Brain Surgery

Trigeminal Neuralgia

Information

Trigeminal neuralgia is a very painful condition causing severe misery and desperation in the lives of the sufferers. Micro vascular decompression surgery has the potential to cure this condition, if done in time and by an experienced neurosurgical team.
Dr Jaydev Panchawagh, a renowned neurosurgeon from Pune (India) has been performing these surgeries since the last 10 years and has started a centre of excellence for Micro-Vascular Decompression surgeries in Pune. This article explains in detail about this pain and the usefulness of Micro-Vascular Decompression surgery.
Click here to watch video related to Trigeminal Neuralgia
Click here to watch video of Patient Sanjay Kate.
Click here to watch video of Patient2.

Faqs

Ans.
There are two nerves - one on each side of the face – that carry the sensations of face and gums to brain where we can appreciate them. These are called trigeminal nerves. Sensations from the right side of the face are carried by the right trigeminal nerve. 'Neuralgia' means nerve pain. So, Trigeminal Neuralgia is the combination of the two...meaning the pain in the region of trigeminal nerve, or in short, pain on one side of face and gums. Trigeminal neuralgia is usually unilateral (or one-sided).

Ans.
Trigeminal neuralgia is basically a clinical diagnosis. What it means is that doctors make the diagnosis by carefully listening to the patient’s history and description of the pain. The typical trigeminal neuralgia has following characteristics:

  • it comes suddenly and lasts from seconds to many minutes
  • it is in the distribution of the trigeminal nerve, on one side of the face
  • it can start from upper or lower gum, teeth, nose, chin, cheek, just in front of the ear, forehead, eye, temple and spread to other parts of the face

The pain experienced in trigeminal neuralgia is very severe and is often described as:

  • Sudden electric-current or shock-like pain
  • Sudden piercing, sharp knife-like pain in the face
  • Pricking of multiple sharp needles
  • Sudden blast of hot bomb in the face
  • Like somebody putting red-chilli powder on the face.
  • Like a lightning striking the face.

Initially, the attack terminates in a few seconds or a few minutes, and then the person is usually pain-free till the next attack. In the advanced stage, the pain remains for a longer time, or become continuous for extended periods of time; and there is continuous low intensity pain between the attacks.
There are a few commonly seen trigger points, which when stimulated start the attack.
  • Upper lip
  • Ala of the nose
  • Forehead just above the eye
  • Just in front of the ear
  • Upper or lower gum
  • Just below the lower eyelid.
Touching one or more of these points, blast of cold, air hitting them, even a gentle breeze against them, brushing teeth (the toothbrush touching the gums), washing face, shaving, jaw movements while talking or chewing etc., can bring on the trigeminal neuralgia attack.

Ans.
This pain surpasses any other pain experienced by humans in severity. In short, it is extremely severe. Various patients have described this pain as:

“the worst pain ever experienced”
“the pain you should not wish even your enemies to have”
“death is better than this suffering”
“deadly curse”
“ pain of thousand knives piercing the face”
“ a hot chilli bomb exploding on one side of the face”

Ans.
Often, in the initial phases, the relatives of the patient are bewildered as they see the patient hale and hearty one moment and, as the attack comes, the excruciating pain makes the patient miserable.

  • the patient becomes suddenly immobile
  • face contorted in severe agony
  • tilts the head towards shoulder
  • covers the painful side of the face with hand or cloth to avoid any blast of air
  • does not talk, lest the attack should increase
  • sometimes there is a loud groan and shriek-which indicates the unbearable nature of this pain

The patient slowly relaxes after the attack is over.

Ans.
Along with the above-described acute effects, the life pattern slowly changes.
The relatives observe that:

  • the patient avoids sitting in cold surroundings like air-conditioned rooms
  • avoids going in windy atmospheres, avoids sitting in fast moving car especially near the window
  • is reluctant to go to events needing socialisation which involves talking and eating, for the fear of having an attack
  • is reluctant to brush teeth, wash face, shave or rub cosmetics on the affected face
  • seems to have reduced appetite-even skips meals
  • constantly feels tired and psychologically worn out
  • severe depression may follow
  • high doses of nerve and brain numbing medications makes him/her sleepy, loses balance while walking
  • may develop suicidal tendencies

Ans.
In the initial phase the attacks are short and there is a long gap between them. Progressively the attacks tend to become longer, more severe and more frequent. There may be sudden disappearance of the attacks for a few days or months but gradually these attack 'holidays' also become rare and then disappear. In patients who are not treated in time, the attacks become almost continuous and the sufferer is reduced to a miserable creature begging for relief.

