Trigeminal neuralgia — sudden and extreme facial pain — can be crippling. Jeff Axe, 59, a retired chemical company worker, had surgery to cure it, as he tells Eimear O’Hagan.
Grateful: Jeff Axe was delighted by the results
One morning in early 2013, I happened to touch my chin and suddenly felt a sharp, stabbing sensation to the right side of my head. It was as if I’d had an electric shock.
The same thing happened a few days later, while I was shaving — the pain striking when the razor came into contact with my upper lip area. It went in an instant and was like someone was poking my head with a hot needle.
Within a few weeks, the pain began to occur when I spoke louder than normal, but subsided when I stopped talking.
As it came and went so quickly, I didn’t take anything for the pain, but I was concerned enough to see my GP.
He told me I was displaying classic symptoms of trigeminal neuralgia — caused by the compression of the trigeminal nerve that carries messages to do with sensation and movement around the face.
He said the compression was likely caused by an artery pressing on the nerve. He prescribed carbamazepine, which calms nerve activity. I took it daily — as many as four tablets a day during bad episodes.
When I had an attack, which was three or four times a year, the pills would dull the pain and it would quickly subside, though the medication did sometimes make me feel drowsy.
But, in October 2017, my pain became far more severe and the drugs were no longer working. Anything that involved using my jaw — talking, laughing —was a real problem.
Brushing my teeth in particular became nightmarish. The right side of my face would throb — I could only stand it for 20 seconds and would scream in agony, gripping the sink for support. It felt like someone was twisting a knife into my head.
Mr Axe, a retired chemical company worker, had surgery to cure it. He said eating and drinking became agonising
Eating and drinking became agonising, too. It would take me an hour to eat a bowl of cereal, and I lost weight. Windy weather was a trigger. And, just a few words into a conversation, I’d have to stop because the pain was overwhelming.
Within a few weeks, I was in agony day and night. Along with the stabbing pain to the side of my head, I also had a severe headache concentrated on the right side of my face.
I was exhausted and I would sit alone downstairs, rather than toss and turn in bed next to my wife, Lavinia.
My GP increased the dosage of carbamazepine and prescribed two other drugs. I was taking 16 tablets a day, but nothing was working.
Using my private health insurance, I saw a neurologist, who recommended surgery with Kenan Deniz.
An MRI revealed that my trigeminal nerve had indeed been impinged by an artery. When I saw the images, I couldn’t believe how entwined they were — like two snakes wrapped around one another.
Mr Deniz explained that the path blood vessels take through the brain varies from person to person. In short, I was just unlucky.
He said he could perform microvascular decompression, drilling into my skull and moving the artery. He would then cushion the nerve with Teflon. There was an 80 per cent chance the operation would be successful — so I jumped at the chance. I had my three-hour operation last April.
Afterwards, it took a few hours for me to be lucid enough to realise I wasn’t in any pain. I could talk and laugh and even ate a chicken sandwich that evening. It felt incredibly surreal.
The next morning, I was very emotional when I brushed my teeth for a full two minutes — such an everyday thing, but it meant so much to me.
Three days later, I was discharged with just a small wound behind my ear. Within days, I was out shopping with Lavinia and catching up with friends. It was wonderful.
Trigeminal neuralgia sucks the joy out of everyday life. I’m so grateful there was an operation that cured me so quickly.
Kenan Deniz is a consultant neurosurgeon at Leeds Teaching Hospitals NHS Trust and Nuffield Health Leeds Hospital.
Trigeminal neuralgia affects around ten in 100,000 people in the UK every year and is very debilitating. The pain, which radiates into the head and face, usually on one side, can be so extreme and unrelenting that there have sadly been cases of patients taking their own lives.
The trigeminal nerve comes out of the brain at the base of the skull, and separates into three branches, which supply sensation to different parts of the face.
WHAT ARE THE RISKS OF MICROVASCULAR DECOMPRESSION SURGERY?
There is a 5 per cent risk of cerebral fluid leaking out of the entry wound, which can lead to meningitis.
A 3 per cent risk of stroke during the procedure.
Less than a 1 per cent risk of facial weakness or hearing deterioration on the side of the head being operated on.
Erlick Pereira, a consultant neurosurgeon at St George’s University Hospitals NHS Foundation Trust, says: ‘This is a complex procedure, but the risks — while significant — are low. It has to be performed at a neurosurgical unit, of which there are fewer than 30 across the UK.’
Trigeminal neuralgia can be caused by a tumour pressing on the nerve, but, more commonly, it’s due to a pulsating artery supplying blood to the brain.
As I explained to Jeff, it’s believed that what causes some people to be afflicted comes down to the journey their vascular vessels take through the brain.
If an artery is positioned too close to the nerve and moves even very slightly, that can be enough to cause the compression and resulting pain.
For some, anti-epileptic drugs such as carbamazepine can be effective, but there are patients for whom it works well for a period before they build up a tolerance to the drug.
For these patients, we offer microvascular decompression surgery, which offers a high chance of a cure. It’s not a new procedure, but I’ve found that, particularly at GP level, there isn’t a lot of awareness of it, which means people can suffer for longer than necessary.
When Jeff first came to me, he could barely speak. He had to keep pausing and bracing himself against the pain.
Under general anaesthetic, I make a small incision in the scalp behind the ear on the affected side. I remove a 50p size disc of the skull to expose the dura mater, the leathery layer separating brain from skull.
I then locate the trigeminal nerve at the back of the head, using a powerful microscope and a binocular-type eye piece.
I work in spaces a few millimetres in size — a wrong move could cause serious damage (the trigeminal nerve is only around 5mm wide and the vessel impinging it is even smaller).
In Jeff’s case, I knew from the MRI that the problem was an artery impinging on the nerve, so I carefully moved it away and then used a 2mm piece of Teflon to create a protective barrier around the nerve.
It’s extremely rare that the condition returns: if it does, it’s because the Teflon has moved or another artery has touched the nerve. I have only ever performed one revision.
To see Jeff talking and eating pain-free within hours of the operation was very satisfying.
The procedure costs around £9,000 privately and to the NHS.