attend social gatherings or entertain guests at home. Her Blood Pressure had shot up and she needed to go on anti-hypertensives to control it. Overall, she had become despondent and withdrawn. Micro-Vascular Decompression or MVD cured her of her pain and high blood pressure and she has returned to her usual cheerful, extrovert self.3.
Mrs Surve had been diagnosed to have trigeminal neuralgia about 3 years ago. She had been having similar symptoms for another 3 years before, but was not diagnosed. She was on four different medication three times a day, and yet she had very little pain relief. After she underwent Micro-Vascular Decompression at our centre, she continued to have persistent pain for 2 days post-operatively. She was put back on her medication at reduced doses. On the second day, she felt slightly better and her doses were reduced further. By the fifth post-operative day, she had no pain and all her pain killer medication was stopped completely. Dr Panchwagh says that this situation, though not common, does occur occasionally. It is more often seen in patients who have been on very high doses of medication for very long, and their system needs to be weaned off the drugs slowly. Sometimes, the operative site pain radiates towards the neck or ear and patients could mistake it for their TN. Reassurance gives them relief! THE CURSE THAT CAN BE CURED IF OPERATED IN TIME, by Dr Jayadev Panchawagh (Neurosurgeon)
‘Trigeminal neuralgia is one of the cruelest diseases that can afflict a human being. It reduces one to such an inhuman condition that only the sufferer can tell you about it. It surpasses all the severe punishments even the Satan can imagine & execute in hell’.
Dear friends, if you think that I have started with ornamental language, you are mistaken. These very sentences have been vocalized in my OPD by sufferers of trigeminal neuralgia. If at all, I am making them less dramatic.
Various adjectives and descriptive phrases used by these sufferers can give us some idea about this malady. ‘Sudden’, ‘lancenating’, ‘burning’, ‘electric shock’, ‘current’ like, thousand needle pricking, ‘akin to red chilly powder being thrown on the face and eye’, ‘lightening hitting one side of face’ are a few of them.
Typically, there is a trigger point on one side of the face which, when touched, starts this attack. A breeze flowing on the face, washing the face, gums getting touched by a toothbrush or food or water, facial movements while speaking etc. are few of the triggers which start the attack.
The pain in confined to one side of the face in upper, mid or lower portion or in combination of all three areas.
An attack typically lasts for a few minutes but the patient wishes he or she were unconscious than to suffer this attack.
This attack can come again any time; and hence the patient is in a constant dread of this impending doom.
From the past, there are documented cases of suicides committed by the sufferers. Due to the ignorance about the disease, some of them were thought to be mentally ill and were kept in mental asylums.
A description by one Dr John Locke written in 1677 December is available and one can clearly see that he was referring to trigeminal neuralgia.
He was called in one night to examine the countess of Northumberland, wife of the British ambassador to France. He writes,
“On Thursday night last, I was called to see her and I found her in a fit of such violent and exquisite torment. That….it forced her to such shrieks and cries as you would expect from one upon the rack. When the fit came, there was, to use my lady’s own expression, pain like a flash of fire all of a sudden. It shot into the right half of her face……..
…….these violent fits of pain terminated on their own and then my lady was perfectly well, excepting only a dull pain which ordinarily remained in her teeth……….speaking was apt to put her into this painful torment ; sometimes opening her mouth to take any thing or touching her gums……”
Initially, the cause of the pain is not easily apparent to the patient. It could be mistaken for pain coming from the gums and teeth and some of them get their teeth removed. However to no avail.
Month or years of agony reduce such a patient to one who is afraid to eat, speak, go out in wind, and brush his or her teeth and carrying pain relieving medications with them.
Some medicines like carbamazepine (tegretol, mazetol), clonazepam, gabapentin, pregabalin, amitriptiline etc. are initially useful to some extent in some people. But their effect is temporary. They need to be taken continuously to prevent an attack and, being medicines acting on the nervous system, can have severe side effects. In spite of this, it is true that drugs are the first line of treatment for a few months.
But as the days and months pass, this ‘drug numbed’ patient carries on with progressively increasing doses of medicines and altered personality due to this chronic pain syndrome. The close relatives are initially worried & later irritated. Sometimes the spouses of the patient are depressed because of this disease.
Is there no alternative for these unfortunate patients........ ?
There certainly is!
Do they know about it?............. Very few do.
And that alternative is MVD.
Radiofrequency lesioning, glycerol rhizotomy, radiofrequency ablation etc. are a few alternatives which are known to some people. But all of them are destructive procedures.
So, what is a non-destructive and most physiological alternative? It is called MVD, or Microvascular decompression. Towards the end of the last century, it was suspected and then confirmed that the commonest cause of this disease is a blood vessel (Commonly an artery but veins, arterioles also) pressing on this nerve in the region where the trigeminal nerve enters into the brain. This is called the Root Entry Zone (REZ).
These blood vessels indent into this zone and this is the reason behind attacks of the neuralgia. The answer is, like all profound truths, simple. We separate this vessel from the nerve and keep it separated by a small sponge. This procedure is performed under the neurosurgical microscope and it is effective in 98% of the patients according to my experience of more than 800 such surgeries and which corresponds to the international experience.THE BLOOD VESSEL IS SEEN TO HAVE MADE A DEEP IMPRESSION IN THE TRIGEMINAL NERVE IN THIS OPERATIVE PHOTO FROM ONE OF MY RECENTLY OPERATED PATIENT
I have been involved in these surgeries for the past 12 years and can say with confidence that this surgery should be offered to these unfortunate patients early in the course of the disease. This will certainly prevent the inevitable cascade of suffering & more suffering which I have already described.
According to Dr. Peter Jennetta, who did a great work in MVD surgery field in the last century, the efficacy of surgery is higher when done EARLY in the course of the disease and BEFORE any of the destructive procedures like radiofrequency lesioning is attempted. The success rate also is better in the experienced hands. This means that the team which is experienced in this surgery and does this surgery frequently is likely to give better results.
A misconception in some doctor’s and public mind is that this surgery is not for the elderly. On the contrary, to quote Jennetta, “this surgery is eminently suitable for the elderly sufferers as the cerebellum is atrophic and the corridor to the nerve wide open for the surgeon.” Our personal experience confirms it emphatically and over half of out patients were elderly.
For the last few years, it has been my endeavor to inform, educate & relieve these patients of pain to the best of my ability.
As a neurosurgeon, there is no better joy for me than to see a cured trigeminal neuralgia patient smiling after MVD surgery. The commonest reaction coming from a cured patient is “Doctor, why were we not informed about this (MVD procedure) before?
We would not have lost these last few years of our life due this horrible pain, had we come to you earlier”.
I wish that the option of this surgery reaches as many patients as possible and that their life becomes really comfortable.