Ans.
“Pressure (Pulsatile usually) on the nerve leaves a short-circuiting effect”.
-San Diego neurologist Dr. James Nelson

The trigeminal nerve is like a phone cable. As you know, a phone cable has insulation from the outside. But inside there are smaller cables tightly packed. Each individual small cable has, in turn, its own insulation and that's why they cannot normally 'Cross talk' with each other. Otherwise an impulse from one cable can short circuit to the other cables.
Similarly, inside the trigeminal nerve, there are smaller nerve fibres. Each one has its own insulation preventing a 'cross talk' between them. The insulation is made up by a substance called the 'myelin'.
The character of this myelin changes at and around the region where the nerve enters in to the brain.
This is called the Root Entry Zone (REZ). Towards the end of the last century, it was discovered that one or more blood vessels compressing this zone (i.e. the REZ) can cause trigeminal neuralgia.
It was postulated and then proven that one or more blood vessels cause severe indentation in the REZ portion of the nerve. Months and years of continuous pulsations against this portion of the nerve damages it. This compression seems to cause damage to the myelin, which normally provides insulation to the individual nerve fibres. As a result, the nerve impulses cross-fire. A simple 'touch' to a portion of cheek or lip or gum gets cross fired and is perceived as sudden, severe sharp pain. This is the classical trigeminal neuralgia 'attack”. As is well known, blood vessels in human body 'elongate' and harden with age. It is known as the process of 'ectasia'. In the individuals prone to trigeminal neuralgia, the vessels originally are in close contact with the nerve. As age advances, they elongate and literally start indenting into and indeed "burying" themselves into the REZ portion of the nerve… causing damage to the myelin and starting the disease process of TN.
In some patients, during the initial days and months of the disease, the body tries to repair this damage by reforming the myelin, thus causing spontaneous disappearance of the attacks-knows as 'pain holidays'.... only to reappear again with continued pulsatile compression or 'hammering' of the nerve by these blood vessels.
Generally, as the days, months and years pass, the attacks become more severe, more frequent and subsequently the pain becomes almost continuous. With the exclusion of a small proportion of trigeminal neuralgia (patients with multiple sclerosis or tumours or infarcts), the majority of the patients get trigeminal neuralgia due to the blood vessel compression.
As Dr. Peter Jennetta says, "in such patients, a careful and experienced surgeon always finds an offending vessel that is causing damage to the nerve.”

Ans.
As we have seen, majority of the trigeminal neuralgia patients get pain due to severe compression by a blood vessel.
In a small proportion, tumours or cysts at the root entry zone of the nerve, causing compression and displacement of the REZ can cause trigeminal neuralgia.
However, I personally would seriously doubt that a static compression by tumour would cause trigeminal neuralgia and, after resecting the tumour, would look for an artery lodged deeply into the REZ due to the tumour pushing it into the nerve. It is also possible that the blood vessel is on the opposite side of the tumour and the tumour has pushed the nerve into the blood vessel. In one series, all the tumour related neuralgias were caused by the tumour displacing a blood vessel against the nerve. This is very major corroborative evidence that a pulsatile blood vessel compression causes trigeminal neuralgia in majority of the cases.
Multiple sclerosis, a demyelinating disease affecting the REZ or trigeminal nucleus can also cause trigeminal neuralgia in small proportion of cases. Other still less common causes could be post meningitic, brain infarcts etc.

Ans.
The diagnosis of trigeminal neuralgia is made on the basis of a good medical history. Usually, the description of pain and the patient's severe agony while talking, typical facial contouring and defensive facial posturing to avoid an attack, immediately give away the diagnosis. However, I always feel that along with the diagnosis of the disease, one has to acquire a fair idea about the severity of the disease.
It is very easy to assume that the patient's pain is well controlled, if, at the moment of consultation, due to the effect of an anticonvulsant medication the patient appears free of pain. Many patients take their medication sometime before they come to see the doctor, as they rightly expect that they will have to talk a lot during the consultation. I have found time and again, that the apparently normal looking patient giving history of severe, unbearable pain attacks on the very morning.
On probing carefully the spouse, daughter or brother/sister of the patient, describe that pain attacks while the patient starts eating, I have found that the patients learn to tolerate certain amount of pain as they fear that increasing the dose of sedative anti-convulsants will make them non-functional (based on the previous experience).
What they don't know is that there is a surgical option, having the potential to cure the disease and stop the drugs. That is the reason, why detailed history is a must.
A good quality MRI with trigeminal nerve sequences is the next step, primarily to rule out tumours. A demonstrable vessel-compressing the nerve is helpful but NOT A PREREQUISITE for surgical decision.
This is because severe vascular compression does exist, demonstrable at surgery even when MRI does not show it.

Ans.

Up until the 1980's, most papers and textbooks listed the cause of trigeminal neuralgia as 'unknown' or 'unclear'. Even today, there are different doctors advising different modalities. After trying a few of them, we strongly felt that micro vascular decompression is the right procedure (if done in time and by a surgeon and team performing these procedures routinely and successfully for a significant number of years) which has the best chance of caring for this disorder.

We have seen the happiest patients with complete disappearance of the pain after Micro-Vascular Decompression surgeries done at our trigeminal neuralgia centre in Pune, India. This personal observation and opinion is formed after 10 years of concentrated battle waged by our team against this severe pain. We have also used other modalities like radio-frequency ablation in the past and still do use it in resistant cases, as a rescue procedure. But having said this, we strongly feel that the best and the long term results are achievable by micro vascular decompression done rightly, and in time.

  

Ans.

After performing over 800 MVDs in the last 10 years with the help of more or less the same group of theatre assistants and anaesthesiologists at our trigeminal neuralgia centre in Pune, India, I (Dr. Jaydev Panchawagh) am personally convinced that the surgical results are significantly better if the same surgeon and the same theatre-team participate in these surgeries. We ourselves have seen remarkable betterment in the surgical outcome and quality of pain relief progressively in our own series over the last 10 years.
I also think that the nature of this surgery is very different from other neurosurgeries. Here, we are working around autonomically active nerve, which is already traumatised due to the months or years of continuous pulsatile compression by vascular structures. Also, we are working through a narrow corridor and we have to be continuously aware of the degree of tolerance or rather intolerance of the structures to maneuvering.
There are issues of preservation of draining veins, extent of mobilization of the vessels, assessing the curvature memory of the offending artery, etc. There is no single definable pathology in these cases. Every case is unique and has to be assessed on the spot during surgery. It is for these reasons that we believe that trigeminal neuralgia cases should be operated by a surgical team highly experienced in this surgery. 
It was with this conviction, that we started this trigeminal neuralgia centre for Micro-Vascular Decompression surgery at Pune, India.
Incidentally, a similar technique can also be used for decompressing the facial and the glossopharyngeal nerve for treating hemi-facial spasms and glossopharyngeal neuralgia respectively. The excellence gained by the surgical team thus automatically becomes available for these disorders. Excellence in any surgery does not mean that the risks become zero, but it does mean that the risks are significantly reduced and the results are better.
Formation of a centre of excellence for MVD also allows for development of excellence in the paramedical activities like patient counselling for trigeminal neuralgia, focused training of the surgical assistant, peer communication amongst the trigeminal neuralgia patients and betterment in the post-operative treatment.
The trigeminal neuralgia centre also holds periodic meetings of those who are cured and they share their experiences and post-operative course amongst themselves and other trigeminal neuralgia patients.
This also serves as excellent feed-back for the treating team and at times, improving their approach.
It is for these reasons that we have pursued this project of developing a centre of excellence in treating the trigeminal neuralgia pain, and also for conditions like hemi facial spasms and glossopharyngeal neuralgia.
This centre offers an option to the people suffering from this severe pain, and related chronic psychological trauma associated with it, a chance to get rid of this deadly pain.
Like other modalities used in treating trigeminal neuralgia, surgery also has a potential of risks involved, albeit less. The fact is that with more experience in this field and with remarkable improvements in modern surgical and anaesthetic techniques, the risks have gone down.
When the agony and misery of the disease becomes unbearable and simpler alternatives fail, the sufferer gladly accepts the potential risks and it is at this stage that MVD has a very handsome potential of giving new pain-free life to the patients.

case-studies

1   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.

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